Cancer Caregiving in The United States Research SUBRAYADO PDF

Caregiving
Research • Practice • Policy

Ronda C. Talley, Series Editor
An official publication of
The Rosalynn Carter Institute for Caregiving
For further volumes:

http://www.springer.com/series/8274
Editorial Board
Janet Abrahm, MD
Dana-Farber Cancer Institute, Brookline Avenue, Boston
Samira K. Beckwith, ACSW, CHE
Hope Hospice & Palliative Care, Myers, USA
Karlynn BrintzenhofeSzoc, DSW, LCSW-C
Catholic University of America, Hyattsville, USA
Jack Burkhalter, PhD
Memorial Sloan-Kettering, New York, USA
Anne M. Butler, RN
Holly Cross Hospital, Silver Spring, USA
Harvey Jay Cohen, MD
Duke University Medical Center, Durham, USA
Betty Ferrell, PhD, FAAN
City of Hope, Duarte, USA
Marilyn Frank-Stromborg, EdD
Northern Illinois University, IIIinois, USA
Barbara Given, PhD, RN, FAAN
Michigan State University, East Lansing, USA
Mitch Golant
Cancer Support Community, Pasadena, USA
Carol D. Goodheart, EdD
Rutgers University, New York, USA
Marcia Grant, RN, DNS, FAAN
City of Hope, Duarte, USA
Sandra Haber, PhD
Adeiphi University, Long Island, USA
Karen Hartman, BA, MSW
Association of Clinical Research Professionals, Alexandria, USA
iii
iv Editorial Board
Pamela Hinds, PhD, RN, CS

St. Jude Children’s Hospital, Memphis, USA
Jimmie C. Holland, MD
Memorial Sloan-Kettering, New York, USA
Peter S. Houts, PhD
Pennsylvania State University College of Medicine, Hershey, USA
Barry M. Kinzbrunner, MD, FACP
VITAS Healthcare Corporation, Miami, USA
Margaret M. Memmott, MPH
Children’s Hospital Los Angeles, Los Angeles, USA
Laurel Northouse, PhD, RN, FAAN
School of Nursing, University of Michigan, Ann Arbor, USA
Laurence J. O’Connell
Ministry Leadership Center, Sacramento, USA
Shirley Otis-Green, LCSW
City Of Hope National Medical Center, Duarte, USA
Judith Riggs, MA
Alzheimer’s Association, Washington, DC, USA
Teresa Rummans, MD
Mayo Clinic, Rochester, USA
Sheila Judge Santacroce, PhD, APRN, CPNP
Yale University School of Nursing, New Haven, USA
Martin L. Smith, STD
Cleveland Clinic Main Campus, Cleveland, USA
Gina Tesauro, MSW
National Cancer Institute, Rockville, USA
Reed Thompson, MD
Vanderbilt University Medical Center, Nashville, USA
Jean Watson, PhD
University of Colorado, Colorado, USA
Micheal A. Weitzner
H. Lee Moffitt Cancer Center, Tampa, USA
Deane L. Wolcott, MD
UCLA Dept of Psychiatry and Behavioral School, Los Angeles, USA
Ronda C. Talley • Ruth McCorkle
Walter F. Baile
Editors
Cancer Caregiving in the

United States
Research, Practice, Policy
2123
Editors
Dr. Ronda C. Talley Walter F. Baile
Western Kentucky University Department of Behavioral Science
Bowling Green, KY, USA M.D. Anderson Cancer Center
University of Texas
Ruth McCorkle Houston, TX, USA
School of Nursing
Yale University
New Haven, CT, USA
ISSN 2192-340X ISSN 2192-3418 (electronic)

ISBN 978-1-4614-3153-4 ISBN 978-1-4614-3154-1 (eBook)
DOI 10.1007/978-1-4614-3154-1
Springer New York Dordrecht Heidelberg London
Library of Congress Control Number: 2012934957
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To my grandfather, Jim, F. McCoy; my father,
Jack Howard Talley; and my Kiwi, Francis
Michael Fearon; and to the women who cared
for them when they battled cancer. My
grandfather survived and lived to 100 years
of age. My Father and Kiwi did not, and we
lost them far too young to this devastating
disease. We, the caregivers, still mourn.
Ronda C. Talley
To the caregivers of the past, present, and

future—and to my greatest caregiver, my
mother, Virginia McCorkle.
Ruth McCorkle
To Beth, who is always there through thick

and thin.
Walter F. Baile
Foreword
From its inception in 1987, the Rosalynn Carter Institute for Caregiving (RCI) has
sought to bring attention to the extraordinary contributions made by caregivers to
their loved ones. I grew up in a home that was regularly transformed into a caregiving
household when members of my family became seriously ill, disabled or frail with
age, so my interest in the issue is personal. In my hometown of Plains, Georgia, as
in most communities across our country, it was expected that family members and
neighbors would take on the responsibility of providing care whenever illness struck
close to home. Delivering such care with the love, respect, and attention it deserves
is both labor-intensive and personally-demanding. Those who do so represent one
of this nation’s most significant yet underappreciated assets in our health delivery
system.
When the RCI began, “caregiving” was found nowhere in the nation’s health
lexicon. Its existence was not a secret but rather simply accepted as a fact of life.
In deciding on the direction and priorities of the new institute, we convened groups
of family and professional caregivers from around the region to tell their personal
stories. As I listened to neighbors describe caring for aged and/or chronically ill
or disabled family members, I recognized that their experiences reflected mine.
They testified that, while caregiving for them was full of personal meaning and
significance and could be extremely rewarding, it could also be fraught with anxiety,
stress, and feelings of isolation. Many felt unprepared and most were overwhelmed
at times. A critical issue in the “field” of caregiving, I realized, was the need to
better understand the kinds of policies and programs necessary to support those who
quietly and consistently care for loved ones.
With the aging of America’s Baby Boomers expecting to double the elderly pop-
ulation in the next 20 years, deinstitutionalization of individuals with chronic mental
illnesses and developmental disabilities, a rising percentage of women in the work-
force, smaller and more dispersed families, changes in the role of hospitals, and a
range of other factors, caregiving has become one of the most significant issues of our
time. Caregiving as an area of research, as a focus and concern of policy-making, and
as an area of professional training and practice has reached a new and unparalleled
level of importance in our society and indeed globally.
ix
x Foreword
As we survey the field of caregiving today, we now recognize that it is an essential

component of long-term care in the community, yet also a potential health risk for
those who provide care. The basic features of a public health approach have emerged:
a focus on populations of caregivers and recipients, tracking and surveillance of health
risks, understanding the factors associated with risk status, and the development and
testing of the effectiveness of various interventions to maximize benefits for both the
recipients of care and their providers.
The accumulated wisdom from this work is represented in the volumes that make
up the Springer Caregiving Series. This series presents a broad portrait of the nature
of caregiving in the United States in the twenty-first century. Most Americans have
been, are now, or will be caregivers. With our society’s increasing demands for care,
we cannot expect a high quality of life for our seniors and others living with limitations
due to illness or disability unless we understand and support the work of caregivers.
Without thoughtful planning, intelligent policies, and sensitive interventions, there
is the risk that the work of family, paraprofessional, and professional caregivers will
become intolerably difficult and burdensome. We cannot let this happen.
This volume focuses on the caregiving demands for family and loved ones of
someone diagnosed with cancer. At each stage of the disease’s progression from
diagnosis to treatment to struggles with rehabilitation, recuperation, remission, and
potentially recurrence, both the person with the diagnosis and the family encounter
specific challenges. Among these, obviously are the emotional distress experienced
by all involved following the diagnosis and progressing across all that follows in
fighting against the disease, maintnaing hope, and preparing for both the best and
worst outcomes. Part of that distress is the sense that above all one must spare the
person with cancer any sense of the diagnosis’impact on loved ones. Beyond its emo-
tional demands, cancer also presents caregivers with a broad array of comprehensive
caregiving. The chapters within this volume will inform readers of the complexity
of caregiving for this far too prevalent and highly feared diagnosis.
Readers of this series will find hope and evidence that improved support for family
and professional caregivers lies within our reach. The field of caregiving has matured
and, as evidenced in these volumes, has generated rigorous and practical research
findings to guide effective and enlightened policy and program options. My hope
is that these volumes will play an important role in documenting the research base,
guiding practice, and moving our nation toward effective polices to support all of
America’s caregivers.
Rosalynn Carter
Contents
1 Caring for a Loved One with Cancer: Professional and Family Issues 1
Ruth McCorkle, Ronda C. Talley and Walter Baile
Part I Issues Effecting the Care Triad
2 Diagnostic Issues: Family Dynamics and Caregiving

for an Individual with Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Diana J. Wilkie and Stuart J. Farber
3 The Emotional Responses of Family Caregivers: Living with Cancer

and Helping Families Cope . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Ruth McCorkle and Barbara Given
4 The Impact of Health Disparities on Cancer Caregivers . . . . . . . . . . . . 63

Carol D. Goodheart
5 Education, Training, and Support Programs for Caregivers

of Individuals with Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79
Myra Glajchen
6 What Professionals in Healthcare Can Do: Family Caregivers

as Members of the Treatment Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
Walter F. Baile, Phyddy Tacchi and Joann Aaron
Part II Issues in Providing Direct Care
7 Issues Faced by Family Caregivers in Providing Appropriate Care

for Cancer Patients with Short-Term/Intermittent Care Needs . . . . . . 127
Robert Bergamini and Karrie Cummings Hendrickson
8 Issues in Caregiving for Cancer Patients with Long-Term Care Needs 145
Barry J. Jacobs
xi
xii Contents
9 Caregiver End-of-Life Care of the Person with Cancer . . . . . . . . . . . . . 161

Lodovico Balducci and Sheryl LaCoursiere
10 Advances in Cancer Care Impacting Familial Caregiving . . . . . . . . . . . 179

Victoria H. Raveis
Part III Cross-Cutting Issues Impacting Caregivers and Caregiving
11 Caregiver Stress: The Role of Spirituality in the Lives

of Family/Friends and Professional Caregivers of Cancer Patients . . . 201
Christina M. Puchalski
12 The Economics of Cancer Care: Implications for Family Caregivers 229

Dee Baldwin
13 Legal Issues in Cancer Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 249

Marilyn Frank-Stromborg and Kenneth R. Burns
14 Cancer Caregiving: Policy and Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . 265

Dale L. Kaufman, Ann O’Mara and Christine M. Schrauf
15 Caregivers of Patients with Cancer: Ethical Issues . . . . . . . . . . . . . . . . . 287

Martin L. Smith and Mary Elizabeth Paulk
Part IV Conclusions
16 Cancer and Caregiving: Changed Lives and the Future

of Cancer Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 315
Ronda C. Talley, Ruth McCorkle and Walter F. Baile
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323
About the Editors
Ronda C. Talley, PhD, MPH is Professor of Psychology at Western Kentucky Uni-

versity. Her prior work experience includes providing leadership on caregiving issues
and organizational development as Executive Director of the Rosalynn Carter Insti-
tute for Caregiving; working with national government groups to promote caregiving
issues as Associate Director of Legislation, Policy, and Planning/Health Scientist for
the Centers for Disease Control and Prevention, U.S. Department of Health and Hu-
man Services; and promoting the science and practice of psychology in the schools
as Associate Executive Director of Education and Director of School Policy and
Practice at the American Psychological Association. Dr. Talley, as Adjunct Asso-
ciate Professor, taught ethics and legal issues in school psychology at the University
of Maryland, College Park. Dr. Talley received the Outstanding Alumni Award from
Indiana University and the Jack Bardon Distinguished Service Award from the Divi-
sion of School Psychology of the American Psychological Association. She serves
on the national board of the American Association of Caregiving Youth. Dr. Talley
may be reached at 1906 College Heights Boulevard, GRH 3023, Bowling Green,
KY 42101; by telephone at (270) 745-2780; or via e-mail at [email protected].
Ruth McCorkle, PhD, FAAN is the Yale University Florence S. Wald Professor of
Nursing and Professor of Epidemiology and former Director of the Center for Ex-
cellence in Chronic Illness Care. In addition, Dr. McCorkle is currently the Director
of the Psycho-oncology program at the Smilow Cancer Hospital at Yale New Haven
Hospital. She has won numerous awards recognizing her outstanding contributions to
nursing science, cancer leadership, and psycho-oncology. Dr. McCorkle was elected
both to the American Academy of Nursing and the Institute of Medicine. She has
received the Nurse Scientist of the Year Award by the American Nurses Associa-
tion, the Distinguished Research Award from the Oncology Nursing Society, and
the Bernard Fox Memorial Award from the International Psycho-Oncology Society.
In 2011, she received the Holland Distinguished Leadership Award from the Amer-
ican Psychosocial Oncology Society (APOS), the highest award given in the field
of psycho-oncology. Dr. McCorkle was the first non-medical training grant award
recipient from the National Cancer Institute (NCI) and is thus credited with opening
xiii
xiv About the Editors
the door for other non-medical researchers to secure funding for training from the
NCI. Dr. McCorkle may be reached at the Yale University School of Nursing, 100
Church Street South, P.O. Box 9740, New Haven, CT 06536-0740; by phone at (203)
737-5501; or via e-mail at [email protected].
Walter F. Baile, MD is Professor of Behavioral Science and Director of the Pro-

gram in Interpersonal Communication and Relationship Enhancement (I*CARE) in
the Department of Faculty Development at The University of Texas M. D. Anderson
Cancer Center. Dr. Baile has brought his talents in teaching communication skills
to many parts of the world and has led workshops and other teaching programs in
Japan, Italy, Germany, and other sites around the world. Currently, he participates
in a National Cancer Institute sponsored program to train oncologists to teach com-
munication skills. Dr. Baile produced “On Being an Oncologist,” a video for cancer
clinicians starring the actors William Hurt and Megan Cole and is author of over 150
scientific papers, book chapters, and abstracts on clinician-patient communication.
Dr. Baile’s latest project is development of the MD Anderson Library of Commu-
nication Skills in Oncology, a repository of video and contemporary educational
tools to drive home the important messages of how to communicate with cancer pa-
tients. He can be reached at The University of Texas M. D. Anderson Cancer Center,
1515 Holcombe Blvd., Box 135, Houston, Texas 77030-4009; by phone at (713)
745-4116; or via e-mail at [email protected].
Contributors
Joann Aaron, MA is a Scientific Editor/Medical Writer, Department of Community

Oncology, The University of Texas M.D. Anderson Cancer Center. With more than
20 years of experience, Ms. Aaron has written and edited book chapters, articles,
reviews, abstracts, grants and protocols. Joann had in-depth experience compiling
detailed scientific and medical information in the areas of general oncology, neuro-
oncology, phase I clinical trials, community oncology control and prevention trials,
clinical and research focused manuscripts, posters, slide presentations, letters of
intent, and other scientific materials. She may be reached at The University of Texas
M.D. Anderson Cancer Center, 1515 Holcombe Blvd., Houston, TX 77030; or by
phone at (877) MDA-6789.
Lodovico Balducci, MD is board-certified in medical oncology/hematology. He
serves as Professor of Oncology and Medicine, University of South Florida College
of Medicine, and Program Leader, Senior Adult Oncology Program, Department
of Interdisciplinary Oncology, University of South Florida College of Medicine,
and medical director of Affiliates and Referring Physician Relations at the H. Lee
Moffitt Cancer Center. Dr. Balducci is nationally and internationally recognized for
his contributions to geriatric oncology. Recent awards and recognition include the
17th annual Claude Jacquillat Award for Achievement in Clinical Oncology (Paris);
the 2009 Nimmo Visiting Professorship in Adelaide, Australia; the 2009 Mehdi
Tavassoli Memorial Lecture in Jackson, Miss.; the first American Society of Clinical
Oncology B.J. Kennedy Award in 2007; the American Community Cancer Center
recognition for outstanding clinical research in 2006; and the first Paul Calabresi
Memorial Lecture for the International Society of Geriatric Oncology in 2005 (Rome,
Italy). Dr. Balducci may be reached at the H. Lee Moffitt Cancer Center, 12902
Magnolia Drive, Tampa, FL 33612; by telephone at (813) 979–3822; or via e-mail
at [email protected].
Dee M. Baldwin, PhD, RN, FAAN is Director, School of Nursing, at the University
of North Carolina at Charlotte. An expert in health promotion and women’s well-
ness, her scientific work addresses the promotion of breast health in older African
American women and issues related to early detection and screening and health lit-
eracy. Dr. Baldwin is the principal investigator for several studies on the promotion
xv
xvi Contributors
of breast health for older African American women, and has developed a model for
encouraging low-income African American women to participate in breast and cer-
vical cancer early detection and screening. She may be reached at the University of
North Carolina at Charlotte, 9201 University City Blvd., CHHS 449B, Charlotte,
NC 28223-0001; by phone at (704) 687–7953; or via e-mail at [email protected].
Robert Bergamini, MD is President of Unity Physician Hospital Organization and
a physician who is board-certified in both pediatrics and pediatric hematology/
oncology. His research interests focus on immune suppressor regulation. Dr.
Bergamini may be reached at 607 S. New Ballas Road, Suite 2415, St. Louis,
MO 63141; by phone at (314) 251–6986; or via e-mail at [email protected].
Kenneth R. Burns, PhD, RN is Professor and Chair of the Division of Nursing
at Martin Methodist College. He may be reached at 433 West Madison Street,
Pulaski, Tennessee 38478; by telephone at (931) 424–7395; or via e-mail at
[email protected].
Marilyn Frank-Stromborg, CNP, EdD, JD, FAAN is Special Court Administrator,
Drug Court Coordinator for the DeKalb County Courthouse. She may be reached at
133 West State Street, Sycamore, Illinois 60178; by phone at (815) 895–7224; or via
e-mail at [email protected].
Barbara Given, PhD, RN, FAAN is the Associate Dean for Research and Univer-
sity Distinguished Professor, College of Nursing, Michigan State University. Her
research and contributions to the nursing profession have won her various awards,
including the Life Time Achievement Award, College of Nursing Alumni Associa-
tion, as well as the Elizabeth McWilliams-Miller Award for Excellence in Research.
She may be reached at Michigan State University, School of Nursing, B515-C West
Fee Hall, East Lansing, MI 48824-1315; by phone at (517) 432–9159; or via e-mail
Myra Glajchen, DSW is the Director of the Institute for Education and Research
in Pain and Palliative Care, Department of Pain Medicine and Palliative Care, Beth
Israel Medical Center. Dr. Glajchen created Beth Israel’s Family Caregiver Program
and as its Principal Investigator, has guided the development and dissemination
of the program’s deliverables and research studies. Among her accomplishments
are development of the Brief Assessment Scale for Caregivers (BASC), creation of
an award-winning website for caregivers, and publication of the widely acclaimed
Caregiver Resource Directory. Dr. Glajchen is currently Principal Investigator for
two studies, one on medication adherence for cancer and chronic pain patients and
their caregivers; the other, a project to increase recognition of palliative care needs
among patients and their caregivers in the Emergency Department through assess-
ment, referral, clinical intervention and professional education. She may be reached
at the Center at First Avenue at 16th Street, Baird Hall, Room 12BH23, New York,
NY 10003; by phone at (212) 844.1472; or via e-mail at [email protected].
Carol D. Goodheart, EdD is a scholar–practitioner in independent practice in
Princeton, New Jersey. Her career integrates practice, research, and service to psy-
chology. Dr. Goodheart works at the intersection of physical and mental health,
Contributors xvii
practice and science, humanism and scholarship. Dr. Goodheart was the 2010 Pres-
ident of the American Psychological Association and currently serves on its Board
of Directors. As APA President, she founded the APA Presidential Task Force on
Caregivers, which developed a “Family Caregiver Briefcase for Psychologists” to
assist psychologists in recognizing, assessing, and addressing the needs of a broad
group of family caregivers across the life span. Dr Goodheart earned awards as a
Fellow of the American Psychological Association, a Distinguished Practitioner in
the National Academy of Psychology, a Registrant in the National Register of Health
Service Providers in Psychology, and the recipient of national and state Psycholo-
gist of the Year Awards from Psychologists in Independent Practice and from the
New Jersey Psychological Association, as well as the recipient of the Distinguished
Psychologist Award for lifetime contributions to psychotherapy from the Division
of Psychotherapy of the American Psychological Association. Dr. Goodheart may
be contacted at 114 Commons Way, Princeton, NJ 08540; by telephone/fax at (609)
987–8844; or via e-mail at [email protected]. Additional information
may be found on her website at www.DrCarolGoodheart.com.
Karrie Cummings Hendrickson, PhD, RN is a Clinical Coordinator for Finance
and Decision Support at Yale-New Haven Health System and an Associate Research
Scientist at Yale School of Nursing. Dr. Hendrickson may be reached at Decision
Support, Yale-New Haven Health System, 20 York St., New Haven, CT 06510; by
phone at 203-688-5214; or via e-mail at [email protected].
Barry J. Jacobs, PsyD is the Director of Behavioral Sciences for the Crozer-
Keystone Family Medicine Residency Program of Springfield, PA, and an adjunct
faculty member of the Temple University School of Medicine, the University of
Pennsylvania School of Nursing, and the Institute for Graduate Clinical Psychology
of Widener University. A clinical psychologist and family therapist, Dr. Jacobs is the
author of The Emotional Survival Guide for Caregivers—Looking After Yourself and
Your Family While Helping an Aging Parent, which focuses on the story of two sisters
in their fifties struggling to take care of their cancer-stricken, 80-year-old mother. He
is also the editor of the “In Sickness and Health” column for the journal Families,
Systems and Health and writes an advice column for “Take Care!”, the newsletter
of the National Family Caregivers Association. Dr. Jacobs may be reached at 1260
E. Woodland Avenue, Springfield, PA 19094; by phone at (610) 690-4490; or via
e-mail at [email protected].
Dale L. Kaufman, MPH, MA is a speechwriter at the Centers for Medicare and
Medicaid Services in the U.S. Department of Health and Human Services. A ca-
reer government employee, Ms. Kaufman formerly served as Senior Public Health
Writer at U.S. Department of Veterans Affairs and Senior Speechwriter at the Office
of Justice Programs, U.S. Department of Justice. Ms. Kaufman may be reach at
the Centers for Medicare and Medicaid Services, 200 Independence Avenue S.W.,
309D-02, Washington, DC, 20201; by telephone at (202) 260–1420; or via e-mail at
[email protected].
xviii Contributors
Sheryl LaCoursiere, PhD, FNP-BC, APRN is a Clinical Assistant Professor at the

University of Massachusetts Boston and Lecturer atYale School of Medicine, Center
for Medical Informatics. She was previously a Department of Defense Postdoctoral
Fellow in Breast Cancer at Yale School of Nursing. Dr. LaCoursiere’s research in-
terests include informatics and technology, and the use of the Internet for health
communication and intervention, particularly for chronic illnesses across the life-
span. Other research interests include complementary and alternative medicine, as
well as family care and geriatrics. Dr. LaCoursiere developed a Theory of On-
line Social Support, which is being used internationally, as well as the Attitudes
Toward Online Healthcare (ATOHC) scale, which has been studied with various
chronic conditions. She may be reached at the University of Massachusetts Boston,
42 Middleway East, Waterbury, CT 06708; by phone at (203) 910-0052; or via e-mail
Ann O’Mara, PhD, RN, MPH is Program Director, Community Oncology and
Prevention Trials Research Program, Division of Cancer Prevention, National Cancer
Institute, 6130 Executive Blvd., EPN 2010, Bethesda, MD 20892-7340. Dr. O’Mara
previously served as a Cancer Prevention Fellow with the National Institute of Health.
She may be reached at DHHS/NIH/NCI/DCP, MS-7340, Rockville MD 20892; by
phone at (301) 402–5336; or via e-mail at [email protected].
Mary Elizabeth Paulk, MD is Professor at the University of Texas Southwest-
ern Medical Center. Dr. Paulk received the 2000 Soros Foundation Project on
Death in America Faculty Scholar Award to support research in end-of-life care
and the 2005 Champion of End-of-Life Care Award honoring Texans making an
outstanding contribution to improving the quality of end-of-life care. She may
be reached at the Division of General Internal Medicine, 5323 Hines Boule-
vard, Dallas, TX 75390-8889; by phone at (214) 648–0288; or via e-mail at
[email protected].
Christina M. Puchalski, MD, MS, FACP is Christina Puchalski, MD, MS is the
Founder and Executive Director of the George Washington Institute for Spiritu-
ality and Health (GWish) and a Professor of Medicine and Health Sciences at
The George Washington University School of Medicine, where she has pioneered
novel and effective educational and clinical strategies to address the spiritual con-
cerns common in patients facing illness. Dr. Pulaski has received numerous awards
including the Healthcare Foundation of New Jersey’s Faculty Humanism in Medicine
Award and the 2009 George Washington University Distinguished Alumni Award.
She is a Fellow of the American College of Physicians and a member of the Alpha
Omega Alpha (AA) medical honor society. Dr. Pulaski may be reached at The
George Washington University, School of Medicine and Health Sciences, 2131 K St,
NW, 5th floor, Washington, DC 20037; by phone at(202) 994–6220: or via e-mail at
[email protected].
Victoria H. Raveis, MA, MPhil, PhD is a Research Professor and Director of the
Cardiology and Comprehensive Care Center in the College of Dentistry at New
York University and Director of the university’s Psychosocial Research Unit on
Contributors xix
Health, Aging and the Community. She may be reached at 380 Second Avenue,
Suite 301, New York, NY 10010; by phone at (212) 998–9805; or via e-mail at
[email protected].
Christine M. Schrauf, PhD, RN, MBA has many years of experience as a medical
nurse, with clinical, education, and administrative roles in the specialty of hemodial-
ysis care. She has held nursing faculty positions during her early career and recent
doctoral education. Her areas of knowledge and interest also include health policy
and ethical dimensions of end-of-life care, topics of focus in recent presentations
and publications. Her research addresses state support systems for informal family
caregivers caring for loved ones at home. Professional memberships include Sigma
Theta Tau, the American Nephrology Nurses Association, and the American Nurses
Associations. She may be reached at Elms College Division of Nursing, 291 Spring-
field St. BH 431, Chicopee, MA 01030; by phone at (413) 265–2417; and via e-mail
Martin L. Smith, STD is Director of Clinical Ethics in the Department of Bioethics
at the Cleveland Clinic. Previously, he served as Chief of Clinical Ethics and as an
Associate Professor in the Department of Critical Care at The University of Texas
M.D. Anderson Cancer Center. Dr. Smith’s areas of research include ethics con-
sultation, end-of-life issues, institutional ethics committees, medical mistakes, and
informed consent. He may be reached at the Cleveland Clinic, Center for Ethics,
Humanities and Spiritual Care, Mail Code JJ60, 9500 Euclid Avenue, Cleveland,
OH 44195 or by phone at (216) 445–2769.
Phyddy Tacchi, RN, CNS, LMFT, LPC is a Clinical Nurse Specialist in the De-
partment of Psychiatry, The University of Texas M.D. Anderson Cancer Center. As
a psychiatric advanced practice nurse who specializes in the emotional difficulties
patients and caregivers encounter in adjusting to living a life with cancer, Ms. Tac-
chi’s interests include a focus on the emotional strengths and challenges of the family
caregiver; working with couples struggling with the impact the cancer experience
has placed upon their relationship; and training staff to enhance their communica-
tion skills during difficult conversations with patients and families using innovative
role training techniques. She may be reached at the The University of Texas, M.D.
Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030; or by phone at
(713) 792–6600.
Diana J. Wilkie, PhD, RN, FAAN is Professor and Harriet H. Werley Endowed
Chair for Nursing Research in the Department of Biobehavioral Health Science
College of Nursing, University of Illinois at Chicago. Dr. Wilkie is an internationally-
known pain specialist with a special emphasis on palliative and end-of-life care in
cancer and other life-threatening illnesses. She has many publications about pain, and
her research program on pain has been continuously funded since 1986. Currently,
she is conducting two randomized clinical trials testing the effects of massage and
effects of computerized pain tools on clinical outcomes and several pilot studies.
Dr. Wilkie may be reached at 845 South Damen Avenue (MC802), Chicago,
IL 60612-7350; via phone at(312) 413–5469; or by e-mail at [email protected].
Chapter 1
Caring for a Loved One with Cancer:
Professional and Family Issues
Ruth McCorkle, Ronda C. Talley and Walter Baile
Caring for a Loved One with Cancer:

Professional and Family Issues
The evolution of the healthcare system over the past few decades has resulted in
shorter hospital stays and greater numbers of invasive, out-patient procedures for
most patients. This change in healthcare delivery has resulted in more family mem-
bers being thrust into the role of caregiver (Cawley and Gerdts 1988; Conkling 1989;
Yost et al. 1993).
Historically and transculturally, there have always been a role for family caregivers
although the role went largely unrecognized by health practitioners, researchers,
and advocates. Although some caregiving research was conducted in the 1970s, it
focused largely on the caregivers for individuals with dementia. Caregiving as a
national issue came to the forefront in the early 1990s and found a champion in
former First Lady Rosalynn Carter, who has a long-term interest in caring for the
mentally ill. Over the years, the literature has evolved to address caregiver needs and
concerns in many areas, including informational needs; psychological, physical, and
spiritual health outcomes; race and gender disparities; and evidence-based support
The findings and conclusions in this chapter are those of the authors and do not necessarily
represent the views of the Centers for Disease Control and Prevention.
R. McCorkle ()
School of Nursing, Yale University, 100 Church Street South, New Haven,
CT 06536-0740, USA
e-mail: [email protected]
R. C. Talley
Centers for Disease Control and Prevention, Western Kentucky University,
1906 College Heights Boulevard, Bowling Green, KY 42101, USA
W. Baile
M. D. Anderson Cancer Center, University of Texas, Houston, TX 77230-1402, USA
R. C. Talley et al. (eds.), Cancer Caregiving in the United States, 1

Caregiving: Research, Practice, Policy,
DOI 10.1007/978-1-4614-3154-1_1, © Springer Science+Business Media, LLC 2012
2 R. McCorkle et al.
and education strategies. Now a wide range of professional and family caregivers as
well as professional advocacy organizations collaborate on caregiving-related health
delivery, research, education, and policy concerns.
This increased attention to the needs of caregivers is timely. The level of tech-
nical, psychological, and physical support now demanded of family caregivers is
unprecedented (Ganz 1990). The responsibility for complex patient care may reside
with the family member without regard for adequacy of resources or sufficiency of
preparation. Subsequently, family caregivers can suffer a myriad of physical, mental,
social, and spiritual consequences which may, in turn, adversely affect the ill family
member.
Definitions of Caregiving, Family Caregiver,

and Professional Caregiver
To define caregiving, we turned to several well-known caregiving researchers and

advocacy groups. The National Family Caregivers Association (NFCA n.d.) defines
caregiving as the necessary physical and mental health support to care for a fam-
ily member. One description of informal or family caregiving that has been widely
accepted over time was offered in 1985 by Horowitz (1985), who indicated that
informal care involves four dimensions: direct care (helping to dress, managing
medications); emotional care (providing social support and encouragement); me-
diation care (negotiating with others on behalf of the care receiver); and financial
care (through managing fiscal resources, including gifts or service purchases). The
challenges of actually providing informal or family caregiving have been attributed
to the level of intensity and physical intimacy required to provide care; the amount
of burden, distress, and role strain that care engenders for the caregiver, and the skill
required to master care tasks.
Relatedly, the Administration on Aging (n.d.) defines a caregiver as “anyone who
provides assistance to another in need.” The National Alliance for Caregiving and the
American Association of Retired Persons (NAC/AARP 2009) define caregiving as
caring for an adult family member or friend. However, most definitions of caregiving
adopt a life span perspective that includes children and youth as both caregivers and
care recipients.
More specifically, family caregiver is defined by the Health Plan of New York and
NAC (n.d.) as a person who cares for relatives and loved ones. MetLife and NAC
(2006) expanded on this definition by specifying additional qualifiers, stating that a
family caregiver is “a person who cares for relatives and loved ones who are frail,
elderly, or who have a physical or mental disability.” Similarly, the NFCA (n.d.)
added that family caregivers provide a vast array of emotional, financial, nursing,
social, homemaking, and other services on a daily or intermittent basis. The NFCA
advocates for the term family caregiver to be defined broadly and to include friends
and neighbors who assist with care by providing respite, running errands, or doing
a range of other tasks that support the caregiver and care recipient. In this book,
we will use the terms informal caregiver and family caregiver interchangeably and
employ the comprehensive NFCA definition of family caregiver to refer to caring
relatives, friends, and neighbors of all ages across the life span (see Intergenerational
Caregiving, this series).
Caregiving can have different meanings to individuals, depending on their rela-
tionship to the patient, the roles they take on as caregiver, the point in the disease
trajectory, the predicted outcome for the patient, the support they receive from other
family members and friends, and their cultural and religious background. Thus,
definitions have to be individualized to each situation.
Caregiving is a process that occurs across the life span. It begins with infant care,
changes to meet the development needs of children and adolescents, and continues
as we enter adulthood and mid-life. This process concludes with end-of-life care,
including bereavement care. When we look at caregiving across the continuum of
life, it becomes easy to see why it is an issue that involves all people, regardless
of race, gender, socioeconomic status, disability condition, or age. As noted in The
Multiple Dimensions of Caregiving and Disability, the second book in the Rosalynn
Carter Institute for Caregiving book series, “Caregiving is an activity in which we
will all engage at some time(s) in our lives” (Crews and Talley 2011).
Throughout the book, we use the term professional caregivers to refer to paid
care providers such as physicians, nurses, social workers, psychologists, case man-
agers, hospice workers, home health aides, and many others. The designation as
professional caregiver excludes family caregivers who may receive funds to provide
care from new and emerging sources, such as the Medicaid Cash and Counseling
Demonstration Program.
Our Nation’s Caregivers
One of the most recent comprehensive reports that examined caregivers was done by
the NAC and the AARP (NAC/AARP 2009). In the report, Caregiving in the United
States, it is estimated there are 43.5 million caregivers in the nation, 3.5 million of
whom care for individuals with cancer. The family caregiver population is heteroge-
neous: approximately 67% are female, 59% married, 55% employed, and 34% have
a high school education or less.
Caregivers of a Loved One with Cancer
According to a recent report by the American Cancer Society (Cancer Statistics

2012), 577,000 deaths from cancer are projected to occur in the United States in
2012. An estimated 76% (or over 400,000) of these deceased patients had been
cared for by a family member in the prior year(s). With the growing trend toward
more cancer treatments provided on an ambulatory basis, much of the responsibility

of care has shifted from healthcare professionals to patients and their families. In
light of the large number of family caregivers for patients with cancer who confront
circumstances that may pose a considerable risk to both their physical and mental
health, we have undertaken this book to address the broad range of issues that we
understand about caregiving, including what we know and what we do not know.
Caregiver Psychological Cost
The diagnosis of cancer has been well recognized as a major stressor that imposes
disruption and disorganization for not only the person with cancer, but also for the
caregiver (Montazeri et al. 1996). During the diagnostic phase, the person with
cancer and the family caregiver face existential concerns that force an evaluation
of their futures and life goals (Weisman and Worden 1976). The task of caring for
the patient involves incorporation of a variety of complex skills which frequently
fall on the spouse and other family members who may not be prepared, willing, or
able to take on these tasks. Caregivers often find themselves physically, emotionally,
and financially drained (Stetz 1987), which can make the care burdensome. Several
studies have described the burden of family, however, these studies have primarily
been limited to Caucasian populations and women (Northouse et al. 2006).
Caregiving Fiscal Cost
The cost associated with family caregiving to individuals with cancer was conser-
vatively estimated at US$ 1 billion annually in 2001 (Hayman et al. 2001). Based
on a sample of 7,443 individuals who participated in the Asset and Health Dynamic
Study (AHEAD) survey, this accounts solely for direct patient care hours valued at
US$ 8.17/hour. The cost of family caregiving far exceeds US$ 1 billion when one
considers the health and social consequences incurred by the caregiver. The most
frequently cited sources of caregiver compromise are: psychological impairment
(Grunfeld et al. 2004; Kurtz et al. 2004); mood disturbance (Soothill et al. 2001);
sleep disturbance (Carter 2003; Carter and Chang 2000); fatigue (Jensen and Given
1993); impaired immune function (Kiecolt-Glaser et al. 1991); decline in personal
health status (Lee et al. 2003; Vitaliano et al. 1993); social isolation (Cameron
et al. 2002); feelings of helplessness and lack of control (Goldstein et al. 2004); and
insufficient skill to manage the ill family member’s symptoms (Nijboer et al. 1999).
In a qualitative study of 15 family caregivers, Strang and Koop (2003) found
that several factors facilitated or interfered with caregiver coping. One factor that
interfered with caregiver coping is the competence, or the ability to provide care, of
the professional caregiver. When professional caregivers were less than competent,
they added to rather than reduced the caregiving burden. The economic cost of
providing family care in the home also places a significant burden on caregivers.
With the shift toward community-based care, a number of costs have shifted to
the patient and caregiver. Out-of-pocket financial expenditures include medications,
transportation, home medical equipment, supplies, and respite services. These costs
are nonreimbursable and often invisible, however, are very real to families who are
trying to provide care on a fixed income.
Caregiver Health Costs
Several studies attribute caregiving to a decline in personal health. The Caregiver

Health Effects Study (Schulz and Beach 1999), a prospective population-based study,
examined the relationship between spousal caregiving demands and all-cause mortal-
ity at four years. Using a study population of 392 spouse caregivers and 427 matched
noncaregivers, and controlling for demographic and physical health status predictors,
results at a four year follow-up revealed a 63% higher mortality risk among family
caregivers experiencing strain (56.5% of caregivers) versus noncaregivers. Family
caregiver s who did not experience strain (43.5% of caregivers) had mortality rates
similar to noncaregivers. The authors concluded that the experience of mental or
emotional strain among family caregivers is an independent risk factor for mortality.
Additional studies unanimously conclude that chronic stress of caregiving contributes
to cardiovascular disease (Lee et al. 2003; Vitaliano et al. 1977); neuroendocrine dys-
function (Irwin et al. 1997); and impaired immune function (Kiecolt-Glaser et al.
1991).
The psychological toll of caring for a family member with cancer has been well
documented over the years (Grov et al. 2005; Grunfeld et al. 2004; Kurtz et al. 2004;
Laizner et al. 1993). Anxiety and depression are the most often cited cancer family
caregiver impairments, with prevalence estimates for depression ranging from 12
(Grunfeld et al. 2004) to 30% (Blanchard et al. 1997) and estimates for anxiety
at 35% (Grunfeld et al. 2004). In several studies, the cancer family caregiver’s
mental health burden exceeded that of the cancer patient (Harding and Higginson
2003; Higginson and Wasde 1990; Soothill et al. 2001; Wingate and Lackey 1989).
Anxiety, depression, stress, and tension have all been shown to increase as the
patient’s functional status declines and as the patient approaches death (Given et al.
2004; Grov et al. 2005; Grunfeld et al. 2004; Kurtz et al. 1994, 2004; Harding and
Higginson 2003). A metaanalysis of the relationship between psychological distress
of cancer patients and their caregivers (Hodges et al. 2005) indicates a mutuality of
distress response in the dyad.
As the caregiver literature has matured, predictor variables for mental health issues
among cancer family caregivers have been identified. Caregiver depression appears
to be especially sensitive to: (a) sleep deprivation (Carter and Chang 2000); (b) per-
ceived burden of caregiving (Schulz and Beach 1999; Lee et al. 2003); (c) caregiver
shift in role; (d) responsibility level; (e) leisure activity (Williamson et al. 1998);
(f) lifestyle interference; and (g) social isolation (Cameron et al. 2002; Goldstein
et al. 2004); all of which are modifiable risk factors. Sleep disturbance and fatigue
among family caregivers have been minimally investigated, possibly because they are
an obvious and assumed dysfunction implied in the role of caregiver (Carter 2003;
Carter and Chang 2000). In one study, the investigators discovered that although
family caregivers were prescribed sleep medication they were reticent to take it for
the fear that it would prevent them from carrying out their caregiver responsibilities.
Predictably, strongly significant positive correlations were found between caregiver
sleep problems and caregiver level of depression.
For many cancer family caregivers, physical and psychological outcomes appear
to be mediated by perceptions of caregiving burden weighed against the positive
aspects of the role (Glajchen 2004; Goldstein et al. 2004; Hudson 2004; Kurtz et al.
2004; Nijboer et al. 1999). Notably, perceived burden and the associated strain are
not associated with the number of hours one devotes to caregiving, or the severity of
the patient’s symptoms (Kurtz et al. 2004). Instead, perception of burden seems to
be most influenced by lifestyle interference (Cameron et al. 2002), social isolation
and restriction in activity due to caregiver responsibilities (Williamson et al. 1998),
and low self-efficacy or feelings of inadequacy when performing caregiving tasks
(Nijboer et al. 1999).
Although much of the literature addresses the negative consequences of being a
family caregiver, recently attention has been given to the rewards and satisfaction
available to family caregivers (Hudson 2004). These include the protective effects of
perceiving value and meaning in the caregiving role (Haley et al. 2003), a sense of
accomplishment, and a better relationship with the care recipient, as well as personal
growth and family cohesion (Cawley and Gerdts 1988; MacVicar and Archbold
1976; Wellisch et al. 1978). However, caregiving remains associated with negative
consequences, particularly when care provision is perceived as an encumbrance to
the caregiver. During the caregiving phase, when positive perceptions predominate
over negative ones, it is possible that the benefits to the caregiver may extend to
the bereavement experience (Koop and Strang 2003). The general health status of
cancer caregivers tends to mirror that of adults with disabilities. Both groups display
more risky health behaviors, such as alcohol and tobacco use, are less likely to make
and keep routine medical visits, and have poorer perceptions of their health status
(King et al. 1994). Burton et al. (1997) found that caregivers with a high level of
involvement with the care recipient (defined as caring for an individual with at least
one impairment in activities of daily living [ADLs]) reported not having enough time
to exercise or recuperate from illness, and forgetting to take prescribed medications.
All of these may have negative health consequences. For instance, caregiving has
been overall linked to decreased physical health for the caregiver (Schulz and Beach
1999; Vitaliano and Katon 2006) and an increase in caregiver mortality rates (Irwin
et al. 1997).
Clinicians should be mindful of how their personal views and concerns about
cancer affect communication with cancer patients and family caregivers, especially
at key decision-making and transition points along the continuum of care. It
is essential for healthcare professionals to establish structured dialogue among
patients, family members, and other professional caregivers regarding treatment
goals and expectations. Within patient- and caregiver-centered care paradigms, it

is necessary to separate and clarify the values, thoughts, and emotional reactions of
care providers, patients, and families.
Social support has been consistently found to influence a person’s psychosocial
adjustment to cancer. The ability and availability of significant others to deal with
diagnosis and treatment can significantly affect the patient’s self-perception. Regard-
less of the type of cancer, individuals who receive a cancer diagnosis experience a
heightened need for interpersonal support. Those who are able to maintain close con-
nections with family and friends during the course of illness are more likely to cope
effectively with the disease than those who are not able to maintain such relationships
(Burton et al. 1997; Glajchen 2004).
Living with a chronic illness, such as cancer, often requires continuing care and
management by a team of specialists. Care is usually provided through follow-up
visits to ambulatory or out-patient clinics and consulting rooms rather than through
hospitalization. The burden that caregiving places on the family highlights the fam-
ily’s needs and the importance of offering support and information that can help
reduce caregiver burden. Helping to arrange respite care for the patient also aids in
relieving caregiver burden.
During times of transition between the stages of disease and treatment, family
members often have increasing responsibilities, assuming duties previously per-
formed by the care recipient, and coordinating and potentially delivering care in the
home. Family members’ level of distress and methods of dealing with that distress,
in fact, may vary throughout the illness trajectory from initial diagnosis through
subsequent therapy to the point when viable treatment options have been exhausted.
The increasing responsibilities of the family caregiver in the face of limited external
support and the consequences of caregiving for the patient and family raise important
challenges for professional caregivers.
Family members must cope with their emotional responses to the cancer diagnosis
and cope with the physical, social, and financial dimensions of providing care. With a
cancer diagnosis, family caregivers are now expected to play a major role in assisting
with the management of the disease, treatment, and treatment-related side effects.
Cancer and its treatment may alter family identity, roles, communication patterns,
and daily functioning. These changes can occur over an extended period of time as
family caregivers deal with unfamiliar situations and demands as cancer treatment
continues, as the disease progresses, or as the patient recovers and survives.
When changes in patients’conditions are due to remissions and exacerbations, this
necessitates changes in the family caregivers’ care responsibilities and role demands.
Change adds stress, and constant adaptations require more work, negotiation, and
adjustment of family members. In addition, at some points in the care trajectory, the
caregiver role may require observation and supervision only, while at other points
(e.g., end-of-life) total physical care may be needed. Further, the caregiving role may
be assumed by some caregivers for only a few weeks, while others may serve in this
role for many months or years. In addition, there may be greatly varying demands in
intensity across diverse caregiving situations as the patient’s disease and treatment
status changes.
The literature includes a number of studies describing strategies to help caregivers

cope with living with cancer and its consequences (Pasacreta and McCorkle 2000).
The interventions include a range of educational, psychoeducational, support, and
skill-building strategies targeted at the patient and family caregiver as a dyad and at
family caregivers alone. The value of providing information to cancer caregivers has
been reported consistently in the research literature. Reported with equally consistent
frequency, however, is the difficulty that caregivers have in obtaining information
from healthcare professionals, particularly physicians and nurses. Despite the fact
that it is often difficult to obtain, caregivers report that information is a critical element
in helping them to cope with the patient’s illness. Times when caregivers appear to
be in the greatest need of information are: (a) at the time of diagnosis; (b) during
hospitalizations, especially at the time of surgery; (c) at the start of new treatments;
(d) at the time of recurrence; and (e) during the dying phase.
In addition to learning about the physical aspects of the illness, caregivers need
to be informed about the emotional aspects of the illness and recovery. Caregivers
want to know what to expect regarding the emotional aspects of the illness both for
themselves and the patient. In this manner, caregivers can be reassured proactively
that their own and the patient’s psychological distress is to be expected and is not a
sign of poor coping.
Sources of support for family caregivers have lagged far behind than those pro-
vided for patients. In particular, caregiving spouses report little support from health
professionals, often due to limited contact with physicians and nurses in hospital
and out-patient settings. However, within the last 5 years, support interventions have
been developed to provide direct psychological services to family caregivers, often
by different disciplines (e.g., social workers, psychologists, chaplains, nurses).
Longitudinal studies of caregiver adaptation to the cancer caregiving role are
needed to explore the complex interactions of caregiver physical and mental health,
including how usual self-care and health-promotion practices are altered given the
continuous and ever-evolving role of caregiving. Interventions and clinical trials that
assist the caregiver to engage in activities that promote health and build physiological
resilience must be explored, including exercise programs, good nutrition guidance,
social activation, regular sleep, and self-monitoring their physical and emotional
health.
Professionals need to be taught how to assess caregivers’ capacity to provide care
in light of the patients’ actual and anticipated needs. Professional caregivers need
to have the knowledge and skills to facilitate family caregiver’s role acquisition and
to determine when emotional distress extends beyond expected levels and warrants
treatment. Family caregivers need to be included in the patient’s plan of care and
kept informed about what to expect. Once professionals grasp that family caregivers
can play a critical role in enhancing patient clinical outcomes, they may be more
willing to assess the caregiver’s health and emotional capacity to provide care as a
partner in the process. When professional caregivers form partnerships with family
caregivers, together they can achieve the clinical outcomes they desire for the patient
with cancer and the caregivers themselves.
Genesis of the Rosalynn Carter Institute Caregiving Book Series
The development of this book was sponsored by Johnson & Johnson (J&J), an inter-
national healthcare business leader. With J&J funding, the Rosalynn Carter Institute
convened a series of 10 expert panels to address a wide variety of caregiving is-
sues. These included disability; Alzheimer’s disease; cancer; mental health; life
span caregiving; rural caregiving; intergenerational caregiving; education, train-
ing, and support programs for caregivers; interdisciplinary caregiving; and building
community caregiving capacity. The result of the collaboration with expert panelists
has culminated in the Rosalynn Carter Institute for Caregiving Book Series with
Dr. Ronda Talley serving as the series editor. We launched the book series in 2008
with the release of The Multiple Dimensions of Caregiving and Disability. The second
release in the series was Education, Training, and Support Programs for Caregivers.
The third release in the series was Rural Caregiving. This volume, Caring for a
Loved One with Cancer: Professional and Family Issues, is the fourth volume to be
released in the series.
Contents and Organization of Caring for a Loved One with

Cancer: Professional and Family Issues
Caring for a Loved One with Cancer: Professional and Family Issues is divided into
three main sections that address different areas of caregiver impact. These include:
(1) issues affecting the care triad, i.e., patient, family, and healthcare professional;
(2) issues in providing quality care, including education, support, end-of-life issues,
and (3) cross-cutting issues impacting caregivers and caregiving, including issues of
faith, economics, legal concerns, ethics, and cancer care policy and advocacy. Each
chapter provides an overview of the current status of the topic across four areas:
practice, research, education/training, and policy/advocacy, then offers recommen-
dations for future action in these areas. The closing chapter summarizes issues raised
across the chapters and offers a call for action in each area.
Issues Affecting the Care Triad
This section addresses specific care-related issues that have an impact on the patient,
the family, and the healthcare team.
Wilkie In her chapter, Wilkie discusses the needs of the patient with cancer, their
caregivers, and the family unit by addressing the issues relevant during the diagnostic
period. She suggests implementing a model of simultaneous care during this period,
a system that addresses development of a plan for both the treatment phase and
palliative care. Within this approach to the diagnostic period, the author further
describes the various roles that the professional caregiver might assume in response
to the dynamics of the patient and family. These include the role of consultant,
collaborator, or guide. Adoption of any one of these roles should reflect the patient
and their family’s desired level of autonomy or support during the various phases
of illness. These roles are explored in terms of the cancer care team, which might
take on these various responsibilities, and the types of training that are available for
assuming multiple aspects of care.
The emphasis of this chapter is specifically on providing family-centered care,
particularly assessment of the family’s values and priorities, as well as their ability
to manage the patient’s illness and treatment. Issues regarding training in family
assessment are explored.
McCorkle and Given This chapter provides a summary of the growing body of
literature addressing the impact of cancer on family caregivers. Family caregivers
experience both physical and emotional distress, as well as a lack of knowledge
and support to provide care to their loved ones. The authors explore the emotional
distress of family caregivers and the various factors that influence it, such as severity
and duration of illness, physical status of the patient, and the amount of care devoted
to cancer care. A variety of interventions aimed at helping caregivers are described,
and their limitations noted.
Goodheart Goodheart discusses the impact of economic and ethnic disparities in
the United States and the significant impact of these factors on healthcare and health
status among different socioeconomic and ethnic groups in this country. In turn, these
disparities have an impact on caregiving situations among individuals and families.
As examples, she describes instances of disparity in the rates of cancer for African
American s and Whites, and high rates of uninsured Latinos. The author also cautions
against creating stereotypes that mask individual differences within cultural or ethnic
groups.
Although literature addressing disparities related to cancer care and caregiving
is limited, there is a large amount of information available that can be applied to
cancer, and Good heart summarizes this. Research on health disparities and care-
givers outlines a large number of significant outcomes for minority caregivers. These
include decreased work hours; compromised health status; variability in resilience
and knowledge; and increased reliance on religion for support, resourcefulness, and
hospice use when compared to the general population. In each of these areas, there
may be a positive or negative association, such as increased resilience and resource-
fulness, however, poorer health status among African American caregivers. Another
area of disparity is the unequal cancer treatment given to African American or His-
panic/Latino individuals. Gender disparities are also present, with women typically
receiving less caregiving than men. In addition to these factors, individuals from
minority groups also experience barriers to care. These include inadequate access
to services due to poverty, language and cultural barriers, and health professionals’
knowledge and attitudes.
Baile, Kettler, and Aaron Baile et al. discuss the importance of promoting collabo-
ration between the patient, family, and healthcare treatment team to optimize care for
both the cancer patient and their caregivers. They introduce the notion of creating a
“therapeutic alliance” among these three entities with the purpose of working toward
a cancer cure or minimizing its side effects. This approach emphasizes establishing
relationships that encourage mutual respect, strong communication and information
sharing, and negotiation and problem-solving among the members of the alliance.
Integration of caregivers into the treatment team has implications for practice,
research, and education, and the authors discuss these recommendations in de-
tail. The overall value of the chapter is in providing an overarching framework for
understanding and collaboratively addressing caregivers’ needs.
Issues in Providing Care
This section addresses the broad array of issues that caregivers face in providing
care to cancer patients. These include educational needs, short-and long-term care
needs, end-of-life issues, and the impact of cancer treatment’s changing status on
the caregiver.
Glajchen In her chapter, Glajchen reviews the current status of education, training,
and support programs for caregivers of patients with cancer. These topics are ex-
amined from the perspective of both efficacy, i.e., whether controlled trials show a
treatment effect, and effectiveness, whether the treatment transfers to real world pop-
ulations. Caregiver issues include unmet needs, the impact of caregiving on quality
of life, and cultural and ethnic influences on caregivers. Interventions include strate-
gies to increase knowledge, reduce anxiety and depression, provide medical care,
offer comfort through hospice and palliative care, and increase confidence through
problem-solving.
Glajchen notes that few effective strategies to address the needs of cancer care-
givers have been documented, and many have limitations. Educational interventions
have been developed in many settings, however, there is little outcome data to sup-
port them. Due to the variability in program type and setting as well as lack of
standardization, it has been difficult to compare interventions. Hospice services can
reduce anxiety and improve the quality of life and psychological status; however,
outcomes of counseling and support interventions vary depending on the needs of
the individual.
Bergamini and Hendrickson Several unique contributions to the discussion of care-
givers of individuals with cancer are offered in this chapter. First, the authors present
a discussion of the needs of caregivers at different points in the care trajectory of
patients with cancer. Second, they offer a conceptual model for evaluating caregiver
burden and quality of life effects. The authors suggest that the burdens of caregiving
are inversely related to caregiver’s quality of life. The model is then applied to the
discussion of various aspects of caregiving and their implications for the patient and
caregiver.
Finally, Bergamini and Hendrickson discuss the needs of caregivers of children
with cancer and the needs of youth caregivers. Caregivers of children with cancer
have similar needs to caregivers of adult cancer patients; however, the overriding
concerns of parents are different, focusing on providing emotional support to the
child and having accurate information. One unique aspect of this group is the strain
that caring for a child with cancer places on the marital relationship. Another group
that is discussed is young caregivers of individuals with cancer.
Jacobs A significant number of cancer patients become long-term survivors and may
present caregivers with additional burdens beyond those discussed in the previous
chapters. Much progress has been made in the areas of clinical care, research, and
advocacy for cancer patients in terms of short-term survival. Once they have survived
their cancer, however, these individuals may experience chronic illness-related bur-
dens, such as uncertainty of recurrence, physical impairments related to treatment,
and potential loss of identify and self-esteem.
In addition, there has been little research and few interventions designed for care-
givers to assist family members who are long-term cancer survivors. A number of
factors related to long-term cancer survivors have an impact on the caregiver. For
example, the greater the severity and course of disease, the more distress felt by the
family, especially the primary caregiver. This is particularly true for childhood cancer
survivors and their caregivers. The authors discuss obstacles that can impair fam-
ily support systems, including shifts in family roles, breakdown of communication
among family members, preexisting negative relationships among family members
and friends, and willingness of caregivers to accept support.
Balducci and LaCoursiere End-of-life caregiving issues are addressed by Balducci
and LaCoursiere. The authors present a theoretical framework that describes the
caregiving trajectory for a patient with cancer. Using this framework, the authors
provide a clear delineation of the caregiving tasks during this period as well as the
potential benefits and stresses to the caregiver.
Balducci and LaCoursiere provide information ranging from knowing what to
expect at specific points in the dying process to whom to call when the patient
dies. Education and research questions are outlined that specifically address this
period in the illness trajectory. The chapter is important in highlighting the special
responsibilities and needs of the caregiver during the terminal phase of the patient’s
illness.
Raveis In her discussion of the advances in cancer care, Raveis addresses the inter-
esting conflict between the positive changes in medicine’s ability to diagnose and
treat cancer, and the negative impact these changes often have on family caregivers.
On one hand, current developments in cancer research allow for earlier and more
accurate detection, less invasive diagnostic procedures, less radical surgery, reduced
side effects of treatment, broader availability of aggressive treatment to vulnerable
populations, and increased survivorship. On the other hand, each of these develop-
ments can increase the level of burden on family caregivers. The duration of care
and the demands of coping with treatment and disease-related side effects have in-
creased. Lastly, caregivers have to make difficult treatment decisions and are often
very stressed by the responsibilities of decision-making. As cancer care has shifted
from being primarily hospital based to home and community based, caregiving has
shifted as well, and costs to the caregiver are very high.
The author makes recommendations for future work in these various areas, with
the goal of addressing needs of caregivers through various stages of the disease.
Cross-cutting Issues Impacting Caregivers and Caregiving
The final section of the book addresses a variety of issues that can have an impact on
family caregivers. These range from spirituality in caregiving, to ethical and legal
issues, and finally to legal and policy questions. The chapters provide information
about the larger issues that caregivers must address beyond providing direct care to
their loved ones.
Puchalski Spirituality is an important dimension in the lives of cancer patients and
their caregivers, and this chapter provides an overview of the elements of spiritu-
ality that are relevant for these individuals. Pulchalski emphasizes that addressing
the spiritual needs of the caregiver is as important as addressing the needs of the
individual with cancer; however, addressing the spiritual needs of the caregiver is an
area that has been overlooked in terms of education and research.
In this context, spirituality is clarified as not necessarily religious in nature, but
rather it is a process that gives meaning and substance to one’s life. Addressing
spiritual needs can contribute to the care of the patient with cancer in several ways:
(a) it helps the caregiver to acknowledge and potentially alleviate the suffering of
the patient with cancer; (b) it is an area of knowledge that can assist the professional
caregiver to support the patient with cancer and their family; and (c) it is an area of
exploration that can help professional caregivers to understand their own spirituality.
Baldwin This chapter explores the economic aspects of cancer care and the financial
burdens that family caregivers experience. National cancer care costs have risen sig-
nificantly over the last decade, and changes in insurance coverage and management
of care have placed a large financial burden on family caregivers. Cancer care requires
expensive treatments in both hospital and community-based settings, and there are
also significant demands related to home care, transportation, medications, nutri-
tional needs, and lost wages of both the patient and the caregiver. Patients and their
caregivers who are poor face additional burdens related to unemployment, dimin-
ished access to healthcare, inadequate education, substandard housing, and chronic
malnutrition. These factors contribute to delay in seeking early care, thus affecting
both the incidence and survival of this population.
Frank-Stromborg and Burns In their chapter, Frank-Stromborg and Burns provide
an overview of key legal issues that the patients with cancer and their caregivers may
need to address. These include: (a) the obligation for family members to provide care;
(b) the legal issues that caregivers may need to address regarding decision-making;
and (c) the complexities of state regulations and laws regarding living wills, durable
power of attorney, and other documents that are relevant during treatment and end-
of-life care. The authors provide a helpful summary of the most current regulations
regarding Medicare and Medicaid, and reimbursement for various types of home care
and end-of-life care. Also addressed in this chapter are legal implications of care and
decision-making for individuals in lesbian, gay, or transsexual relationships.
Kaufman, O’Mara, and Ceccarelli Policy addressing the family caregiver’s has
received more attention at the federal level in recent years; however, the target of this
activity has been caregivers in general, not specifically caregivers of cancer patients.
Cancer patients often have specific needs that differ from the needs of the other
populations requiring caregiving, such as Alzheimer’s patients. In order to provide
the types of cancer care advocated by the authors in this book, appropriate policies
supporting cancer caregiving must be in place at the federal, state, and local levels.
This chapter provides a summary of existing policies that support family caregivers
and addresses the areas of deficiency. The authors conclude with recommendations
for further work in political advocacy for cancer patients and their caregivers.
Smith and Paulk End-of-life decision-making can be difficult for everyone involved
in caring for cancer patients, both professionals and family members. The purpose
of this chapter is to help increase healthcare professionals’ awareness of how ethical
issues and decision-making can impact caregivers of patients with cancer. The chapter
addresses both general ethical principles as well as issues that are specific to families.
The authors present several important areas of ethical care. These include: (a) an
overview of the four foundational concepts of clinical ethics: respect for autonomy,
nonmalfeasance, beneficence, and justice; (b) a discussion of the various levels of
competence of an individual to make a decision regarding treatment and end-of-
life options; and (c) a caution to healthcare professionals to be aware of cultural
differences regarding decision-making.
Smith and Paulk also provide a comprehensive review of the barriers to ethical
end-of-life care, addressing issues such as lack of advance planning on the part of in-
dividuals and their primary care providers; inadequate documentation of preferences
through living wills and assignment of healthcare proxies; and decision-making at
the end-of-life.
Summary
This book provides a comprehensive review of topics related to the care of patients
with cancer, the needs of the caregivers, and issues related to different stages of the
disease process. Broader issues such as legal implications, spiritual needs, ethical
considerations, and policy implications are also explored. Each of the chapters
provides an overview of the topic and makes recommendations for future work
in the areas of practice, education, research, and policy and advocacy, making
this book useful for a variety of readers. The format of the book allows the reader
to explore specific areas of interest or read the entire text, which will provide an
in-depth understanding of the issues that caregivers of patients with cancer face. It
is the hope of the editors that readers of the book will find this information useful,
especially when assisting caregivers of patients with cancer to provide optimal care
not only to their family members, but also to themselves as they move through the
course of the caregiving experience.
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Part I
Issues Effecting the Care Triad
Chapter 2
Diagnostic Issues: Family Dynamics and
Caregiving for an Individual with Cancer
Diana J. Wilkie and Stuart J. Farber
Annually, nearly 1.6 million Americans will be diagnosed with cancer (Siegel et al.
2011). For the vast majority of these people, their cancer care is delivered in out-
patient settings. Living with a new cancer diagnosis is a 24-hour experience, which
means that family caregivers face responsibility for much of the care needed by
persons diagnosed with cancer (Given et al. 1997). Caregivers’ responsibilities are
magnified by the many advances in cancer treatments, especially aggressive combi-
nation therapies that increase the complexity of patient needs over the trajectory of
the cancer experience. The care needs also are exceptionally complex, for the people
who will eventually die from their cancers.
This chapter addresses caregiving during the diagnostic phase of the cancer trajec-
tory, a phase in which family dynamics set an important context for cancer caregiving
throughout the other phases. Three models are presented to set a context for patient-
and family-centered cancer care. A case example showcases the current status of care-
giving during the diagnostic phase of cancer care. This case also highlights future
directions for research and ways to implement conceptual frameworks. Such infor-
mation can enhance the caregiving experience as patients and their caregivers begin
to navigate the acceptable options for curative and palliative cancer care treatments.
Conceptual Models for Cancer Care
As the patient and family begin the cancer caregiving experience at the time of
cancer diagnosis, three models are important to high quality cancer care: (1) the
cancer trajectory; (2) cancer resource allocation; and (3) the roles of the professional
D. J. Wilkie ()
University of Illinois at Chicago, 845 South Damen Avenue (MC802),
Chicago, IL 60612-7350, USA
S. J. Farber
School of Medicine, University of Washington,
Box 356390 Seattle, WA, USA
Caregiving: Research, Practice, Policy
22 D. J. Wilkie and S. J. Farber
Family Caregiving Needs
High
Medium
Low
Pre diagnosis Treatment Recurrence Death
Diagnosis Survival Re-treatment
Phase of Cancer Care
Fig. 2.1 Cancer trajectory
caregivers, especially in sharing the bad news of a cancer diagnosis. Each model
is briefly described and then discussed from the perspective of one patient and her
family caregivers.
Cancer Trajectory
Cancer caregiving begins with the first sign or symptom of a tumor and continues
over the entire cancer trajectory. After the patient notices and acknowledges the lump,
hemoptysis, bloody stool or elevated PSA level for example, diagnostic procedures
begin to determine if there is a malignancy and if so the type, stage, and other
characteristics. This diagnostic phase of the cancer trajectory leads to the many other
phases of cancer care including the treatment, survival with monitoring, recurrence,
re-treatment, and palliative and terminal phases (Fig. 2.1). The diagnostic phase of
the cancer trajectory helps to predict the course likely for each individual. At each
phase, the patient requires professional and family caregiving.
Unfortunately, the patient and family caregivers without previous experiences
with cancer do not know or anticipate the demands of caregiving over the cancer
trajectory (Faulkner et al. 1994a; Waldrop 2006). Those with previous cancer expe-
riences may approach the bad news with considerable anger (Faulkner et al. 1994b).
Professional caregivers play an important role in exploring the family’s prior expe-
rience with cancer and setting the stage for realistic hope (Kutner et al. 1999; Links
and Kramer 1994; Trask et al. 2008). Those experiences are an important context
for discussions about the patients’ probable cancer trajectory and ways that cancer
care resources should be tailored to meet the patient and family caregiver needs
(Shields 1998; Trask et al. 2008).
2 Diagnostic Issues: Family Dynamics and Caregiving for an Individual with Cancer 23
Fig. 2.2 World Health

Organization resource
allocation model: current
model of care for people Cancer Pain relief and
diagnosed with cancer treatment palliative care
(symptom
management)
Time of Time of
diagnosis Death
Fig. 2.3 World Health

Organization: proposed
resource allocation model for
people diagnosed with cancer
Cancer
treatment
Pain relief and
palliative care
(symptom management)
Time of Time of
diagnosis death
Cancer Resource Allocation
Over the cancer trajectory, most cancer resources have been traditionally allocated
during the diagnostic and treatment phases. The current model of resource allocation
emphasizes that most health care resources are focused on cancer treatment until it
is clear that the cancer cannot be cured, when the focus of care changes to pallia-
tive management of pain and other symptoms (Fig. 2.2; World Health Organization
[WHO] 1996).
Figure 2.3, however, shows an alternate simultaneous care model proposed by
the WHO (1996). In this simultaneous care model, from the first sign of cancer in
the diagnostic phase, cancer treatments and palliative care are implemented concur-
rently. Figure 2.3 shows that most of the cancer care resources are focused on cancer
treatment at the diagnostic phase, however, some are focused on palliative care.
Later in the cancer trajectory, the focus shifts to palliative care, however, antitumor
treatments continue as appropriate to control symptoms and improve quality of life.
The simultaneous care model is consistent with patient- and family-centered care at
the diagnostic phase as well as throughout the cancer trajectory. Descriptive research
findings support the feasibility and effectiveness of implementing the simultaneous
care model on patient level variables in people diagnosed with advanced stage lung
cancer (Pitorak et al. 2002, 2003). Although these findings are encouraging, little re-
search is available to document the effect of implementing the simultaneous model in
the early phases of cancer care, especially effects on caregivers (Bakitas et al. 2004,
2006, 2009a, b, 2010; Byock et al. 2006; Meyers et al. 2004; Temel et al. 2010).
Professional Caregiver Roles
Professional caregivers typically interact with patients and family caregivers in one
of the three typical roles: consultant, collaborator, and guide (Farber et al. 2002). All
of the roles require the use of communication skills and cancer expertise at the time
of a cancer diagnosis, however, several traits help define each role. Understanding
the relationship that professional caregivers share with the patient and their family
caregivers helps to clarify the most effective role for a specific case and provides
realistic hope about the future in the context of the cancer type and stage (Links and
Kramer 1994; Shields 1998).
Consultant. The consultant caregiver provides expert, professional information
about the cancer and treatment options to the patient, family, and other professional
caregivers (Farber et al. 2002). The consultant role is based on the consultant’s medi-
cal authority and expert cancer knowledge, the sharing of that knowledge with others
for educational purposes, and referral to other members of the cancer care team in
order to determine and support the diagnostic process and plan of care (Farber et al.
2002). The consultant presents information that helps the patient and family un-
derstand the cancer diagnosis, prognosis, and treatment. This information is often
presented through dialogue (Faulkner et al. 1994a), however, it can also be written
or available in forms such as videotapes (Cull et al. 1998) or audiotapes. The patient
or family decides which cancer therapy plan best meets their goals and needs. If they
are unable to make a decision, the consultant caregiver makes the decision based on
the cancer facts, e.g., the cancer type, stage, and available therapies (Farber et al.
2002).
Collaborator. In the role of collaborator, professional caregivers exchange informa-
tion with the patient and family to facilitate a common understanding of the cancer
diagnosis and illness experience, and they all work together to choose the cancer
treatment path (Farber et al. 2002). The collaborator role includes that of the con-
sultant and also includes additional traits. Based on his original research findings,
Farber (Wilkie et al. 2012) stated that the collaborator:
• “Acts as a coordinator, assuring all members of the team are providing patient
and family care harmonious with the treatment plan.
• Serves as a facilitator, working with the patient/family and other team members
to promote the care plan.
• Provides a therapeutic role by promoting healing through discussions and actions
with the patient and family regarding medical, psychological, spiritual, and social
issues related to the care plan.
• Is a team member, working within the care plan using and respecting other team
members’ skills.”
Farber (Wilkie et al. 2012) suggest the following set of questions assist the
collaborator to provide patient- and family-centered cancer care.
• “What have you been told about your condition?
• What do you feel is happening?
• What would you like to see happen?
• What are your other concerns?”
The patient’s and family caregivers’ responses to these questions help the collabora-
tor to develop a patient- and family-centered plan of care that addresses the patient’s
goals and safety as well as the complexity of care needed to implement the cancer
care treatment plan. The discussion should especially address the caregiving needs
and whether the family caregivers can meet them safely. In addition, the dialogue
helps the professional caregiver understand the resources available to meet these
caregiving needs. Asking the patient and family about their illness experiences helps
to identify and clarify the important issues for everyone, which typically include
physical, emotional, and spiritual concerns (Shields 1998). With this broader under-
standing of the illness experience, the professional caregiver is able to facilitate the
team members as they provide care. The collaborator uses relationships and personal
self to create a therapeutic experience for the patient and family. Both the professional
and personal connections of this role are important.
Guide. The guide role requires the professional caregiver to consult and collaborate
with the patient and family, showing them the way to accomplish their goals by virtue
of the guide’s greater understanding of the medical context and how to achieve the
patient’s and family’s needs within it (Farber et al. 2002). Farber (Wilkie et al. 2012)
suggests that the guide role includes two additional traits:
• Advisor—acting to promote a cancer care treatment path that is most appropriate
for the unique experience of the patient and family.
• Advocacy—assisting the patient and family in overcoming the barriers that impede
the path of their cancer care.
The advocacy role of the guide goes beyond using professional skills to augment
those of the patient and family. The guide also engages in direct supportive actions
on their behalf.
There is danger in the guide role not present when the professional caregiver
takes the role of the consultant or collaborator. The professional caregiver may be
taking the patient where the professional caregiver wants him/her to go, not where
the patient wants to go. Yet, without the professional caregiver’s active involvement,
the patient in need of guidance would find it extremely difficult to find a cancer care
path that would achieve his/her treatment goals (Wilkie et al. 2012).
Compared to the consultant and collaborator roles, the guide develops deeper
professional and personal connections. Unlike in the consultant role, the guide’s
efficacy is not solely based on professional knowledge. The guide invests enough
of him/herself to be personally involved. Both the guide’s professional and personal
selves become essential elements in providing care to this patient and family. As
a result, for the patient and family caregivers, no other professional caregiver can
easily replace the guide. If the guide is working as part of a team, this impact is not
overwhelming. There are other team members with whom to share the professional
caregiving role when the guide is not available. However, if the guide works inde-
pendently, this role can create significant tension and should be taken into account
when such a role is considered. What does the guide do when he/she wants to be
home with his/her family and the patient has a problem? When no one knows the
patient and his family quite as well as the guide does, the patient’s quality of care
will decline steeply when the guide is not involved. Despite these potential tensions,
the personal satisfaction of serving as a guide is high (Wilkie et al. 2012).
In summary, each of these three roles is important for professional caregivers to
deliver high quality care at the time of a cancer diagnosis and initiation of a cancer
treatment plan, be it for curative or palliative intent. None of the roles has a higher
or lower value (Farber et al. 2002). Which role the professional caregiver plays will
depend on many factors.
• What role does the patient and family wish?
• What role does the situation demand?
• What role does the professional caregiver feel comfortable playing?
Ultimately the role or roles the professional caregiver plays will be defined by the
relationship shared with the patient and family and the personal and professional
connections among all parties involved. Ideally, professional caregivers have the
ability to play all three of these roles. However, rarely is the ideal a reality in clinical
practice. Some professional caregivers are better or worse in each of these roles. It
is important for each professional caregiver to understand the roles he/she is capable
of performing and to recognize when the patient or family needs the support of
a role with which he/she is uncomfortable. In such a case, another professional
team member can be asked to provide this role, such as a nurse, consultant, mental
health therapist, clergy member, physician, or the hospice team. The professional
caregiver’s understanding and facility with each of these roles is a dynamic process
and will grow deeper over time. Most professional caregivers find that they continue
to grow and develop in skill and understanding of these roles during their entire
career (Balint and Shelton 1996; Emanuel and Emanuel 1992; Farber et al. 1999,
2002, 2003a).
Current Status
Stage of disease and the time that has passed since diagnosis are important variables
in the family’s responses to cancer (Woods et al. 1989). The diagnostic phase of
cancer care is associated with high levels of stress for both the patient and the care-
givers. During this time, they absorb the meaning of the cancer diagnosis and keep
appointments with specialists for second opinions and specific recommendations re-
garding the cancer stage, searching for the treatment options most appropriate for
the patient’s cancer. The stress evolves not only from the emotional work of coping
with the reality of the cancer diagnosis, but also from the enormity of the decisions
patients and family members make about the acceptable treatment course (Albrecht
et al. 2003). Patient- and family-centered cancer care during the diagnostic phase
sets the stage for addressing the stress and forging effective relationships among the
professional caregivers, patient, and family caregivers.
In order to provide high quality care to people with cancer and their families, pro-
fessional caregivers must elicit, document, display, and assist in implementation of
the patient’s wishes for cancer care, including disease modifying treatments, pallia-
tive and end-of-life care (Morrison and Morris 1995). Helping patients to articulate
their priorities sets the stage for family caregivers to participate most effectively in
the cancer care treatment plan. Attending to the patient’s wishes also requires the
professional caregivers to recognize that family dynamics are central to this process
(Grinyer and Thomas 2001; Lewis 1993; Lewis et al. 1993; Shields 1998; Stetz et al.
1994; Woods and Lewis 1995). Professional caregivers need to know that attending
to the patient’s wishes facilitates patient- and family-centered cancer care and it is
not assisted suicide or euthanasia if the patient opts not to accept disease-modifying
treatments.
The following case, Gypsy, exemplifies several important issues for patients,
family caregivers, and professional caregivers during the diagnostic phase of cancer.
As you read the case, identify the role her professional caregivers assumed, evaluate
the model for the care that Gypsy and her family received, and make some conclusions
about the family dynamics in this case. Gypsy’s Cancer Diagnosis. (© 1994 D. J.
Wilkie and D. B. Lawrence, modified with permission.)
Gypsy coughed bright red blood onto a tissue as she sat at the bedside of her husband, who
was dying from chronic renal failure. Gypsy knew at the moment she saw the blood that
she had lung cancer. After all, she had smoked one to two packs of cigarettes per day for 50
years, and her father died from lung cancer at age 42. She always knew she would get lung
cancer. Still it wasn’t easy when she heard the chest x-ray results at the same time that her
husband was so near to death. It was difficult for her to undergo diagnostic staging scans
only four days after he died and biopsy bronchoscopy two days before Christmas, two weeks
after her first hemoptysis.
Gypsy learned the test results from her pulmonologist as she awoke in the recovery room
without her family. She shared the news with her family as soon as she was able to see them.
A few days later in his office, the pulmonologist sat with her and her family to discuss her
options. He was gentle and kind as he told her that she had poorly differentiated nonsmall
cell lung cancer. It was metastatic to the other lung, both kidneys, and possibly the cervical
spine. He told her that surgery, chemotherapy, or radiation therapy would not cure her stage
IV lung cancer. He promised he would control her symptoms and keep her comfortable. He
also suggested that she see a medical oncologist and consider chemotherapy or radiation
therapy as a means to control the hemoptysis. She agreed to the consultation.
The medical oncologist met with Gypsy and two of her three family members. He sat down
next to Gypsy and talked with her about her lung cancer. As he talked, he drew pictures to
show her and her family members what he was saying. He showed her where the tumors
were in both of her lungs, both kidneys and her spine. He told her there were therapies that
could be used to control her cancer but that none of them would cure her cancer. He talked
about the advantages and disadvantages of each therapy and about not doing anything to
treat her cancer but doing everything possible to keep her comfortable. Then he asked her
which option she preferred.
Gypsy didn’t hesitate, she told him that, as a 73-year-old woman, she didn’t want to go
through chemotherapy; she didn’t want to lose her hair. She wanted to try radiation because
it was likely to help the hemoptysis, which by now was very disturbing to her. She didn’t
want to cough and bleed to death.
Gypsy started radiation therapy to her lung, driven daily to treatments by her son. Her son and
daughter also accompanied her when she saw her lawyer in order to deal with her husband’s
estate, revise her own will, and to specify her wishes in a living will. She created and signed
a durable power of attorney and a durable power of attorney for health care in which she
specified no home hospice; she did not want her son and daughter-in-law to take care of her,
as they had done for her husband. Although his death was peaceful and her son and daughter-
in-law valued the care-giving experience, Gypsy did not want them providing the level of
personal, intimate care to her that they had willingly provided to her husband; she could
accept that care from strangers, but not family. Gypsy discussed her wishes with her son,
daughter, daughter-in-law and her physicians. She told her family that she had purchased
cremation services for herself at the same time as she had taken care of her husband’s final
arrangements.1
Gypsy’s case demonstrates several important aspects of patient- and family-centered
decision-making at the time of diagnosis. Facilitating patient-centered decision-
making requires the cancer care team, which consists of the patient, family caregivers,
and professional caregivers, to reach consensus about the treatment goals. This
consensus is necessary despite the uncertainty and barriers to understanding and
accepting the cancer diagnosis, prognosis and the patient’s wishes (Farber et al.
2003b; Shields 1998).
In Gypsy’s situation, both physicians gave her the bad news in a humane way
that helped her and her family caregivers come to a common understanding of the
meaning of her medical diagnosis and prognosis (Buckman 1992; Shields 1998).
All family members were identified by name and family role and accommodated
in the small examination rooms (Buckman 1992). These practices are important to
create a welcoming environment for the family caregivers and integrate them into
the cancer care team (Speice et al. 2000). Professional caregivers understood which
family members were authorized to receive Gypsy’s health information subject to the
Health Insurance Portability and Accountability Act (HIPAA) of 1996 (HHS 2003),
and Gypsy signed appropriate permission documents to provide for ongoing commu-
nication between professional and her family caregivers. Research findings suggest
that an audiotape recording of the discussion could have helped family members who
were not present to reach a common understanding (Bruera et al. 1999).
Providing alternates to the office visit as a means of communicating with the
physician, such as telephone and e-mail, encourages caregivers to be active team
members (Speice et al. 2000). These methods allow the caregivers to be extra ears,
ask questions, recall details, take notes, and gather and share important information,
especially about symptoms (Speice et al. 2000). Together, the physician, Gypsy
and her family reached a consensus about her treatment goals, the critical first step
in patient- and family-centered decision-making at the time of a cancer diagnosis.
This outcome was facilitated by the physician eliciting both Gypsy’s and her family
caregivers’ understandings of the illness and expectations about the diagnosis and
prognosis (Farber et al. 2002; Speice et al. 2000).
1
From How can I be dying, I feel so good? Gypsy’s escape from lung cancer (1994), by D. J. Wilkie
and D. B. Lawrence, Washington State Cancer Pain Initiative News, 2(1), 1, 6–7. Copyright 1994
by D. J. Wilkie & D. B. Lawrence. Modified with permission.
Gypsy’s prognosis was less uncertain than many people must cope with when
their cancers are diagnosed. Her physicians clearly stated that they could not cure
her cancer, however, they promised they would do everything possible to promote her
comfort and emphasized that radiation therapy was integral to her long-term comfort.
This focus was consistent with the simultaneous care model (Fig. 2.3; WHO 1996).
Cancers diagnosed at earlier stages require considerable skill and expertise for the
health care provider to address the many uncertainties experienced by the patient and
family caregivers regarding the prognosis, especially if one or more family members
are health professionals (Frogge et al. 1998).
Gypsy clearly articulated her wishes, and by doing so demonstrated her under-
standing and acceptance of the diagnosis and prognosis. She also communicated her
values and priorities. Her family did not challenge her wishes because they recog-
nized and respected her need for control. Had Gypsy’s family focused on different
wishes, such as prolonging her life to lengthen the time between the deaths of both
parents, reaching consensus would have been more difficult.
All of Gypsy’s family members knew her diagnosis and prognosis, which facili-
tated communication among team members. Family dynamics regarding those who
know the diagnosis and those who do not can lead to difficulties for the entire cancer
care team. Speice et al. (2000) cite several strategies that professional caregivers
reported were useful in minimizing such difficulties:
• “Ask in advance how much information the patient wants the family to know
• Have interactions with the patient and family together, as much as possible
• Provide the same information to the patient and family
• Remind the family that the patient is the first priority
• Ask the family how they would feel if information was kept from them.”
Farber (Wilkie et al. 2012) recommends that patient- and family-centered com-
munication guide the team to a culturally appropriate way of disclosing the cancer
diagnosis to the patient, family or both. For example if a Chinese-American woman’s
son requests that she not be told her diagnosis, several questions can guide the team
to a culturally appropriate and family-centered response:
• Ask the patient, “Do you have any concerns about your health?” Allow her to say
what she understands.
• Next ask, “Do you have any questions about your health?” Respond to her reply
or if she gives an uncertain answer try another tack.
• Ask, “Do you want me to talk to you about your health or would you rather I talk
with your children?” She may reply that she wants you to talk to her children.
• Then ask, “Who do you want to make decisions about your health?” It is likely that
she will say her children, however, especially her son should make all decisions
about her treatment.
• Then ask her children to meet in a place where the discussion of diagnosis,
prognosis and treatments can continue in privacy and without interruption.
Using the questions in this example, the professional caregiving team will be able
to honor the family’s request to withhold disclosure of the diagnosis because it is
culturally appropriate and based on the patient’s wishes. These simple questions
provide the team with the guidance they need to minimize difficulties encountered
when the patient does or does not wish to know his/her diagnosis and prognosis or
to make treatment decisions. Similar questions can guide the professional care team
in determining which family members the patient wishes to be told and how much
and how they should be told (Faulkner et al. 1994a; Speice et al. 2000). This type of
patient- and family-centered communication can be very helpful with most families
and is critically important for families with dysfunctional family dynamics (Faulkner
et al. 1994b; Speice et al. 2000).
As the treatment plan is being developed, professional caregivers need to nego-
tiate a common point of view about the initial management path while maintaining
flexibility. The patient and caregivers benefit when the professional caregivers pro-
vide a context for the care that will be needed and specify who will provide the care,
the family caregivers or the professionals. Professional caregivers should expect dis-
equilibrium and help to restore balance in the family system while constructing a
new future for the patient and family. In doing so, Farber (Wilkie et al. 2012) sug-
gests the professionals should allow exploration of possible futures, and be mindfully
“present” to the patient and family by asking open-ended questions such as:
• “What do you think will happen in the coming weeks?”
• “What role does spirituality play in your life?”
• “What is important to you in your life?”
Exploring responses to these questions guides the professional caregiver to gain
insight about the patient’s and caregivers’ values and priorities. Farber (Wilkie et al.
2012) also stresses the importance of reminding them that the actual future is often
experienced through an extremely unpredictable and circuitous path, as documented
by his research with patients, family members, and providers (Farber et al. 2003b).
Application of Three Conceptual Models in Current Cancer Care
During the diagnostic phase of Gypsy’s lung cancer experience, the pulmonologist
acted solely in the consultant role. He used his expert skills and knowledge to di-
agnose her cancer and referred her to the medical oncologist for staging procedures
and treatment options.
Her oncologist also played the consultant role when he used his professional
knowledge to verbally describe and then illustrate the news about her cancer diag-
nosis. Although this role did not require a deep personal connection, her physician
was caring and competent, which was important to Gypsy and her family members.
Once Gypsy understood the knowledge provided by the professional caregiver, she
decided what the diagnosis and prognosis meant to her and decided on the appropri-
ate treatment, which was to accept the referral to the radiation oncologist. The family
caregivers were a part of this process and supported her decisions, and Gypsy and her
family made meaning of her disease through their interaction with her physicians.
The plan of care she selected was consistent with the WHO simultaneous care
model (Fig. 2.3; WHO 1996), in which radiation therapy was planned to control
her symptoms despite a diagnosis of advanced stage lung cancer. At the diagnos-
tic phase of her cancer care, Gypsy’s pulmonologist and oncologist both promised
attentive, aggressive comfort care and implemented a plan of care to initiate con-
trol of her symptoms. The rest of Gypsy’s cancer experience can be found on the
Toolkit for Nurturing Excellence at the End-of-Life Transition and is available from
http://www.tneel.uic.edu/.
Implications
Gypsy’s case shows how the simultaneous care model, which is implemented by
professional caregivers who enact a role consistent with the patient’s preferences,
can facilitate patient- and family-centered cancer care, beginning at the diagnostic
phase of cancer. These conceptual models have important implications for clinical
practice, research, and policy.
Practice. Similar to Gypsy’s case, many professional caregivers play the consultant
role as they interact with patients and family caregivers during the cancer diagnosis
phase and perhaps throughout the entire cancer trajectory. However, not all patients
are like Gypsy and her family. In some cases, the needs of the patient and family
caregivers differ and could be met better by the professional caregiver assuming
either the collaborator or guide roles (Davison et al. 2002).
Unfortunately, patient preferences and family dynamics as well as their needs
infrequently direct professional caregivers in their implementation of the three roles.
Although there are psychometrically valid and reliable measurements of patient pref-
erences for control in the cancer treatment decision-making process, it is not clear
if or how the three typical preferences (keep control, share control, and give away
control; Degner et al. 1997) correspond to the professional caregiver roles for other
phases of the cancer care process. Few tools have been validated as clinically useful
measures of family dynamics in cancer care (Real del et al. 1998). Patient and family
caregiver needs related to psychological and physical symptoms have been identified
as common in patients and family caregivers living with the new cancer diagnosis
(Darrow et al. 1998; Kristjanson and Ashcroft 1994; Wallberg et al. 2000; Wingate
and Lackey 1989). Uncovering these preferences and needs currently requires skilled
clinical interviews because screening tools appropriate for use in clinical settings are
lacking.
The simultaneous model of cancer care is becoming more commonly implemented
in clinical practice (Bakitas et al. 2009, 2010; Meyers et al. 2004; Pitorak et al. 2002,
2003; Temel et al. 2010). There is a critical need for additional emphasis on providing
concurrent treatment of the cancer as well as palliative care appropriate to the patient’s
symptoms (Byock et al. 2006). The diagnostic phase of cancer provides a golden
opportunity to initiate patient- and family-centered care that recognizes their current
and potential needs across the entire cancer trajectory (Albrecht et al. 2003).
Table 2.1 Examples of cancer education materials for caregivers at the cancer diagnosis
Type of education material Organization Source: web site, phone number,
other
General material for patients and National Cancer http://cancersymptoms.org/
professionals on each type of Institute
cancer
Comprehensive material for American Cancer http://www.cancer.org
patients, family, friends, Society (1-800-ACS-2345)
professionals. Some materials are
available in Spanish and specific
for people of Asian and Pacific
Islander heritage
Comprehensive clearinghouse for Ortho Biotech http://www.cancer.com/
web sites related to topics of Products, L.P.
interest to people living with
cancer
Material for patients and caregivers: Oncology Nursing http://cancersymptoms.org/,
Society http://www.ons.org/patientEd/
– For managing ten common CancerDiagnosis.shtml
symptoms related to cancer
treatments
– Resources for recently diagnosed
patients
Flow Chart for professionals to Palliative Medicine (Faulkner et al. 1994a, b)
communicate with patients and
family
Material for physicians on breaking Education in http://www.epec.net/EPEC/
bad news and communicating Palliative and End webpages/index.cfm
with patients and caregivers of Life Care
Material for health professionals on Toolkit for Nurturing http://www.tneel.uic.edu/
breaking bad news and Excellence at End
communicating with people of Life
about health concerns
Education and Training. Currently, professional caregivers are predominately

trained to use the consultant role, and they have insufficient flexibility in using
the collaborator and guide roles. Communication difficulties can occur when the
professional caregiver is unable to shift roles or lacks patient- and family-centered
communication skills. These communication difficulties also can inflame family
dynamics. Unless other members of the caregiving team assume responsibility for
patient- and family-centered communications during the diagnostic phase of cancer
care, gaps can occur in the caregiving process. Professional caregivers need to work
as a team to deliver patient- and family-centered cancer care, however, they often
lack the skills required for effective interdisciplinary work.
Education materials about cancer diagnosis and treatments designed for lay and
professional caregivers are available from a number of organizations. These materials
are readily available by calling or from web sites, a few of which are presented in
Table 2.1.
Research. Little available research addresses effects of the simultaneous cancer care
model for all people diagnosed with cancer. Like in Gypsy’s case, it is more likely to
occur in a cancer diagnosed at a stage clearly known for its high mortality within a
relatively short time such as stage IIB or stage IV nonsmall cell lung cancer (Pitorak
et al. 2003; Temel et al. 2010). Research in caregiving during the diagnostic phase
of cancer is further impeded by a lack of clinically useful measurement tools that
assist professional caregivers in selecting the role most appropriate for patient and
family caregivers at various points in the cancer trajectory.
Policy. Current reimbursements for cancer care support the services of the physician,
the captain of the professional caregiver team. This reimbursement plan negates the
reality that multidisciplinary team is critical to effective patient- and family-centered
care, not only at the diagnostic phase of cancer care but also throughout the entire
cancer care trajectory.
Future Needs and Directions
Improving cancer care during the diagnostic phase requires a paradigm shift for
clinical practice. Additional research and policy changes are important to imple-
menting a model of simultaneous care that addresses patient and family preferences
for caregiving roles.
Practice
Time-efficient screening tools are desperately needed in order to increase professional

caregivers’ insights into patient preferences, family dynamics, and the professional
caregiver role most appropriate for the patient and his/her family caregivers. Given the
explosion of informatics, computer-based tools can be used to capture, share, inter-
pret, and implement patient wishes with consideration of family dynamics (Davison
et al. 2002; Wilkie et al. 2003). Use of these tools can facilitate more efficient and
effective cancer care, beginning at the diagnostic phase.
Education and Training
Professional caregivers need to be trained to use all roles as indicated by the patient’s
wishes and family dynamics. Improved communication skills are critical to patient-
and family-centered cancer care.
Research
Refinement is needed for the existing patient preference tools (Degner et al. 1997)
to also address family caregiver preferences. Development and testing of tools that
identify preferences for professional caregiver roles and evaluate family dynamics at
the diagnostic phase of cancer should be a priority for the National Institutes of Health
(e.g., National Cancer Institute [NCI], National Institute on Aging), the American
Cancer Society, and other cancer or family-oriented research organizations.
Policy
Continuity of cancer care from diagnosis throughout the cancer trajectory requires
a multidisciplinary team effort and should be reimbursed accordingly. Indicators of
success for NCI-funded comprehensive cancer programs should include measures
of patient- and family-centered care throughout all phases of the cancer trajectory.
Conclusion
In conclusion, as showcased by Gypsy’s story of her lung cancer diagnosis, a number

of conceptual models inform patient- and family-centered cancer care at the diagnosis
phase of cancer care. Professional caregivers should consider not only the phase
of the cancer care, e.g., diagnosis, but also how to incorporate cancer treatments
simultaneously with palliative care therapies. Additionally, the role assumed by
the professional caregiver, e.g., consultant, collaborator, or guide, should fit the
patient preferences and family dynamics. Clinical practice needs are tangled with
education, research and policy changes that support a team approach to cancer care.
The cancer care team must include professional caregivers, patients, and family
caregivers all working toward patient-centered and family-focused care in order to
overcome current deficits in cancer caregiving.
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Wilkie, D. J., Brown, M. A., Corless, I., Farber, S., Judge, K., Shannon, S., et al. (2012). Toolkit
for Nurturing Excellence at the End-of-Life Transition for Nurse Educators (TNEEL-NE) CD
ROM [CD-ROM, Version 2.0]. Seattle, WA: TNEEL Investigators.
Wilkie, D. J., Judge, M. K., Berry, D. L., Dell, J., Zong, S., & Gilespie, R. (2003). Usability
of a computerized PAINReportIt in the general public with pain and people with cancer pain.
Journal of Pain & Symptom Management, 25(3), 213–224.
Wingate, A. L., & Lackey, N. R. (1989). A description of the needs of noninstitutionalized cancer
patients and their primary care givers. Cancer Nursing, 12(4), 216–225.
Woods, N. F., & Lewis, F. M. (1995). Women with chronic illness: their views of their families’
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Chapter 3
The Emotional Responses of Family Caregivers:
Living with Cancer and Helping Families Cope
Ruth McCorkle and Barbara Given
Although individuals and families have been living with cancer and its consequences
for years, it was not until the National Cancer Act was signed in the early 1970s
that cancer became recognized as a major public health problem. Initially, research
and clinical resources focused primarily on finding novel discoveries to try to cure
different types of cancers and developing comprehensive cancer centers to house
clinical and basic scientific efforts. As more and novel cancer treatments became
available that prolonged life expectancy, cancer was increasingly associated with
chronicity, remissions, and exacerbations; thus, its emotional impact on patients and
families became increasingly evident. Gradually a body of literature evolved that
documented the impact of cancer on patients and demonstrated that the diagnosis
was a time of crisis (Krouse and Krouse 1982; Northouse et al. 2000; McCorkle and
Benoliel 1983; Weisman and Worden 1976). Simultaneously, there were scientific
developments that documented that families also experienced a crisis associated with
a cancer diagnosis, its subsequent treatment, and in most cases premature death.
(Benoliel and McCorkle 1978; Giaquinta 1977; Hampe 1975; Given et al. 2004;
MacVicar and Archbold 1976; Vachon 1982; Wellisch et al. 1978).
Recent years have seen an escalating trend toward early discharge of hospital-
ized patients and a shift of high utilization of ambulatory care services. As a result,
increasing numbers of family caregivers are caring for cancer patients at home (Caw-
ley and Gerdts 1988; Conkling 1989; McCorkle and Given 1991; McCorkle et al.
1993). This demand on families is not new, although the caregiver role has changed
dramatically from promoting convalescence to providing high technology care and
psychological support in the home. Members of the patient’s family are of vital im-
portance in meeting the patient’s physical and psychosocial needs and accomplishing
R. McCorkle ()
School of Nursing, Yale University, 100 Church Street South, New Haven,
CT 06536-0740, USA
B. Given
School of Nursing, Michigan State University, B515-C West Fee Hall, East Lansing,
MI 48824-1315, USA

40 R. McCorkle and B. Given
treatment goals (Ganz 1990; Mor et al. 1987). The burden of caring for patients with
a diagnosis of cancer however, may adversely affect families who lack adequate
resources or who are insufficiently prepared for this new complex role. There is
mounting evidence that changes in family roles and the burden placed on family
caregivers may have negative effects on the psychological stability of both cancer
patients and their caregivers (Given et al. 2004; McCorkle et al. 1993), particularly
on the caregivers’ emotional status and their ability to cope with increasing demands.
Family caregivers are now, due to the pressures from the health care system, ex-
pected to play a major role in assisting with the management of the disease, treatment,
and treatment-related side effects. Cancer and its treatment may alter family identity,
roles, communication patterns, employment, and daily functioning. These changes
can occur over an extended period of time as family members deal with unfamiliar
situations and demands as cancer treatment changes and continues, as the disease
progresses, or as patients recover and survive.
Family caregivers indicate they feel ill prepared, have insufficient knowledge, and
receive little assistance from the formal healthcare system to acquire the knowledge
and skills they need to provide care. Family caregivers may not know how to take
on the caregiving role, may be unfamiliar with what care they must provide, and
may not utilize available resources (Given and Given 1992; Oberst et al. 1989). The
impact of caregiving on cancer patients can be critical to the health and emotional
well-being of the caregiver (Given et al. 1993; McCorkle et al. 1993; Northouse
1988; Oberst et al. 1989; Sales 1991; Schulz and Beach 1999; Sherwood et al. 2005;
Weitzner et al. 1997b), and caregivers often neglect their own healthcare needs in
order to assist their loved ones.
Family caregiving has been conceptualized as the provision of unpaid aid or as-
sistance by one or more family members to another family member related to a
healthcare problem (beyond that required as part of normal, everyday life). Care-
giving may not always be distinguished from aid and assistance given as a part of
the normal family relationship, so it may be difficult for family members to label.
Some of the difficulty in defining the family caregiver role exists in the history and
nature of the relationship between the caregiver and the care receiver, as well as the
ambiguous and evolving demands of care that change and evolve due to both the
nature of the disease trajectory as well as the complexity of the cancer treatment.
The purpose of this chapter is to provide a comprehensive synthesis of the lit-
erature on family caregivers’ emotional responses to the role of caregiver and the
identification of strategies for coping with cancer and its impact. For the review, a
combination of computerized and manual searches was used and supplemented by
the personal library collection of the authors. As both the interdisciplinary and nurs-
ing intervention studies were of interest, diverse databases were searched using the
following key words: caregiver, caregiving, family, cancer, emotional distress, mood,
depression, interventions, quality of life, and coping. Initially the search sought arti-
cles from 1976, and a large number of articles on family and caregiving were found,
however, the majority of these articles was descriptive in nature and documented
the need for caregiver interventions. Articles were retrieved through computerized
databases, (MEDLINE® , CINAHL® , PsychINFO, and HealthSTAR® ). For the final
3 The Emotional Responses of Family Caregivers 41
review, data-based studies that described emotional responses of family caregivers

and interventions aimed at helping caregivers cope with their caregiving role and
their emotional responses were selected. Although the original intent was to limit
the review to studies that associated interventions with emotional outcomes, a lack
of well-delimited outcome variables along with few rigorous intervention trials were
revealed as major gaps in the literature.
Caregiver Emotional Responses
Descriptive studies have provided evidence that family members of patients with can-
cer experience distress due to their caregiving roles, and this distress continues over
time (Given et al. 1990b, 1993; Northouse et al. 2000; Northouse and Peters-Golden
1993; Oberst and Scott 1988; Raveis et al. 1998). Recognition of the emotional
burden that the diagnosis and treatment of cancer places on family caregivers has
appeared in cancer literature since the early 1980s. See Table 3.1 for a summary of
descriptive studies.
Caregiving emotional distress may be related to direct care tasks, complex med-
ical procedures, disruption of daily routines, role overload, or the need to provide
emotional support. A number of review articles describe the emotional impact of
cancer on family caregivers (Cooley and Moriarty 1997; Kristjanson and Ashcroft
1994; Laizner et al. 1993; Northouse et al. 1995, 2000), including the presence of in-
creased symptoms of depression, anxiety, psychosomatic symptoms, restrictions of
roles and activities, strain in marital relationships, and poorer physical health among
family caregivers. Various dimensions of caregiver reactions have been identified by
previous researchers (Given et al. 1992; Stetz 1987, 1989). Depression and anxi-
ety have most often been examined as indicators or symptoms of caregiver distress.
Descriptive studies have documented that caregivers experience anxiety and depres-
sion, as well as a sense of helplessness and fear (Nijboer et al. 2001; Northouse et al.
1995; Oberst et al. 1989; Sherwood et al. 2005; Siegel et al. 1991; Weitzner et al.
1997b). Researchers report only about 25–30% of cancer caregivers are depressed
or emotionally distressed.
Overall, caregiving is more stressful for women (both wives and daughters) than
for men (both husbands and sons; Baider et al. 1996; Nijboer et al. 2001; Northouse
et al. 1995, 2000; Raveis et al. 1998; Sales et al. 1992). In addition, wives, husbands,
daughters, and sons appear to approach the practice of caregiving in different ways,
which may affect caregivers’ emotional outcomes (Gerstel and Gallagher 1993;
Raveis et al. 1998). In married couples, husbands caring for wives with cancer
focus on caregiving tasks while continuing their own activities and interests, such as
gardening and yard work; they do not expect care needs to interfere with these ac-
tivities. Wife caregivers, however, give priority to their husbands’ needs and choices
(Miller 1990) and may consider their own needs secondary. Wives focus attention on
the interpersonal aspects of caregiving—such as how their relationships with their
husbands are changing—and find changes to be uncomfortable. The differences
Table 3.1 Summary of Caregiver Descriptive Studies
42
Author Conceptual Design Sample Measures Results

Framework
Cameron et al. Life style Descriptive 54 Caregivers of patients with Caregiver assistance scale. Education and lifestyle
(2002) interference advanced cancer. 25 Caregiver impact scale. interference correlates with
and illness Women. 38 Spouses. Mean Profile of mood states. emotional distress. More distress
intensive age 60. when limited in their valued
activities and interests. No
gender differences.
Carey et al. (1991) Cognitive Descriptive, 49 family caregivers of Hardiness, caregiver Burden, hardiness, and caregiver
appraisal, conve- patients getting burden, caregiver health health predicted 50% of negative
stress and nience, chemotherapy. 25 men, 25 caregiver appraisal. Less
coping model cross women. Convenience, hardiness, more burden.
sectional cross sectional Negative appraisal and age
explained mood disturbance.
Fang and Manne Psychological Descriptive 197 cancer patients and Psychological distress of Higher levels of patients functional
(2001) health distress longitudinal spouses. Solid tumors 32% mental health inventory. measurement associated with
psychology (6 mo.) local rest late stage. Mean Spaniers dyadic poor marital quality it only
age 56 (SDII) spouse 108 adjustment. CARES for related to distress at wave I.
men, 89 women patient. Patient distress mediated impact
of functional impairment on
spouse distress, at all times.
Given et al. (1993) Social stress and Cross 196 convenience community CESD, CRA, symptom Caregiver optimism proved to be a
health psychology coping sectional breast solid tumors distress, OARS. Life significant predictor of mental
sample orientation test health and reactions to caring.
Haley et al. (2001) No framework Descriptive 40 dementia and 40 lung ADL, CESD memory and Caregiver showed depression
cancer spouse. behavior check lest life lower life satisfaction and poorer
Convenience sample of satisfaction. MOS - physical health than non
terminal patients health perception caregivers cancer caregivers
physical function. more hours of care. 57% wives
and 29% husbands at clinical
depression
R. McCorkle and B. Given
Table 3.1 (continued)
Framework
Kristjanson et al. Family model Descriptive 89 with advanced cancer Fulfillment, family Patients quality of life correlated
(1996) fulfillment longitudinal functioning, family with family health. Families
theory health index more stressed than normative
population
Nijboer et al. (2001) Social and Descriptive 148 dyads with colorectal CESD, care tasks. Social Effect of social and psychological
psychological longitudinal cancer support. List interactions. resources on caregiver.
resources over 6 Mastery extraversion and Experiences small. No effect on
months neuroticism. CRA depression. Caregiver with low
daily support and those with low
mastery perceived caregiver in
negative way and were more
depressed.
Nijboer et al. (2000) No framework Longitudinal 6 N=148. Colorectal. 64% CRA. CESD. Co-morbidity. Women, younger caregiver and
the gerontologist months female caregiver X age 63. Rotterdam symptom those with higher SES
3 The Emotional Responses of Family Caregivers
SDCII checklist experienced caregiver more

negatively. Suggest that
caregiver distress is
multi-dimensional
Nijboer et al. (1999) Nijboer’s Longitudinal 148 dyads of newly Marital scale CESD. Low burden. Depression mean 9
framework descriptive diagnosed colorectal Rotterdam symptom list. (SD8). Those with stoma more
based on disease. 54 men, 54 women Activity restriction. CRA burden and more depression.
Given’s. caregivers. Mean age 63 Patient dependency correlated
Cognitive with depression of caregiver.
stress theory
Northouse et al. Stress and coping Descriptive 81 women with a first Social support question, Symptom distress and
(1995) uncertainty recurrent breast cancer, and adjustment (PAIS), hopelessness accounted for the
husbands uncertainty, symptom most distress and husbands
distress, hopelessness adjustment. Wife and husbands
adjustment scores were related.
43
44

Framework
Northouse et al. Cognitive Descriptive Breast. 58 couple’s malignant Smilktstein stress. Dyadic Male and female adjustment
(1998) appraisal longitudinal breast. 73 benign. adjustment. Family corresponded.
model of stress Cognitive appraisal model apgar. Mishel
of stress uncertainty. Beck
hopeless. BSI, BA IS
Northouse et al. Stress and coping Longitudinal 131 couples. 58 with a breast Partners adjustment scores Strongest predictor of husband
(2000) descriptive cancer diagnosis and 73 (PAIS) adjustment was hopelessness
with a benign diagnosis and own baseline level. Husband
and wife adjustment affected
each other. Individual variables
explained 32% husband’s
distress and 57% role problems
Northouse et al. Cognitive Descriptive 56 couples colon cancer PAIS, hopelessness, BSI Emotional distress over time
(2000) appraisal patients. Average age 61. correlation between patients
model of 91% Caucasian. spouse adjustment marital
stress. satisfaction predicted spouses
adjustment
Oberst and Scott Descriptive, Longitudinal 40 patients and their spouses. State anxiety, brief Patient and spouse distress similar.
(1988) stress and Non terminal, treated symptom index, Spouse less distressed to 10 days
coping surgically vulnerability index at home. High vulnerability at
90 and 190 days with clinical
depression
Oberst et al. (1991) Cognitive Cross 72 patients with radiation. 35 Self care burden POMS Symptom distress predicted burden
appraisal stress sectional women, 37 men
and coping
Framework
Raveis et al. (1998) No framework Descriptive 164 cancer outpatients age Constraints of caregiving, Predictors of depression were
listed 60-90 and their adult CESD, caregiver burden constants of caregiving and
caregivers caregiver burden. No patient
characteristics were productive,
health limiting condition. Sense
of filial obligation and greater
caregiver burden correlated with
CESD
Raveis et al. (1999) No framework Descriptive 164 patients with adult STAIS scores. Constraints Health limiting condition greater
listed Panel study daughters mean age 39 (SD of caregiving. Caregiver sense of filial obligation.
8). 90% white. Recent burden appraisal of care Increased caregiver burden.
diagnosis situation Correlated with caregiver burden
anxiety. Overload with caregiver
responsibilities correlated with
3 The Emotional Responses of Family Caregivers
anxiety. More tasks actually

lowered anxiety
Siegel et al. (1991) No conceptual Convenience 295 spousal caregiver. Solid Burden. Disease burden. Wives experienced more burden.
annals of model. sample tumors 96%. Caucasian Reduced activity days. Wives more time burden. Extent
oncology. 64%. Wives mean age 60 Intensity of burden of patient disease more burden.
Number of days restricted more
burden. Number of symptoms
associated with burden
Stommel et al. No framework Longitudinal 307 caregivers of patients CRA Caregiver Patient health, nor caregiver
(1990) descriptive with solid Tumors involvement. Informal process linked to burden.
support/ formal support. Caregiver depression dominates
Service utilize financial. caregiver perceptions burden but
CESD depression independent of
current care situations.
Depression independent of
variations in care processes
45
46

Framework
Given et al. (2004) Family Prospective 152 caregivers of patients on CRA Caregiver Caregivers 45-54 highest
caregiving Longitudi- chemotherapy who died involvement. CESD depression. Caregivers 35-44
model nal patient symptoms. sense of abandonment. Younger
caregivers description in lives
Sherwood et al. Family Inception 488 caregivers of patients Cognitive scale. Care recipients mental health,
(2005) caregiving cohort of over 65 Neuropsychiatric scale. functional status and recency of
model caregivers ADL, IADL. Recency of care demands predicted
care demands. CRA. caregiver burden. Burden
CESD predicted depressive symptoms
Coristine et al. No framework Focus groups 30 caregivers following death Non-spouses had the most roles to
(2003) of caregiver manage and they had the most
difficulty with care. Some
caregivers could not continue
care. Unable to satisfy patient
wishes
Grunfeld et al. No framework Longitudinal 89 caregivers of women with Kainofsky SF36. HAD, Caregivers became more depressed
(2004) study advanced breast cancer Zarit Burden. Family care as they moved from palliative to
terminal care, had higher
burden. Burden predicted
anxiety and depression.
Caregiving affected work
Kurtz et al. (2004) Family Inception 491 cancer patient caregiver SF36. Physical Functioning. Caregiver perceptions of burden
caregiving cohort of dyads CRA. CESD played central role on depression
model caregivers and physical health contextually
longitudinal patient symptoms, patient
depression, comorbidity, cancer
site and living arrangement
between wives and husbands have been attributed to normative roles. Women are
also more emotionally distressed by the caregiving role and care demands.
Nijboer et al. (1999) studied colorectal cancer patients and their partners. Care-
giver experiences were assessed by the Caregiver Reaction Assessment (CRA) scale,
which contains four negative subscales (disrupted schedule, impact on finances, lack
of family support, and impact on health) and one positive subscale (self-esteem).
The mental health of caregivers was assessed in terms of depression and quality of
life. The researchers concluded that although caregiving may lead to depression, es-
pecially in those experiencing loss of physical strength, caregivers may sustain their
quality of life through increased self-esteem from caregiving.
Providing emotional support can be as—or more—emotionally burdensome than
providing direct care (Carey et al. 1991). Changes or restrictions in work roles
and career opportunities, increased financial costs and demands, and strain in mar-
ital relationships all lead to increased burden (Bradley et al. 2004; Grunfeld et al.
2004; Stommel et al. 1995; Weitzner et al. 1997a). Raveis et al. (1998) found that
care-providing daughters who had an existing health condition themselves reported
limitations in their ability to care and reported higher levels of depression.
These accounts present persuasive documentation that caring for a person with
cancer is a stressful experience and can have major emotional and physical con-
sequences for caregivers. In their review of caregiver research, Sales et al. (1992)
concluded that a significant number of cancer caregivers exhibited emotional dis-
tress and physical symptoms. Predictors of emotional distress included a number of
illness-related variables, including more advanced stages of cancer, disability and
complex care needs (Sherwood et al. 2005).
In general, the descriptive literature on caregivers of cancer patients highlights:
(1) the increasing number of complex tasks assumed by cancer caregivers; (2) the
high proportion of unmet emotional and physical caregiver needs; (3) the subjective
nature of the caregiving experience which encompasses both positive and negative
elements; and (4) the conceptualization of caregiver burden as directly linked to
negative caregiving reactions.
Characteristics of Caregivers at Risk for Emotional Distress
There are a number of factors related to increased caregiver emotional distress and
should be considered when planning interventions. These include, however, are
not limited to gender, age, socioeconomic status, living arrangements, family role,
developmental stage, and clinical variables associated with the patient.
Gender has been shown to be differentially related to caregiver distress. Levels
of depression among caregivers are highest for wives, followed by daughters, then
other female caregivers, sons, and finally husband caregivers (Stommel et al. 1990).
Spousal caregivers appear to be at particular risk for caregiver distress, because
they typically provide the most extensive and comprehensive care, maintain their
role longer, tolerate greater levels of disability among family members than adult
children and other nonspousal caregivers, experience more lifestyle adjustment, and
exhibit lower levels of well-being (Given et al. 2004; Nijboer et al. 2000; Northouse
et al. 2000; Siegel et al. 1991).
Age contributes to caregiver distress (Nijboer et al. 2000). Intergenerational care-
givers are often middle-aged (adult caregivers) of parents, and are more likely to
suffer role conflicts due to multiple and competing role demands, whereas intragener-
ational caregivers suffer from caregiver role entrenchment. Elderly spouse caregivers
may have fewer defined roles to perform than adult children caregivers and may re-
spond to demands of cancer care by isolating themselves from social and family
roles to become completely focused on providing care. Older and aging families
living with cancer may have other problems related to care tasks, such as decreased
physical abilities resulting from the caregiver’s own frailty and comorbid conditions
such as diabetes and cardiovascular disease, social isolation, and diminished family
resources. Caregivers of younger patients may report more distress from care than
those caring for older patients (Given et al. 1993; Schumacher et al. 1993). Older
caregivers may have more established patterns of decision making that may ease the
decision-making process related to cancer (Coristine et al. 2003).
Cancer care is most burdensome for patients and caregivers with low incomes and
limited financial resources if there are substantial out-of-pocket costs. Unemployed
or low-income caregivers may experience more emotional distress because they
have fewer resources and less capacity to respond to distress. Davis-Ali et al. (1993)
concluded that higher-income families may not concern themselves with the financial
hardships of cancer care because they are able to purchase or seek resources. Income
and overall financial concerns cause distress for caregivers during long periods of
caregiving (Clipp and George 1992), as resources become depleted.
Living arrangements may need to be altered, either temporarily or permanently, to
manage the care of cancer patients. The patient may move into the caregiver’s home to
facilitate care, or family members may move into the home of the patient to provide
care. Secondary caregivers are much more involved in parental care than spousal
care situations. When a patient is widowed, single, or divorced, more caregivers are
involved. Studies show that caregivers who live with the person with cancer are more
depressed than those who live in separate households (Stommel and Kingry 1991).
Current and previous role relationships between patients and their family care-
givers need to be considered. Family caregiving is a stressful normative expectation
with the feelings of obligation and attachment, and individuals often assume care-
giving responsibilities to show that they are committed to supporting the family
(Cicirelli 1992). Both recipient and caregiver bring a history of interactions that may
enhance or complicate the care process. Therefore, it is important to consider not
only the influence of family relationships but also the quality of relationships in terms
of impact on the evolving care recipient–caregiver relationship (Nijboer et al. 1999;
Northouse et al. 2005).
Family developmental stage may differentially influence caregiver’s emotional
responses and availability because roles often conflict, compete with, and are
disrupted by care demands (Kristjanson and Ashcroft 1994). If caregiving is
required “off time” in younger families, care challenges are even more burdensome
and emotionally stressful because not only are they unexpected, however, the
needed support may also not be available. Kristjanson and Ashcroft described
how emotional distress may be greater during a transition from one developmental
stage to another, and it is during transitions that most family dysfunction is likely
to occur. Spouses reported decreases in family functioning and social support
combined with increases in emotional distress over time. Families with better
spousal communication may experience less disruption, role conflict, and role strain
over time (Nijboer et al. 2001; Northouse et al. 1995, 1998, 2000; Kurtz et al. 2004).
Patient-related Factors for Caregivers Emotional Distress
There are a number of factors associated with the clinical characteristics of the patient
that may influence the caregiver’s emotional responses. For example, a relationship
between a caregiver’s emotional distress and actual care demands is assumed to exist,
however, has not been systematically examined. Nor has the amount of time or hours
per day devoted to cancer care, the inability to control timing of care, the intimacy of
care required, and the amount of physical care provided been systematically exam-
ined. The severity of illness and complexity of treatment that make care necessary
are integral to determining the risk for negative caregiver reactions and emotional
distress. The stage of cancer; length of illness; phase in treatment trajectory; symp-
tom experience; impact of cancer and treatment on functional, psychological, and
mobility status; and patient role changes will influence the cancer care demands of
families and thus, the level of concurrent emotional distress (Given et al. 1993; Kurtz
et al. 2004; Morita et al. 2002; Sherwood et al. 2004).
Severity and duration of patient illness, symptoms, and physical decline are
thought to be related to caregiver emotional distress. Oberst and James (1985)
and Oberst and Scott (1988) have documented emotional reactions of family
caregivers in the early phase of diagnosis, treatment, and threat of illness. Con-
stancy in adjustment—that is, change in patient status, or either improvement or
deterioration—may influence the caregiver’s emotional responses over time. Care-
giver emotional distress may continue even after patient status improves (Given
et al. 1993; McCorkle et al. 1993; Northouse and Peters-Golden 1993) or varies with
treatment type, phase, and stage of disease. In the terminal stages, families may be
overwhelmed with the demands of not only the illness, but also poor prognosis and
threat of approaching death. Patient reactions to illness appear to influence family
member reactions, and at times family member emotional distress equals or exceeds
that of the patient (Carey et al. 1991; Given et al. 1990b).
Several small-scale studies have shown that recurrent disease may be associated
with caregiver emotional distress (Given and Given 1992; Northouse et al. 1995).
However, Schumacher et al. (1993) found that depression among caregivers of pa-
tients with recurrent disease was significantly related to caregiver gender, perceived
adequacy of social support, and coping efficacy rather than recurrent disease per se.
Patient symptom distress may also lead to caregiver emotional distress, which
may be manifested as anger, anxiety, frustration, or depression. This distress af-
fects the demands on family caregivers’ ability to provide care, or even to care for
themselves. Care for difficult symptoms, such as pain management, influences the
level of caregiver strain (Kurtz et al. 2004; Miaskowski et al. 1997; Musci and Dodd
1990). Research on the effects of patient functional status on caregiver distress have
been mixed. Severity of functional impairment (e.g., activities of daily living, cogni-
tive and social functioning) and severity of symptoms have been found significantly
related to caregiver emotional distress (Clipp and George 1992; Given et al. 1993;
Kurtz et al. 2004; Oberst et al. 1989). Impaired patient cognitive function produces
higher caregiver distress than impaired physical functioning. Family caregivers may
adapt to the demands that impaired physical functioning places upon them, how-
ever, caring for patients with cognitive deficits produces high and sustained levels of
caregiver emotional distress (Carey et al. 1991).
Interventions to Help Caregivers Cope
There are a number of interventions that have been suggested to assist family care-
givers of cancer patients. The difficulty, however, is that most do not meet the
methodological rigor needed to have confidence in findings that are available. The
literature includes a number of studies describing strategies to help caregivers cope
with living with cancer and its consequences. The interventions include a range of
educational, psychoeducational, support, and skills-building strategies targeted at the
patient and family caregiver as a dyad and to family caregivers alone. The value of
providing information to cancer caregivers has been reported consistently in the re-
search literature (Wilson and Morse 1991; Zahlis and Shands 1991). Reported in the
literature with equally consistent frequency however, is the difficulty that caregivers
have in obtaining information from healthcare professionals, particularly physicians
and nurses (Dyck and Wright 1988; Wilson and Moore 1991; Zahlis and Shands
1991). Despite the fact that it is often difficult to obtain, caregivers report that infor-
mation is a critical element in helping them to cope with the patient’s illness (Gotay
1984; Northouse 1989).
In addition to providing information about the physical aspects of the illness,
caregivers need to learn more about the emotional aspects of illness and recovery
(Northouse and Peters-Golden 1993). According to Oberst and Scott (1988), care-
givers need to be informed about what to expect regarding the emotional aspects
of the illness for both themselves and the patient. In this manner, caregivers can be
proactively reassured that their own and the patient’s psychological distress is to be
expected and not a sign of poor coping.
The times when caregivers appear to be in the greatest need of information are
at the time of diagnosis (Northouse 1989), during the hospital period, especially at
the time of surgery (Northouse 1989; Northouse and Swain 1987), at the start of
new treatments (Wilson and Moore 1991) and at the time of recurrence. Despite the
documented importance of providing information to caregivers, only a few inter-
vention programs have been reported that demonstrated how and what information
should be provided. Outcomes associated with educational interventions were not
clearly described nor were consistent variables and measures used to describe rel-
evant outcomes. This makes replication of studies difficult at best. It undermines
the importance of conducting research in an effort to bolster caregiver supports and

makes it difficult to build on past work to meet caregiver needs.
Heinrich and Schag (1985) developed the “Stress and Activity Management”
(SAM) intervention for cancer patients and their spouses and consisted of structured,
small group meetings that met weekly for 2 hours over a 6-week period. Groups were
designed to: educate patients and spouses about cancer and its impact; teach specific
skills that could be used to manage stress and daily problems such as relaxation tech-
niques, physical and recreational activities; and promote problem solving. Among the
92 patients who met eligibility criteria, 51 participated in the study along with 25 of
their spouses. Twenty-six patients and 12 spouses were randomized to the treatment
group and 25 patients and 13 spouses to the control group. The primary outcome vari-
ables included psychological adjustment, depression and anxiety, which improved
for both treatment and control groups, supporting the notion that natural improve-
ment in psychological status will occur over time. The SAM patients and spouses
reported high satisfaction with the intervention, although due to the self-selected
nature of the treatment and control groups, it is likely that the control subjects would
have also been satisfied. Support for the unique and positive impact of the SAM
treatment intervention came from the improvement in scores on the Cancer Infor-
mation Test, indicating that the program increased participant’s knowledge about
cancer and coping. This finding is noteworthy because most patients and spouses
had been living with cancer for about 2 years and demonstrated minimal knowledge
about their illness. SAM spouses in particular were more satisfied with the education
and support they received than the control spouses who received the usual care and
were not routinely included in physician office visits. Despite the small number of
subjects studied and the self-selected nature of the sample, this study is noteworthy
in several respects including: a well-described replicable intervention, randomiza-
tion, and clear delineation of outcome variables. Barg et al. (1998) implemented
a 6-hour psychoeducational Caregiver Cancer Education Program (CCEP) that ad-
dressed symptom management, psychosocial support, and resource identification. A
convenience sample of 150 caregivers attended sessions. The majority of caregivers
were female and cared for patients over 50 years of age. Sixty-one percent of the
caregivers assumed the caregiver role less than 6 months previously. Twenty-two
percent provided less than 5 hours of care per week, while 32% provided 6–20 hours
per week. Thirty-eight percent of the caregivers reported their health suffered due to
caregiving and 20% reported being very stressed. The majority of patients received
assistance, and 70% reported that their families were not working well together.
Forty-six percent reported inadequate financial resources. Thirty-five percent were
emotionally overwhelmed with caregiver roles; 61% reported all of their activities
centered on caregiving, requiring them to adjust their schedules and relinquish other
activities. Psychosocial issues, such as watching the patient becoming more ill and
not knowing what to do, were reported as the most difficult issues they faced. Many
caregivers were ambivalent in the role, however, saw it as an important task. The
methodological limitations include convenience sample, lack of clinical data on
patients and shortness of follow-up intervals.
In a randomized control design, Blanchard et al. (1997a) implemented a cop-
ing with cancer (CWC) intervention for spouses of cancer patients. Thirty spouses
were randomized to the CWC group and 36 to usual services. The intervention was
a problem-solving approach to reduce or manage problems underlying caregiver
distress. An experienced oncology social worker conducted six 1-hour individual
counseling sessions. Measures included a battery of standardized measures. Assess-
ments occurred at baseline, after completing the 6-week intervention, and again at
6 months. Mean caregiver age was 55 years in the control group and 50 years in the
experimental group. The average length of caregiving time was 21 months for the
intervention group and 31 months for the control group. Number of hours of care
provided per week was 2.7 for the experimental and 3.1 for the control group. The
two most common cancer diagnoses were breast, followed by lung. Results revealed
a significant intervention main effect of time on spouse psychosocial well-being and
on coping. Univariate follow-up revealed significantly reduced depression in both
groups as well as reduction in avoidance coping in both the groups. Qualitatively,
spouses and patients reported that the intervention helped to improve their communi-
cation. Methodological limitations of this study include small sample size, time since
inception of caregiving, lack of variation in age of caregivers, and lack of discussion
of patient’s clinical data.
Houts et al. (1996) described a prescriptive problem-solving model for how care
should be managed at home and for the kind of information and training family care-
givers should receive. The Prepared Family Caregiver model, which is summarized
in the acronym COPE (Creativity, Optimism Planning, and Expert information),
teaches caregivers how to develop and implement plans that address both medical
and psychosocial problems and are coordinated with care plans of health profes-
sionals. The model is based on extensive research regarding unmet emotional and
physical needs of caregivers and problem solving training and therapy. According
to the authors, the program empowers family members and patients to cope with
illness and can help to moderate caregiver emotional stress, although outcomes used
in the research design to document the program’s effectiveness remain inadequately
described.
Jepson et al. (1999) examined changes in the psychosocial status of caregivers
(N = 161) of postsurgical patients with cancer. In a longitudinal, randomized trial,
these investigators analyzed how caregiver distress was affected by whether care-
givers had physical problems of their own and whether patients received a home-care
intervention. Half of the patients were randomly assigned to receive a standardized
home-care nursing intervention in which 32% were referred to home care; the other
half received a standardized intervention over a 4-week period consisting of three
home visits and six phone calls from an oncology clinical nurse specialist. The in-
tervention focused on assessing and monitoring problems, helping with symptom
management, teaching self-care, and coordinating resources. Data were collected at
the time of the patients’ discharge and approximately 3 and 6 months later. Overall,
psychosocial status improved from baseline to 3 months and was about the same
at 6 months. Among caregivers with physical problems, the psychosocial status of
those in the treatment group declined compared to those in the control groups in
the 3 months after discharge; an opposite pattern was observed during the following
3 months. Results indicated that caregivers who have physical problems of their own
are at risk for psychological morbidity, which may have a delayed effect. This delay
may reflect the replacement of initial optimism with discouragement as caregivers
face the reality of long-term illness. This research suggests that it may be impor-
tant for clinicians to assess who is responsible for providing care to their patients at
home and whether caregivers have health problems of their own that might interfere
with their abilities to take on this role. In the event, caregivers report health prob-
lems, referrals for supplemental care are essential. These findings warrant additional
investigation.
Bultz et al. (2000) found that partners of breast cancer patients provided support at
a time when their own coping abilities were taxed by the challenge of cancer. Among
118 consecutive patients approached, 36 patients and their partners participated in
a randomized controlled trial of a brief psychoeducational group intervention for
partners only. Patients whose partners received the intervention at 3 months reported
less mood disturbance, greater confidant support, and increased marital satisfaction.
Support, Counseling and Psychotherapy
The sources of support available to cancer patients are many and varied ranging from
one-on-one interaction to a myriad of formal support groups and networks. Sources
of support for family caregivers have lagged far behind those provided for patients
(Northouse and Peters-Golden 1993). Spouses in particular report little support from
health professionals, often due to limited contact with physicians and nurses in
hospital and outpatient settings (Northouse 1988; Northouse and Northouse 1987).
There is a dearth of information regarding the effectiveness of supportive and
counseling interventions with cancer caregivers. This is despite the implications
from studies of educational interventions that many seem to be inadequate.
Goldberg and Wool (1985) conducted a 12-session intervention of social sup-
port counseling over 6 months with spouses and adult children of newly diagnosed
lung cancer patients in treatment, using a randomized control group design. Fifty-
three caregivers were assigned to the counseling intervention or to usual treatment.
Caregivers and patients were assessed at initial treatment, prior to implementing
the intervention, and again at 8 and 16 weeks. The support functions of the inter-
vention were: to help maintain the social support system, to promote the patient’s
sense of autonomy, to be an advocate in the care system, to encourage communi-
cation between patient and family, and to facilitate mutual expressions of feelings.
No changes were found on the measures of psychosocial or physical functioning
for the caregiver. The interventionists were social workers and psychologists. The
investigators attributed the lack of findings to the characteristics of the subjects who
participated. The caregivers were doing well and thus had limited or no distress.
They recommended screening caregivers so interventions can be targeted to those
who need them.
Blanchard et al. (1997a) reported on the effect of a six-session intervention with
spouses of cancer patients. They used a problem solving intervention to help spouses
solve individually identified problems. Results at 6 month follow up showed no

significant impact associated with the intervention, even for those spouses who were
most distressed. Interestingly, patients of spouses who received the intervention
showed significant decline in depression. It could not be determined whether this
was related to altered communication between spouses and patients following the
intervention or relief on the part of patients that spouses were receiving help. Findings
suggested the importance of studying the spouse/patient dyad as opposed to each
person individually.
Pfefferbaum et al. (1977) described a comprehensive program for breast cancer
patients and their families that followed families pre and postoperatively and im-
pacted positively on coping outcomes. In this program, a mental health professional
worked with the surgical team to provide counseling to patients and family members
who were identified ahead of time as being in need of emotional assistance. The
researchers concluded that this notion of identifying caregivers who are at high risk
for problems in specific areas and tailoring interventions to their special needs seems
to be an important direction for future research.
If caregivers are unable to satisfactorily deal with the multiple demands and have
overwhelming feelings and affect associated with them, the potential exists for de-
terioration of the caregivers’ emotional and physical health (Axelsson and Sjoden
1998; Hull 1992). Institutional and home hospice services have been used to help
patients and caregivers deal with the insults to physical and emotional well-being
that are imposed by terminal illness. They have also incorporated caregivers into pa-
tients’care by educating them and supporting their caring efforts. In this sense, recent
studies have shown an increase in hospice supported home care with an emphasis on
supporting the primary caregiver role (Schachter 1992).
As is the case with other caregiver intervention research, efforts to describe and standardize
interventions need to be undertaken so that interventions can be successfully replicated
across studies. In addition, outcomes must be clearly described and measured in several
areas including physical health, emotional health, utilization of costly health care services
and functional productivity. (Schachter 1992, p. 63)
Research Implications
Among the small number of studies in this area, many used small convenience sam-
ples that lacked randomization. Although convenience samples are often used in
caregiver research, their use makes it difficult to generalize results. Small sample
sizes may not reveal hypothesized relationships because statistical power is low.
Future studies should attempt to employ strategies to maximize sample size, such
as multi-site studies, longitudinal randomized clinical trials, and secondary analy-
ses of large data sets. Many studies included in this chapter used a cross-sectional
design. The use of longitudinal designs is preferred and would greatly enhance our
understanding of caregiver emotional responses to interventions over time, including
the potential preventive nature of caregiver interventions over time and the optimal
timing of interventions. Recruitment and retention of diversity of caregivers in lon-

gitudinal studies is an important area needing further attention. Diversity needs to
be ethnic, racial and cultural to examine common and varied needs. Difficulties re-
taining subjects in family research has been outlined (Cooley and Moriarty 1997;
Moriarty 1990). Creative strategies for recruiting and retaining caregivers who are
experiencing the unique emotional stresses associated with caring for a loved one
with cancer are needed.
Attrition was noted as a problem in the longitudinal studies that were described.
The use of statistical techniques to determine whether a remaining sample differs
from the initial sample is important in terms of assessing the internal validity of the
study (Cook and Campbell 1979). Given et al. (1990a) proposed strategies to mini-
mize attrition in research with family caregivers. Data collectors need to be prepared
to deal with high subjective distress. Ongoing communication by the researchers
with the subjects, continuity of subject contact with consistent data collectors and
creation of a positive interpersonal relationship between research team and subjects
are essential to minimize subject attrition.
Many studies revealed selection bias, often to well-adjusted caregivers who were
accepting of support, able to obtain respite care for participation purposes, and
usually were willing to avail themselves to a group style intervention. Efforts to
recruit the most vulnerable caregivers, such as those who are homebound or have
chronic medical conditions themselves, must be developed and described.
Other areas for future research include the impact of ethnic differences and non-
traditional family styles on caregiver needs and intervention response. A family’s
social and ethnic background may influence relationships with and perceptions of
health care professionals, access to care issues and roles in caring for the patient. To
date, little attention has been paid to social and cultural issues in cancer caregiver
research.
Another notable gap in the cancer caregiver research relates to variation in fam-
ily structure. Most research is done from the perspective of the traditional marriage
dyad or a two parent family structure (Kristjanson and Ashcroft 1994). There are
many other types of families that may have needs different from those of traditional
couples and may warrant the development and testing of innovative interventions
strategies. For example, remarried and blended families, gay and lesbian couples
with and without children, and unmarried partners may have unique needs and prop-
erties that require definition. Errors in the development of interventions may occur
if research findings generated from other family forms are applied inappropriately.
Further research to address these gaps is needed.
A lack of well-delimited outcome variables was revealed as a major gap in the
literature. Outcomes, or the results of care, are frequently viewed as indicators of the
quality of service provided. Globally, outcomes can be categorized into those related
to the quality and need for services, the cost of care and access to care issues. In
this age of soaring health care costs and diminishing nonessential services, the docu-
mentation of outcomes associated with interventions, especially those geared toward
vulnerable caregivers is paramount. In addition to outcomes, common measures are
needed to assess needs, burdens, and caregiver health.
Overall, nurse and nonnurse researchers have developed interventions targeted at

caregivers of cancer patients. In general, nurses tend to develop interventions that are
geared toward increasing the proficiency of caregivers to address the physical and
psychosocial needs of the patient. Nonnurse researchers tend to develop a greater
abundance of individual and group psychological interventions directed specifically
at the caregiver. Since research examining the efficacy of caregiver interventions
is clearly in its infancy, the field would be greatly enhanced with an emphasis on
interdisciplinary efforts that capitalize on each discipline’s theoretical orientation
and clinical strengths. Interventions in those experiencing high levels of distress
also need to be tested at different points in the cancer trajectory to determine, for
example, if interventions are most effective at certain points in the illness, whether
interventions can be preventive across illness stages or whether different types of
caregiver interventions need to be implemented at different stages of the cancer.
Multimodal interventions that combine more than one type, such as problem solving
and support or education and support are needed.
Policy Implications
Current trends in health care focus on cutting costs in acute care settings resulting
in a shift of care from the hospital to the home. Despite what may seem to some to
be societal cost savings and enhanced efficiency of the health care system, the locus
of the financial, physical and emotional burden of cancer care is often shifted to
family caregivers who may incur emotional, economic, and physical consequences.
Intervention initiatives underscore the need for caregiver advocacy in these changing
times.
Advocacy groups are needed to champion the needs of family caregivers, espe-
cially for high risk caregivers who have no voice. The passage of the Family Leave
Bill in 1993 is noteworthy, however, it is extremely limited. Efforts are needed to
secure both federal and state financial support for family caregivers. Mental health
services are needed for individual and family counseling, including adequate cov-
erage and reimbursement for both in-patient and out-patient services. Community
health centers need to organize local support groups for adults as well as school age
children. Respite programs that provide relief need to be expanded along with com-
prehensive mental health services. There need to be state tax credits to allow families
full advantage of essential services such as respite. These measures are critical so that
programs to assist caregivers can be adopted through policy initiatives as changes
in the health care system continue to evolve. Families are an important resource in
person power to provide needed care to patients to prevent them from using more
costly services and long-term care resources before they are needed.
Clinical Implications
Despite the fact that a cancer diagnosis causes major changes in family roles and
functioning in addition to increased responsibility for caregivers, data supporting
the effectiveness of caregiver interventions are limited at best. A seminal review by
Blanchard et al. (1997b) reported that between 20 and 30% of partners suffered from
psychological impairment and mood disturbance as a result of a spouse’s cancer. The
review goes on to describe factors that may predict high levels of caregiver emotional
distress. The authors highlighted the need to explore the mediating role of suggested
risk factors on specific outcome variables such as family functioning and emotional
distress and suggested that interventions be targeted to high-risk individuals. Factors
suggested to effect distress levels in caregivers are summarized below:
• Disease stage. Advanced disease is often accompanied by higher distress.
• Patient’s emotional adjustment. This is correlated with caregiver adjustment.
• Gender. Female family members are more distressed than males.
• Age. This is inversely related to emotional distress.
• Socioeconomic status and other life stressors. Lower SES and more life stressors
correlated with higher distress.
• Personality traits. Caregiver optimism may predict caregiver reactions.
• Coping and social support. Previous history of caregiver depression predicts more
distress. Perceived coping efficacy may mediate effect between caregiver strain
and depression. Social support may mediate relationship between functioning and
caregiver depression.
• Caregiver health. Caregivers’ previous health predicts their adjustment.
• Marital adjustment. Good communication correlated with the ability to meet
demands.
• Family functioning. Lower distress found in spouses and children if families are
not rigid or chaotic.
While additional work is needed with regard to the identification of factors that
predict those at highest risk for distress, clinicians need to become knowledgeable
about the factors we know influence caregiving. Once caregivers who are at risk for
emotional distress are identified, they can be referred to services to address their
needs.
Educational Implications
Given the levels of emotional distress documented in the literature cited previously,
there is a tremendous need to better prepare health professionals to be attentive to
the emotional needs of the caregiver. Physicians and other professionals have to
be taught during their training programs about the value of the family care role.
With this training, they are more likely to apply it to their ongoing practice settings.
Professionals need to understand how to assess the dynamics within a family to
understand when challenges and conflicts might occur, and to recognize caregivers
who are at risk for high levels of emotional distress. Primary care clinicians for their
health care needs will see most of these caregivers; it is these professionals that must
be targeted for ongoing educational training, including continuing education credits.
Professionals need to be taught how to assess caregivers’ capacity to provide care in
light of the patients’ actual and anticipated needs. Caregiving training programs are
available, however, effective home care will be enhanced when professionals assess
the needs of their patients along with the capacity of the family caregivers to provide
the care. Professionals need to have the knowledge and skills to facilitate caregiver
role acquisition and determine when emotional distress extends beyond expected
levels and warrants treatment. Family caregivers need to be included in the patient’s
plan of care and kept informed about what to expect. Once professionals grasp that
family caregivers can play a critical role in enhancing patient clinical outcomes, they
may be willing to assess the caregiver’s health and emotional capacity to provide
care as a partner in the process. By forming partnerships with family caregivers,
professionals can achieve the clinical outcomes they desire for the patient.
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Chapter 4
The Impact of Health Disparities on Cancer
Caregivers
Carol D. Goodheart
The daily routine of giving care to a person ill with cancer is difficult under the best of
circumstances. In the dynamic ebb and flow of need and care, crisis and chronicity,
the on-going strain exacts a toll, even for people who take pride and satisfaction in
being able to provide care. Difficulties are magnified when the climate for caregiving
is worsened by such factors as poverty, discrimination, substandard access to services
and treatment, language or cultural barriers.
Health disparities are defined by the working group of the National Institutes of
Health (NIH) as “differences in the incidence, prevalence, mortality, and burden of
cancer and related adverse health conditions that exist among specific populations
in the United States. These population groups may be characterized by gender, age,
ethnicity, education, income, social class, disability, geographic location, sexual
orientation” (National Cancer Institute [NCI] 2005, p. 2). This chapter addresses the
current status and future directions for cancer care research, practice and services,
education and training, and public policy, as they pertain to increasing resilience and
reducing the caregiving hardships created by health disparities.
Background
The changing demographics and distribution of income in the United States paint a
revealing picture of the challenges for the future of cancer care and the concomitant
effects on caregivers. Demographics are shifting rapidly in the twenty-first century.
Today, more than 7 out of 10 people in the population are White Americans. By
2050, close to half of all Americans will be persons of color (U.S. Census Bureau
2004). The pattern of income distribution for the country is becoming increasingly
skewed as the gap widens between the wealthiest 25% and the poorest 25% of the
population. The Federal Reserve reports a 70% increase between 1998 and 2001
in the wealth difference between the richest 10% and the poorest 20% of families;
C. D. Goodheart ()
114 Commons Way, Princeton, NJ 08540, USA

64 C. D. Goodheart
the gap between ethnic minorities and Whites escalated by 21% in the same brief
period of time (Hagenbaugh 2003). This type of disparity results in a worsening of
overall health status because less of the general population has access to healthcare
(Wilkinson 1992).
Consider the following examples of cancer occurrence, mortality, and health
insurance, in which each number in an aggregate statistic has a human face and one
or more significantly affected caregivers behind it:
• African Americans have the highest cancer incidence and death rates of any group
in the United States; their death rate is 30% greater than Whites (NCI 2005). These
figures represent the largest total health disparity among all groups and occur for
multiple reasons, including poverty and a historic pattern of discrimination and
differences in medical care.
• Hispanics/Latinos represent about 12% of the population, however, they make
up 25% of the nation’s uninsured. By 2050, they will represent almost a quarter
of the country’s population (U.S. Census Bureau 2004). The strain on the health
care system and on families will increase proportionately if the nation does not
have adequate and culturally appropriate care and caregiving support services.
• Asian Americans have an incidence rate for liver cancer that is more than three
times the rate for Whites; their stomach cancer rate is more than twice as high
(NCI 2005). More research is needed to understand fully the reasons for these
differences.
• Poor White Appalachian Kentucky women have a cervical cancer rate that is
almost twice as high as the incidence rate reported for White American women
overall (Institute of Medicine 1999). Concerted education and screening efforts
are needed to respond to this trend.
These examples imply differences not only for people with cancer, but also for those
who take care of them and the communities in which they live. However, it is not
helpful to make blind assumptions about the health status of a particular ethnic
or cultural group. Former Surgeon General David Satcher illustrates this reminder
well: “Asian-Americans are often viewed as a ‘model’ ethnic minority because of
their low unemployment and disease rates. Asian-American/Pacific Islander women
age 65 and older, however, have the highest death rate from suicide of all women
in their age group, four times higher than the rate among elderly black women and
twice the rate of white women” (Satcher 2001, pp. 131–132).
Broad categorizations may mask considerable individual differences. People are
heterogeneous both within and between groups. It is necessary to avoid cultural
stereotyping and to consider such factors as acculturation status and ethnic identity,
including the reality that many people have multiple ethnic identities. There exists
a useful distinction between generalizations and stereotypes (Galanti 1997): A gen-
eralization is a starting point, indicating common trends, however, further inquiry
is needed to discover if the statement is appropriate to a particular individual. A
stereotype is an ending point, one in which no further attempts are made to discover
if a person fits the statement.
Caregiving situations and resources differ for: a poor Mexican agricultural worker
family that travels hundreds, or even thousands of miles within the United States
4 The Impact of Health Disparities on Cancer Caregivers 65
each year (alternatively, the family may be separated during the harvest seasons and
reunited in Mexico for only a small portion of the year, depending on the feasi-
bility of border crossings), a working-class Cuban American gay man in Miami, a
wealthy Argentinean American heterosexual couple in Chicago, and a Puerto Rican
American single middle-class working mother with two children in New York City.
Although all are classified as Hispanic/Latino and may have commonalities such as
language and religion, they have diverse personal circumstances, identities, immi-
gration/citizenship status, levels of acculturation, and cultural backgrounds. Not all
of them will face the same degree of disparity in access to health care and support
services.
Race is a social construct associated with power, status, and access to opportu-
nity. Institutional racism and overt discrimination in the United States have been
ameliorated somewhat by better public policies and social norms for social equality,
however, disparities remain widespread in health care systems.
Current Status
Guided by the caution not to over-generalize and fall into cultural stereotyping,
it is useful to understand the underlying contributing factors that produce cancer
disparities and affect families directly. The reduction of health disparities in the
United States will depend upon applying the current knowledge to health policies
for the future. There are several issues to consider as one evaluates the status of
cancer caregiving.
First, cancer caregiving is becoming more difficult in general, because medical
treatments are aggressive in the attempt to save lives. There are many side effects
produced by surgery, chemotherapy, and radiation that create physical and emotional
sequelae. Many of the treatments are done on an outpatient basis, and hospital stays
are short. This leads to hardship for care recipients and family caregivers, who must
cope with debilitating symptoms and frightening procedures at home. Also, even
when the treatments end and the result is remission or cure, some survivors need
on-going care.
Second, although the focus of this chapter is on family caregivers, it is important to
note that there are actually several classes of caregivers relevant to a full consideration
of health disparities: professionals (e.g., physicians, nurses, psychologists, social
workers), paid nonprofessionals (e.g., aides, community workers), and informal
caregivers (e.g., family members are most typical, however, sometimes the daily
primary caretaker is a friend or neighbor). Each group faces particular demands.
For example, the preponderance of hospital and nursing home aides are women, are
underpaid, under-trained, and/or under-supported for the complexities of the job,
and are often from ethnic minority cultures themselves, which may not match the
cultures of the individuals with cancer under their care.
Third, the literature on cancer caregivers in the context of health disparities is
quite limited. It is necessary to draw upon several related streams of research and
to extrapolate from them in order to gain a clearer understanding for cancer care.
66 C. D. Goodheart
The resources used in this chapter include information on cancer, disparities, cross-
cultural issues, and caregiving for other diseases and conditions such as Alzheimer’s
disease and disabilities.
Research
Research reports on ethnic minority family caregivers reveal both positive and nega-
tive consequences associated with the role. Sociocultural status may increase the risk
of being in harm’s way for members of some groups, however, cultural heritage may
provide well-developed protective and coping resources to counterbalance some of
the risk.
Work
Many caregivers reduce the number of hours they work each week to provide care. A
study of caregivers for frail elders finds the burden of reduced employment is more
likely to be experienced by families of African Americans and Hispanic/Latinos than
the families of Whites (Covinsky et al. 2001). This finding may be a reflection of
socioeconomic status, cultural values, or a combination of the two.
Health
African American caregivers are at greater risk to become ill themselves, and they
are less likely than Whites to have formal support as their care recipients’ conditions
deteriorate (Williams and Dilworth-Anderson 2002). Although caregiving places
similar restrictions on both Black and White families, the variable associated with
physical health is race, not caregiving (Haley et al. 1995).
Resilience
African American caregivers show more resilience than Whites on measures of

depression and life satisfaction. However, they are still vulnerable to increases in
physical symptoms over time (Haley et al. 1995; Roth et al. 2001).
Learning
When given a culturally sensitive psychoeducational program on caregiving, His-

panic/Latina caregivers respond very positively. They increase their knowledge;
they increase their awareness of community-based services, and they increase their
willingness to attend support groups (Morano and Bravo 2002).
Religion
Hispanic/Latinas and African Americans turn increasingly to religion after they be-
come caregivers. White caregivers do not show this change (Navaie-Waliser et al.
2001).
Resourcefulness
African American caregivers have higher resourcefulness scores than Whites, and
a more benign appraisal of disruptive behavior in their sick elderly care recipients.
Despite this, coping efforts for both groups are similar (Gonzalez 1997).
Hospice Use
Many ethnic minority groups underutilize hospice services for end of life care. A
study of a large metropolitan facility in Virginia found the hospice provided end of life
care service at the following rates: 30% of Caucasians, 20% of Asians, 19% of His-
panic/Latinos, and 18% of African Americans (O’Mara and Arenella 2001). Barriers
to hospice access were identified in a national study (Gordon 1996). The admis-
sion criteria impeded access for African Americans, especially the primary caregiver
requirement, whereas problems with language, reimbursement, and severity of ill-
ness impeded access for Hispanic/Latinos, who were the most underserved group.
Apart from the existence of barriers, there may be cultural preferences for end of life
care among some groups, which could account for a portion of the underutilization
patterns.
Disparities in Cancer Caregiving
In looking at a different subset of the research literature, some of the factors that
make cancer caretaking harder may be identified.
Unequal Cancer Treatment Perhaps the most striking factor is unequal cancer treat-
ment. There are significant racial and ethnic differences for the implementation of
cancer diagnostic tests, treatments, and analgesics (Institute of Medicine 1999, 2003).
68 C. D. Goodheart
Of great significance for caregivers, how does one care for someone in daily can-
cer pain? Pain management is inadequate for nearly everyone. However, it is more
difficult for women, those in rural areas, the elderly, and people of color to man-
age. The treatment of pain for African Americans is inadequate compared to that for
Whites. African Americans have a 63% greater likelihood of having untreated cancer
pain than Whites. Patients treated in centers primarily serving African American or
Hispanic/Latino populations have a 77% probability of being undermedicated for
pain, and physicians underestimate the severity of cancer pain in African Americans.
African American women with breast cancer are less likely than Whites to receive
radiation and African American men with prostate cancer are less likely than Whites
to receive the newer surgical treatments. Further, African American men are twice as
likely as Whites not to receive any treatment at all for prostate cancer. These findings
provide disturbing evidence of unequal burden (Institute of Medicine 1999, 2003).
Gender Disparity Women comprise three out of four caregivers for dying cancer pa-
tients, however, when they are terminally ill are less likely than men to receive family
care and must rely on paid assistance (Emanuel et al. 1999). However, paid home
health care is being reduced across the country in the national effort to lower health
care costs. Some studies show a more equitable distribution of caregiving between
the sexes, but overall, women spend 50% more time than men do as caregivers (U.S.
Department of Health and Human Services 1998a). Women are overburdened both
as caregivers and as those in need of care. The implications of gender disparity in
cancer care are compounded when one takes into account caregiver ethnicity research
findings on the percentage of individuals caring for parents: 19% of Whites, 28% of
African Americans, 34% of Hispanic/Latino Americans, and 42% of Asian Ameri-
cans (AARP 2001). The intersection of gender and ethnicity research highlights the
disproportionate role burden on ethnic minority women caregivers.
Stress, Depression and Anxiety The risks for stress, depression, and anxiety increase
with the problems accompanying cancer. Often, ethnic minority and socioeconomi-
cally disadvantaged people are at additional risk for depression and anxiety. Racism
and discrimination are stressful events adversely affecting both physical and mental
health; in addition, clinical environments that are incompatible with the cultures of
the people served are a deterrent to obtaining appropriate care (U.S. Department of
Health and Human Services 2001). Schultz et al. (2001) used a stress process frame-
work to explore the implications of race-based housing segregation and economic
divestment on the lives and health (including depression) of women caring for chil-
dren in urban environments. The women reported the following life stressors, which
were significantly associated with symptoms of depression: financial and safety wor-
ries, contact with the police, and unfair treatment concerns. It seems reasonable to
hypothesize that if one adds the stress of caring for a child, adult partner, or aging
parent with cancer, this can only increase the risk for anxiety and depression.
Thwarted Prevention Efforts Tobacco products are advertised, displayed, and
promoted disproportionately to ethnic minority communities, most noticeably in His-
panic/Latino and Asian neighborhoods. Lung cancer is the leading cause of cancer
deaths for Hispanic/Latinos (U.S. Department of Health and Human Services 1998b).
Other Centers for Disease Control and Prevention data show an increase in smoking
prevalence among Hispanic/Latino high school students from 1991 (25.3%) to 1997
(34%), and a plateau at that high prevalence rate since then (Kann et al. 2000). The
rate for lung cancer occurrence among Southeast Asians in the United States is 18%
higher than the rate for White Americans (Coultas et al. 1994). An evaluation of
Proposition 99-funded efforts to prevent and control tobacco use in California (Elder
et al. 1993) found the highest number of tobacco displays in Asian neighborhoods
(6.4 per store), compared to Hispanic/Latino (4.6 per store) and African American
stores (3.7). The lowest number of displays was found in White neighborhoods. Eth-
nic minority communities are not benefiting to the same extent as White communities
in the national public health campaign to eradicate smoking and greatly reduce the
incidence of lung cancer. Although tobacco promotion is reviewed here, it is impor-
tant to note that alcohol consumption and the associated health risks show a similar
pattern of thwarted prevention efforts.
Unmet Psychosocial Needs Caregivers have more concerns about managing daily
life, emotions, and social identity than do the cancer sufferers themselves (Soothill
et al. 2001). This reflects the comparative neglect of caregivers. Perhaps not surpris-
ingly, 43% of caregivers report significant unmet needs, which makes functioning in
the role of caregiver more difficult (Soothill et al. 2001).
Practice and Services
Cancer health disparities and hardships in caregiving are strongly linked to the barri-
ers to care. The process of understanding and removing these barriers will go a long
way toward increasing the comfort of family caregivers and improving access and
utility of services.
Financial Resources Poverty, small incomes combined with long work hours, and
lack of health insurance constitute a daunting barrier to cancer care and to the needed
services for caregivers. Too often, health care quality and access in the United States
are governed by the ability to pay for consultation, treatment, education about the
disease, and support services. Disparities are associated with socioeconomic differ-
ences and “tend to diminish significantly, and in a few cases, disappear altogether
when socioeconomic factors are controlled” (Institute of Medicine 2003, p. 5).
Language The United States is made up of people who speak many languages, each
of which expresses a distinctive culture. Almost 18% of US residents speak a language
other than English at home, including 10.7% Spanish, 3.8% Indo-European, and
2.7% Asian languages (U.S. Census Bureau 2003). Currently, there are insufficient
translators and written materials for many ethnic minority groups, which would aid
in caregiving. Translation is often unavailable in some settings. When available, it
may be carried out by children, teens, adult relatives, as well as by maintenance
workers in some institutions. This could create an awkward or taboo interpersonal
situation, one in which the translator’s relationship, development, or language skill
70 C. D. Goodheart
is not appropriate to the task. The best translators are “cultural brokers” (Fadiman
1997), who are equals, rather than inferiors, to the health care professional. The
best-written materials are conceptual translations, not literal ones.
Some effort has been made to address language needs. The NCI offers material
in Spanish via its website (www.cancer.gov) and will mail Cancer Fact Sheets in
Spanish. Families can also call 1-800-4CANCER, the Cancer Information Service
of NCI; translators are available upon request. If one is not immediately available,
arrangements can be made for a call by appointment. Information specialists at the
American Cancer Society (ACS) provide most of their basic documents in Spanish
and answer cancer questions from callers speaking any language (ACS 2003). ACS
also has some materials in other languages, e.g., the materials for the Asian Tell A
Friend screening program are written in Chinese (Mandarin), Korean, Vietnamese,
and two Filipino languages—Ilokano and Tagalog (www.cancer.org). Increasingly,
language and culture-specific resources are available on cancer facts, care, and op-
tions. However, if translators are not available to discuss care in practice settings too,
the results are likely to be poor communication, disparities in service, and errors.
Cultural Unfamiliarity and Differences The culture of biomedicine is a strange and
exotic culture for members of many ethnic minority cultures. Biomedical and ethnic
minority cultures may hold very different views and beliefs about health and sickness,
dietary needs, dying, polite communication, authority, family/gender/caregiver roles,
folk medicine practices, social customs, and the relationship among mind, body, and
spirit. Because of these potential differences, misunderstanding and discouragement
on both sides of the cultural divide are quite common.
Anne Fadiman’s award winning book, The Spirit Catches You and You Fall Down
(1997), gives a rich illustration of the clash between conscientious and humane
medical professionals and the loving caregiving refugee parents and family of a
Hmong child. Geri-Ann Galanti’s text, Caring for Patients from Different Cultures
(1997), is an example-filled resource that discusses many cultural group norms and
practices. Familiarity with resources such as these books is recommended for health
care professionals who want to become more culturally competent in their work with
patients and families.
Time Pressure During Medical Consultations Typically, visits with physicians are
brief for everyone, and this brevity creates frustration for physicians, patients, and
family members. Many people wish they had more time to ask questions and to
clarify or expand upon the discussion. Time pressure increases if there are additional
demands in the room, such as a need for translation, a need to ascertain if one’s
message is being understood, or a need to negotiate differences in approaching a
problem and arrive at a mutually agreeable compromise. When the pressure flusters
a caregiver, she or he is less likely to hear and give important information related to
cancer options and care. The same may be said for patients, physicians, nurses, and
any other allied health professionals present during consultations.
Limited Access to Support Services When caregivers do not have such basics as
transportation, respite from caregiving and work responsibilities, or language facil-
ity, they cannot avail themselves of informational, psychoeducational, advocacy, or
support services. A good number of cancer treatment centers now have grants and
programs to facilitate participation and support for caregivers, although more are
needed.
Health Professionals’Attitudes and Knowledge Even among well-intentioned health
care professionals, little time is spent on learning cross-cultural medicine, nursing,
psychology, or social work. Increasing numbers of programs are being offered to
health care professionals on diversity issues and guidelines for best practices, al-
though there remains a long road ahead until widespread cultural competence is
reached.
A survey of physicians in Los Angeles found that although 71% believe language
and culture are important for care delivery, more than half of them had no cultural
competency training (Cho and Solis 2001). A national survey of physicians, con-
ducted by the Kaiser Family Foundation, found a majority of physicians aware of
racial disparities in health treatment, however, not believing it to be a widespread
problem. Conversely, 77% of African American physicians disagreed, believing race
and ethnicity do have an impact on how people are treated (Kaiser Family Foundation
2002, March).
Despite these statistics, cultural competency training is on the rise. Many health
care professionals grasp the importance of language and cultural differences in pro-
viding cancer care and experience the impact of this in their practices. Cross-cultural
education has evolved from cultural sensitivity models to cultural competence mod-
els, which are skill based and designed to be less subjective. The growing awareness
of the fundamental inequities related to health disparities has provided an impetus
for the expansion of this educational focus. In line with these advances, accreditation
standards and guidelines have formalized the curriculum requirements for multicul-
tural education in training programs for physicians, nurses, and psychologists. A lag
in multicultural education and training remains for the time being. However, it may
be expected to decrease over time with advances in training opportunities.
Public Policy
In recent years, there has been a growing recognition of health disparities and be-
ginning steps are underway to alter the circumstances. Little is directed yet toward
caregivers, however, they may benefit indirectly from changes in policy that have
an impact on their care recipients. In 2000, the NCI established the Center to Re-
duce Cancer Health Disparities. Under the auspices of the center, a network of 18
institutions creates and implements cancer control, prevention, research, and train-
ing programs in ethnic minority and underserved communities. Another initiative
72 C. D. Goodheart
located at NCI is the Comprehensive Minority Biomedical Branch, whose mission

is to increase the participation of ethnic minority scientists and institutions in can-
cer research, benefiting ethnic minority communities over time. Also in 2000, the
Minority Health and Health Disparities Act was passed and signed into law. It au-
thorized funding for the National Center on Minority Health and Health Disparities
at the NIH ; authorized the Agency for Healthcare Research and Quality to conduct
and support activities, research to measure health disparities, and identify causes
and remedies; and authorized the Health Resources and Services Administration to
support research and demonstration projects to train health professionals on reducing
health care disparities.
Combining both Federal and State resources, the National Breast and Cervical
Cancer Early Detection Program is a model screening program for underserved poor
and ethnic minority women in all 50 states. This is a state Department of Health
administered program, with matching funds and support provided through the Cen-
ters for Disease Control and Prevention. In addition, combining local community
and agency collaboration, the ACS has established a partnership, the Minority Out-
reach & Education Coalition, to provide cancer education programs to underserved
residents.
The progress has been exemplary, however, the public policy trend is not all
positive. There are concerns about the stability of funding for cancer screening,
registry, prevention, and education programs, based on burgeoning federal and state
budget deficits and rising health care costs.
Future Directions
The primary goal for future research, practice, education, and policy is the eradication
of cancer health disparities. Equal care is the path toward equal outcome. To the extent
that cancer health disparities can be reduced, the burden on caregivers will be reduced
proportionately.
Research
There is a need for more research that is specifically targeted to investigate cancer
family caregivers. A great deal is more known about the caregivers of people with
other conditions, such as Alzheimer’s disease. Much of the recent comparison work
on caregiving has been done with African American and Hispanic/Latino groups. As
this body of literature grows, it will be useful to study caregivers from other cultural
groups as well. Particularly within biopsychosocial and family systems theoretical
frameworks, there is ample room to expand the knowledge base and test interventions
for underserved and understudied cancer caregivers. The area of cancer caregiver
research remains open for creative investigation by researchers in all salient health
fields.
Practice and Services
In order to improve cancer health care practices and services, it will be necessary to
improve communication and outreach efforts to family caregivers. Based on current
experiences, future efforts are likely to be most successful if they are tailored to the
specific needs of ethnic minority groups and accommodate differences in language
fluency, dietary practices, gender sensitivity, cultural and religious beliefs, and the
special concerns of a growing population of the aged. Within this context:
• More psychoeducational services for caretakers are needed to teach disease in-
formation, coping skills, self-care and patient-care, how to access services, and
how to make the use of group support systems (both formal and informal).
• More practical services are needed to insure that caregivers have reliable modes
of transportation, communication, respite, and medical backup available to them.
• More bilingual-bicultural staff is needed in cancer care centers to lessen the
barriers created by language differences.
• More community health workers, who are recruited, trained, and retained locally,
are needed. Community health workers are the cultural brokers who translate
language and culture, identify needs, screen for problems, and refer and mediate
between the family and the health care system. They are often the bridge between
health care systems and ethnic minority communities.
Implementation of these needed services will require additional resources from
insurers, hospitals, agencies, and the government.
Innovative programs for caregivers may be adapted for differing populations. For
example, the Stanford Assistance Program (Stanford University School of Medicine)
offers an outstanding multicultural interventions program for dementia caregivers.
The model for ethnicity and caregiving takes into account explanatory and cultural
beliefs about disease and caregiving, attitudes toward caregiving, assessment is-
sues, implications for caregivers, and implications for service utilization and the
development of effective interventions. The program might be adapted to cancer
caregivers by modifications such as removing the material focused on disruptive
behavior in dementia and adding appropriate material on pain, side effects, and
symptom relief in cancer (D. Gallagher-Thompson 2003, personal communication;
Gallagher-Thompson et al. 2003). At a national meeting of the Cancer Patient Ed-
ucation Network, Ana Marchena, a Health Education Specialist at Memorial Sloan
Kettering Cancer Center, presented a program on establishing a program for care-
givers of cancer patients. This cancer caregiver program could be modified for diverse
cultural groups.
In the future, the Internet and combinations of Internet, telecommunications, and
face-to-face contact may be used increasingly as a source of information and support.
Of course, many caregivers affected by health disparities due to language barriers or
poverty do not have ready access to the new “infomatics.” Public libraries provide
free public access to computers with Internet availability, as do some hospitals in
conjunction with the American Cancer Society.
74 C. D. Goodheart
The Computer Retrieval of Information on Scientific Projects (CRISP;

crisp.cit.nih.gov), which is a database of federally-funded biomedical research, sum-
marizes projects in progress that may develop into promising intervention programs
for caregiving members of ethnic minority populations. Two such examples are Web-
Based Support for Informal Caregivers in Cancer (Gustafson 2006) and Tele-Care
for Caregivers of the Terminally Ill (Rubert 2000). It seems likely that technology-
based options will supplement, but not supplant, the resources needed for human
contact, support, and respite.
The education and training system serves as the mechanism to translate the evolv-
ing knowledge base into better practices that serve the public well-being. The goal
is full integration of multicultural competence training, including an understand-
ing of the psychological and physical impact of bias and stereotyping, into all
core professional education programs for health professionals: physicians, nurses,
psychologists, social workers, occupational therapists, physical therapists, and di-
eticians. Professionals must understand that bias exists and has an impact on health
care delivery, however, learning new multicultural skills can mitigate it. As health
care professionals and educators learn and grow, the health care educational system
will both teach and reflect these changes.
The full implementation of training will take time. For now, in addition to core
training programs for those entering the professions, multicultural competence train-
ing may be disseminated through continuing education courses and institutional
in-service programs. It has been shown that training for professionals in cultural com-
petence has a direct influence on the quality of service patients and family caregivers
receive.
Public Policy
The major public research and intervention policy initiatives begun over the past
decade, and discussed earlier in the chapter, will need continued growth and sus-
tainable funding if they are to come to fruition. New initiatives are needed to offer
basic protections for caregivers. For example, Ezekiel Emanuel, MD, a director of
the Commmonwealth-Cummings Project on the End of Life, suggests that the vi-
tal services provided by family caregivers be recognized by the introduction of tax
credits (ACS 2000).
As health care reform cycles to the forefront of economic and political debates
again, it will be important to consider how best to maintain the policy gains of the past
15 years related to cancer caregiving and health disparities. Further legislative and
legal means may be needed to block insurance discrimination, to allow for continuity
of care in government-backed health plans such as Medicare and Medicaid, and to

maintain adequate resources to enforce civil rights laws (Institute of Medicine 1999).
Summary
The impact of health disparities on cancer caregivers is discussed in terms of the

current status of cancer care research, practice, education, and policy. Future direc-
tions for these four areas are explored with an eye toward improving both health care
conditions and the quality of life for caregivers from diverse cultural groups.
There is less direct research and intervention literature on caregivers for individ-
uals with cancer is available than on other populations, perhaps because the cancer
population is less homogeneous and the disease course more widely variable. Cancer
occurs across the life span—in children and adolescents, adults in the prime of life,
and the elderly. Cancer may run a fast course from diagnosis to death, or it may
result in long-term remission or cure. Cancer treatments may extend life consider-
ably, but leave the person with significant disabilities. Cancer family caregivers may
be children, adolescents, adults, or elderly themselves. Although this heterogeneity
makes research and intervention for cancer caregivers more difficult, the need is im-
perative. The hallmark of a healthy society is fair and equitable treatment for all. If
the United States is to meet the challenge of eliminating health disparities, we must
insure that services for cancer care and cancer caregiving are responsive to the needs
of all members of our diverse society.
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Chapter 5
Education, Training, and Support Programs
for Caregivers of Individuals with Cancer
Myra Glajchen
More than 52 million adults currently provide care to relatives in the United States
(Family Caregiver Alliance 2011; Schulz and Beach 1999). These family caregivers
become active members of the healthcare team with little or no preparation in dis-
ease management, sometimes under sudden and extreme circumstances. As this has
occurred, the demanding role of caring for patients has fallen to untrained, inexperi-
enced family members. Involvement of family caregivers is essential for the optimal
treatment of the cancer-pain patient, especially in assuring treatment compliance,
continuity of care, and social support (Warner 1992). In response, the medical com-
munity has sought to develop education, support, and training programs to guide
family members caring for patients with cancer.
Developing effective interventions that fulfill caregivers’ physical and emotional
needs is a demanding process. In order to design effective caregiver interventions,
clinicians, researchers, and educators must have a clear understanding of the role
caregivers assume and the needs they have as a result of these demanding roles.
Research conducted over the past 20 years has given us a good understanding of
caregivers’ roles and their needs. As a result, several types of interventions have
been developed with the goal of addressing these needs. In general, four types of
interventions can be identified: (1) educational or informational; (2) counseling or
psychotherapy; (3) hospice or palliative home care; and (4) problem-solving or skill-
building. The intended outcomes of these programs for caregivers include increasing
knowledge and confidence, reducing anxiety and depression, providing medical and
psychosocial services, and improving skills. However, whether current interventions
result in the intended outcomes is unclear.
The purpose of this chapter is to provide the reader with an understanding of the
current status of education, training, and support programs for caregivers of patients
with cancer. The chapter begins with a review of caregivers’ roles, needs, and the
impact of caregiving. Next, a description is provided of each type of intervention and
its intended outcome, followed by a review of literature regarding whether existing
M. Glajchen ()
Institute for Education and Research in Pain and Palliative Care, Beth Israel Medical Center,
First Avenue at 16th Street, NY 10003, New York, USA

80 M. Glajchen
interventions have demonstrated effectiveness and efficacy in meeting caregivers’

needs. Programs of education, training, and support were included for review if
they were designed for the caregivers of cancer patients and had been published in
the peer-reviewed literature. Pasacreta and McCorkle (2000) evaluated the literature
on the impact of interventions on caregiver outcomes. This chapter summarizes and
augmentes their findings with literature and new developments published subsequent
to their review.
Both program efficacy and effectiveness are described to illuminate the associ-
ation between program and outcome. Efficacy refers to whether controlled trials
show a treatment effect, while effectiveness refers to whether the treatment transfers
well to real-world populations. Randomized controlled trials measure efficacy and
provide enhanced internal validity; however, they may have limited generalizability
to real-world settings. On the other hand, effectiveness approaches offer enhanced
external validity, and are generalizable. However, they are typically less-controlled
than efficacy studies, thereby limiting the assumptions that can be made about causal-
ity. Both efficacy and effectiveness studies are included in this review. The chapter
concludes with recommendations for future research and challenges confronting the
field of caregiving as a whole. The multifaceted role of persons caring for patients
with cancer, especially advanced cancer, is a demanding role that poses significant
challenges. As care of the cancer patient has shifted from the hospital to the home,
the role of family caregiver has been transformed into a complex, multifaceted role
that a caregiver may be ill-prepared to assume. To fully understand the role of the
caregiver caring for someone with cancer, it is useful to first describe the cancer
continuum. This term has been used since the mid-1970s to describe the various
transition points that comprise the disease trajectory in cancer. These milestones
include cancer prevention, detection, diagnosis, treatment, survivorship, end-of-life,
and death (National Cancer Institute 2005). The role of the caregiver in cancer will
shift along with the needs of the person with cancer. In addition, for the caregiver
whose loved one dies, bereavement must be added as the last transition point along
the continuum.
For purposes of the discussion, a caregiver will be defined as a relative or friend
who provides unpaid help to people with cancer as they are unable to do things for
themselves because of the illness or related disability. This kind of help can include
household chores, finances, personal or medical needs (Levine 2004). The preva-
lence of caregiving in cancer is not currently known. However, we do know that
an estimated 1.3 million people are diagnosed with cancer in the United States each
year, and that many of these people are living longer with the disease (National Can-
cer Institute 2005). From this, we can infer that many of the nations’ caregivers are
taking care of their loved ones with cancer. Caregivers of cancer patients are expected
to function broadly, providing direct care, assistance with activities of daily living,
case management, emotional support, companionship, and medication supervision
(Levine 2004). Caregivers assume such tasks for a variety of reasons, including a
sense of familial obligation and loyalty, altruism in the face of their loved one’s
suffering, as well as more practical reasons such as lack of paid help and lack of
insurance coverage for services (Family Caregiver Alliance 2011). Caregivers of
5 Education, Training, and Support Programs for Caregivers of Individuals with Cancer 81
people with cancer may assist specifically by providing meals, providing transporta-
tion, completing insurance forms, and providing such personal care as toileting and
dressing. Caregivers may be expected to provide patients with emotional support,
conversation, and other forms of distraction.
Generally speaking, patients with cancer experience side-effects and symptoms as
a result of advancing disease and such treatment as chemotherapy, radiation therapy
and surgery. As many people with cancer experiences pain at some point along the
disease trajectory, caregivers are likely to be called upon to help manage cancer-
related pain. An overview of the caregiver’s role in cancer pain management can
serve as a prototype for any type of symptom management during the course of
cancer diagnosis and treatment.
The prevalence of pain in patients with cancer is now widely known. Thirty to
45% of cancer patients experience pain at diagnosis and in the early stages of the
illness, while an average of 75% of patients with advanced cancer have pain (Agency
for Health Care Policy and Research [AHCPR] 1994). Cancer pain management is
therefore a major focus of the caregivers’ role. First, caregivers function as nurse’s
aides when they are required to assess and report the patient’s pain and manage the
pain management regimen. Caregivers must attempt to determine the source, nature,
and amount of pain. They must keep records and control the technical aspects of
pain management. Caregivers frequently dispense pain medication or remind the
patient to take a scheduled dose, which requires decision-making about which type
of medication to give, when, and in what dosage (Ferrell et al. 1995). It generally falls
to the caregiver to fill and refill pain prescriptions, which presupposes such skills as
proficiency with insurance reimbursement, the ability to follow medical instructions,
and the ability to anticipate the need for refills ahead of time (Glajchen 2003). With
increasingly high-tech home care and pain management protocols, family caregivers
are frequently expected to help manage patient-controlled analgesia pumps, epidural
catheters, and home infusions. The technical aspects of these interventions can be
terrifying for even the most sophisticated of caregivers. In addition to managing the
patient’s pain regimen, the caregiver is expected to identify and report treatment side
effects or new symptoms.
Cancer patients may face an array of side-effects and symptoms as they move
along the disease trajectory. Fatigue, drowsiness, and sleep problems have been
reported in 51–68% of cancer patients; nausea, vomiting, anorexia, and cachexia
have been reported in 10–40% of patients; while reports of anxiety, mood disorder,
and depression are well-documented in 25–50% of cancer patients (National Cancer
Institute 2005; Hickock et al. 2005). Management of these complicated side-effects
frequently falls to the caregiver in the outpatient setting.
Finally, caregivers may be expected to function as legal and medical assistants
for patients with cancer. Patients face an overwhelming array of decision-making
during the course of diagnosis and treatment. Decisions about treatment options,
role changes, and finances are generally made by the patient-family unit (Vachon
1998; Warner 1992). Caregivers are expected to manage home care professionals;
manage medical emergencies; facilitate transitions (e.g., home to hospital to hospice
82 M. Glajchen
or long-term care facility); obtain medical, financial, and legal advice; and prepare
for the death and funeral.
In summary, caregivers of cancer patients have multifaceted role expectations and
needs, which they may be ill-prepared to assume. In addition, caregivers have their
own emotional responses to the patients’ diagnosis and prognosis, and may require
coaching and emotional support separate and apart from the patient (Given et al.
2001; Kozachik et al. 2001). Despite the high prevalence of family caregiving, the
healthcare system does little to address caregivers’ needs and concerns: They are
automatically assumed capable of performing complex medical care tasks at home,
their symptom management and coping skills are seldom appraised, and their own
physical health is rarely considered (Northouse et al. 2002). Moreover, in this era of
high patient volume and brief patient appointments, caregivers may be acknowledged
only briefly during the decision-making and discharge planning portions of patients’
medical visits (Glajchen 2003).
Unmet Needs of Caregivers
Extensive research has been performed to identify the needs of caregivers, and to
characterize their unmet needs. Shelby et al. (2002) reported their findings from
a comprehensive literature review regarding those needs most often reported by
cancer patients and their caregivers. They found that 60–90% of patients and their
caregivers reported a need for assistance in at least one area. The most frequently
reported needs related to personal adjustment to illness (38–70%), psychosocial
support (30–60%), transportation (31–58%), financial assistance (50–52%), home
care (10–42%), and medical information (3–29%). Although most of the literature
has focused on adult caregivers of adult cancer patients, there is a growing body
of literature on grandparents, young adults, and children as caregivers (Hunt et al.
2005; Lewis et al. 2005; Sands et al. 2005).
Caregivers of cancer patients frequently report unmet needs in physical, psy-
chosocial, economic and instrumental, or concrete, domains. In their review, Shelby
et al. (2002) found that 18–30% of patients and caregivers reported that assistance
for at least one need was unmet. Findings from recent landmark studies also convey
a picture of rising expectations and unmet needs for caregivers carrying out a variety
of medical tasks at home (Emanuel et al. 2000; Schulz and Beach 1999; United
Hospital Fund 2000). For example, Emanuel and his team interviewed terminally ill
adults and their caregivers to determine how their needs for assistance were being
met. Unmet needs were reported by 87% of patients, who required help with trans-
portation (62%), homemaking services (55%), nursing care (29%), and personal
care (26%). Most patients relied completely on family and friends to provide this
assistance; only 15% relied on paid assistance (Emanuel et al. 2000). For caregivers
of cancer patients, such care may translate into 20 or more hours of care a week, the
equivalent of an unpaid part-time job (United Hospital Fund 2000).
Impact of Caregiving on Quality of Life
Caregivers of cancer patients have described the experience as impacting many do-
mains of life, including medical, psychosocial, and economic. In general, caregiving
is associated with high levels of chronic stress and emotional strain, especially in the
context of an illness such as cancer. For example, caregivers of patients with cancer-
related pain report even higher levels of depression, tension, and mood disturbance
than caregivers of pain-free patients (Miaskowski et al. 1997). From a physical and
practical perspective, caregiving has been described as relentless. While such phys-
ical impact is often obvious to the healthcare professional, the emotional toll of
caregiving cannot be overlooked. In this realm, caregivers describe stress and strain
that can parallel or surpass that of the patient. One prospective population-based co-
hort study found that caregiver strain increased mortality risk by 63% within 5 years.
Specifically, after adjusting for sociodemographic factors, and underlying caregiver
disease, older spousal caregivers who were providing care and experiencing care-
giver strain had mortality risks that were 63% higher than noncaregiving controls
(Schulz and Beach 1999).
The cancer patient’s stage of illness and goals of care have been shown to impact
the burden of caregiving. Caregivers of patients receiving palliative care have been
shown to have significantly lower quality of life and physical health scores than
caregivers of patients in active, curative treatment (Weitzner et al. 1999). The physical
and emotional demands of caregiving reach their peak as the disease progresses to
the terminal phase. In addition to assuming many of the patients’ prior domestic
responsibilities, family caregivers may have to forego social activities and work
duties that result in job insecurity and isolation. Caregivers providing end-of-life care
have been shown to experience increased emotional distress, regardless of the amount
of care provided, when limited in their ability to participate in valued activities and
interests (Cameron et al. 2002).
Not only has caregiver burden been identified as an issue during the patient’s life,
inefficient psychological symptom control for patients during the last months of a
cancer patient’s life may predispose the surviving partner to long-term psychological
morbidity (Bass et al. 1991; Valdimarsdóttir et al. 2002). Bass et al. (1991) evalu-
ated the influence of caregiving and bereavement support on adjusting to an older
relative’s death. They found that caregivers’ perceptions of the support provided to
the patient before death had a significant impact on their subsequent bereavement
adjustment. In fact, the caregiver’s perception of the patients’ care was more impor-
tant for surviving spouses’ and children’s adjustment than support given directly to
these family members during bereavement.
The Influence of Culture and Ethnicity on Caregiving in Cancer
Studies show that Hispanic and African-American patients and caregivers underuti-
lize community health resources, including counseling and support groups, home
care, residential care, and hospice services. The reasons for this underutilization are
84 M. Glajchen
many. One important reason is that strong ties may prevent minority caregivers from
seeking help outside of the family unit (Cox and Monk 1996). In a study compar-
ing African-American, Caucasian, and Hispanic caregivers, Guarnaccia and Parra
(1996) found that 65% of Hispanic patients and 60% of African-American patients
lived with the caregiver. The minority families relied more on informal caregiving
from friends and relatives and had larger social support networks than the Caucasian
families. However, this increased the sense of obligation to provide care for older
family members which is associated with more caregiving hours, greater resignation
about caregiving, higher caregiver strain, and a larger reduction in household income
than that reported by Caucasian caregivers (Cox and Monk 1996; Guarnaccia and
Parra 1996). A study by Covinsky et al. (2001) analyzed reports of employment loss
due to caregiving. Results showed that African-American and Hispanic caregivers
were more likely than Caucasian caregivers to reduce their work hours to care for the
patient. In addition, minority caregivers were reluctant to use formal nursing home
services for their loved one. The decision to reduce work hours rather than place
their relative in a nursing home was associated with increased psychological, social,
and financial burden.
Accepting the burden of caregiving may lead to depression. Caregivers who have
no outside help are more depressed than those who receive help from secondary
informal caregivers or formal resources. Despite reporting stress, many Hispanic
and African-American caregivers do not seek outside help even when they are aware
of support groups and other resources. The barrier to care may be a reluctance to
share familial problems with outsiders. However, minority caregivers respond better
to direct recruitment efforts through personal contacts and face-to-face interviews,
strategies that are often too labor-intensive for typical caregiver programs.
Similarly, underuse of hospice services has been reported in both the African-
American and Hispanic communities. For African-Americans, barriers to hospice
use include lack of availability, lack of community awareness, lack of trust in social
service providers, and misperceptions of the role of hospice services. Since African-
Americans rely heavily on closely knit groups of friends and family, they are less
inclined to welcome strangers, such as hospice workers, into their networks (Gordon
1995). In addition, a prerequisite to hospice care is the presence of a primary caregiver
in the home. Since African-American family members often have to work, no one
is at home to care for the patient, and the patient may thus be barred from hospice
care. Members of the African-American community may also be uncomfortable with
the concept of palliative care, which seems to encourage the patient to give up and
stop fighting (Gordon 1995). These cross-cultural issues are important in assessing
caregivers’ needs and in designing clinical and educational programs to meet those
needs (Glajchen 2004).
Caregiver Intervention Strategies
Despite the fact that caregiver burden and distress have been studied since the early
1980s, few documented, effective intervention strategies have been developed to sup-
port persons caring for patients with cancer. The lack of definition and standardization
in type of caregiver intervention, method of service delivery, and outcome variables

present major challenges in their evaluation and replication.
The overall goal of interventions delivered to caregivers should be to promote the
caregiver’s physical and emotional well-being so that the caregiver can more effec-
tively attend to the needs of the patient with advanced cancer (Given et al. 2001). The
goals of interventions developed for caregivers have focused on increasing knowledge
through education and information; reducing anxiety and depression through coun-
seling and psychotherapy; providing medical care and emotional comfort through
palliative and hospice home care; and increasing confidence through problem-solving
and skill-building.
Goals of Information or Educational Interventions
Education is an effective tool for helping cancer patients and their families under-
stand the disease process, pain, other symptoms and treatment options (Glajchen
et al. 1995). Clinicians generally agree upon the value of providing information
to caregivers. Information tailored to the caregiver’s situation provides them with
guidance for implementing care. More importantly, adequate information may help
reduce the stress of caregiving and the associated feelings of inadequacy and helpless-
ness arising from ambiguity (Given et al. 2001). Information about the disease trajec-
tory, the anticipated course, and the range of emotions experienced by families helps
normalize the experience and enhances the sense of control so often missing in cancer.
Despite this widespread agreement, however, one of the most common frustrations
cited by caregivers is the difficulty they experience in obtaining information from
healthcare providers, especially physicians and nurses. The most important periods
along the disease trajectory for caregivers to receive information appears to be at
the time of diagnosis, during the period of hospitalization, at the initiation of new
treatment, at the time of recurrence, and during the end-of-life phase (McCorkle
and Pasacreta 2001). However, owing to the chronic nature of cancer, and the range
of tasks that need to be mastered at different points, caregivers’ information needs
change over time (Wong et al. 2002).
Caregivers want factual information about cancer, its treatment, related symptoms
and side effects. They need specific details about what to do and how the particular
cancer is likely to behave. Caregivers want to be involved in treatment planning,
however, they also want to be acknowledged for their expertise, their own needs, and
their hard work (United Hospital Fund 2000). Unfortunately for caregivers, studies
have shown that doctor-patient communication is low in patient-caregiver centered-
ness, medical issues tend to dominate, and systems obstacles such as lack of time
and fragmentation in care further hinder information exchange (Wong et al. 2002).
In a recent survey of the information and education needs of cancer outpatients
and their caregivers, the priority areas listed were management of pain, weakness and
fatigue, followed by the types of services available to facilitate patient care at home
(Wong et al. 2002). In the area of pain management, caregivers need to understand
86 M. Glajchen
pharmacologic issues and medication instructions. Specifically, caregivers have been

shown to need instruction about which medications to use for pain relief, when to give
the medication, how to assess the efficacy of pain control, how to monitor for side
effects, and how to identify negative results or ineffectiveness (Ferrell et al. 1995).
The role of family caregivers in fostering or hindering treatment compliance
should not be underestimated. Caregivers’knowledge and attitudes about such symp-
toms as pain and fatigue management may influence the patient. If caregivers harbor
fears of addiction, overdosing, or indirectly causing discomfort through side effects,
they may guard the medication supply, limit its use, and undermedicate the patient
(Juarez and Ferrell 1996). Caregivers need training in the management of side effects,
as these can cause patients to abandon their treatment protocols for cancer. Educat-
ing caregivers about anticipated side effects and strategies for their amelioration is,
therefore, essential.
Caregivers have been shown to benefit from education in nonpharmacologic strate-
gies for reducing such symptoms as pain, fatigue, depression, and anxiety, including
such techniques as massage, the use of heat and cold compresses, energy conser-
vation, rest and restoration strategies, relaxation and distraction. Caregivers have
responded favorably to training in the use of relaxation techniques, as such skills
promote confidence and reduce helplessness. Similarly, skills in positioning with
pillows, mobilizing the patient, and assisting with ambulation in an effort to promote
pain relief and reduce fatigue can be taught (Ferrell et al. 1995). Caregivers report
that they learn these skills through trial and error, and would like more assistance
from the formal healthcare system (Given et al. 2001).
Especially important in cancer is the need to educate caregivers about alternative
health practices that can exacerbate unwanted symptoms and undermine treatment
effectiveness. Toxic side effects such as irreversible neuropathy, bleeding, and elec-
trolyte imbalance can result from alternative medical approaches to cancer treatment
(Montbriand 1994). Desperate families may make erroneous decisions based upon
misinformation in the media and on the Internet. Caregivers must be educated on the
importance of reporting all alternative health practices to a healthcare provider.
Importantly, caregivers must be educated about the support services that are
available to them. Several studies have shown that patients and caregivers under-
utilize available resources owing to perceived lack of access, lack of information or
emotional exhaustion.
Are Informational or Educational Interventions Effective?
Although several descriptive investigations have reported the value of educational

programs for caregivers, a paucity of outcome data exists. In their review, Pasacreta
and McCorkle (2000) identified several studies designed to evaluate the effectiveness
of an educational intervention program. Two of the studies (Carmody et al. 1991;
Grahn and Danielson 1996) loosely supported the usefulness of educational in-
tervention programs for caregivers; however, each of the studies had important
methodological flaws, especially in delineating outcome variables. Therefore, lim-

ited information could be gathered from these studies other than the implication that
the programs were beneficial for the caregivers.
A handful of the studies reviewed by Pasacreta and McCorkle (2000) were de-
signed to evaluate an educational intervention titled “I Can Cope,” developed by
Johnson et al. or some variation of this program (Johnson 1982; Diekmann 1988;
Reele 1994). The “I Can Cope” program was designed to teach patients about can-
cer, its treatment, and physical and psychological management techniques. However,
caregivers often attended the program and some variations of the program were de-
veloped specifically for them (Johnson and Norby 1981). The findings from the
studies were mixed. Participants in one of the studies reported increased knowledge,
reduced anxiety, and an improved sense of purpose in their lives (Johnson 1982).
In another study, nonattendance was a problem, which the researchers attributed to
the group format and the fear associated with cancer (Diekmann 1988). Participants
in the third study reported the group experience to be a positive one, although the
program did not appear to improve quality of life or coping skills (Reele 1994).
Robinson et al. (1998) developed a 6-hour psychoeducational program that fo-
cused on communication, symptom management and community resources for
caregivers of cancer patients. Participants were evaluated at baseline and again eight
weeks later. However, although caregivers reported feeling less overwhelmed af-
ter the series, the outcomes and specific measures were not reported by the authors,
making replication impossible. In addition, recruitment difficulties further hampered
program evaluation.
A successful educational intervention program reported in the literature was devel-
oped by Ferrell et al. (1995). These researchers reported on a successful educational
intervention used with 50 family caregivers of elderly cancer patients. Caregivers
were educated in pain assessment, pharmacologic interventions, and nonpharma-
cologic interventions. Caregivers participating in this program reported improved
knowledge and quality of life.
Edgar et al. (2002) reported their experience of a pilot study conducted to evaluate
an Internet intervention for cancer patients and their family members. Participants
received a one-on-one teaching session with a medical librarian where they learned to
find information specific to their needs. Follow-up interviews found that the sessions
were well received and participants reported positive well-being, in large part due to
the intervention. Other types of intervention are less well described in the literature.
They are: coaching patients and families to ask questions; booklets, pamphlets, fact
sheets, and information cards; touch screen information systems; webcasts; and
computerized information systems (Wong et al. 2002).
Although many more educational programs are provided in a variety of settings
across the country, it is difficult to review or compare them for several reasons. First,
some of the most innovative programs are developed at the local level, in small social
service agencies that lack the capability for outcome measurement or publication.
Second, in the context of real practice, caregiver programs may be offered in such dis-
parate settings as the hospital, church, area agency on aging, social service agency or
cancer advocacy group, further complicating replication and comparison. Third, the
88 M. Glajchen
lack of standardization in format and approach can leave the reader wondering about
such issues as the needs assessment, if any, topic selection, peer versus professional
presentation, didactic versus interactive format, and so on. Last, the field of oncology
has seen a proliferation in multimedia educational and informational programs for
both cancer patients and their caregivers, in such formats as videotapes, CD-ROMS
and on-line programs. The lack of centralization, coupled with differences in format
and content, further complicates evaluation and replication.
Goals of Counseling or Support Interventions
Several different approaches to group counseling can be identified in the literature.

The most common model is called “supportive-expressive group therapy” and is
characterized by mutual support, emotional expression and existential discussion
(Classen et al. 2001; Kissane et al. 2004). Other approaches to group counseling in-
clude those with a cognitive behavioral approach, aimed at the acquisition of specific
coping skills, and psychoeducational groups, in which the focus is on information
provision. Counseling or group support intervention efforts are generally based on
the assumption that caregivers will be better equipped to meet their challenges if
they are given the opportunity to discuss common problems and fears with health-
care professionals or others in a similar situation. Psychotherapeutic interventions
are designed to reduce caregiver distress by helping caregivers adjust psychologically
to the demands of caregiving (Given et al. 2001).
These interventions are typically designed to enhance morale, self-esteem, coping,
and sense of control, while reducing anxiety and depression. Although providing
specific information about specific aspects of patient care is frequently a component
of these interventions, the focus of counseling or group support is ensuring that
caregivers are equipped to meet their caregiver challenges. Caregivers with a low level
of emotional support have been identified as being more depressed over time (Nijboer
et al. 2001). In contrast to patient support systems, which are widely available, the
sources of support for caregivers have lagged far behind those provided for patients
(McCorkle and Pasacreta 2001).
Individual counseling is designed to provide caregivers with support, education
and problem-solving or coping skills. However, these interventions are expensive and
may prove too time-consuming for working or highly distressed caregivers (Harding
and Higginson 2003).
Are Counseling or Support Interventions Effective?
Interventions designed to reduce the emotional impact of caregiving have received

some attention in the literature. Interventions primarily include individual counseling
and group support.
There have been few reports of the effectiveness of individual counseling in the
literature. However, the data that are available suggest that individual counseling is
effective in reducing caregiver burden. Emanuel et al. (1999) found that caregiver
burden was significantly reduced when physicians practiced active listening. In their
study, caregivers experienced less burden and distress if they felt that the treating
physician listened to their needs and opinions. Toseland et al. (1990) reported that
daughters and daughters-in-law who were primary caregivers of frail elderly parents
had more improvement in psychological functioning and well-being with individual
counseling than with group counseling. Both individual counseling and group coun-
seling resulted in significant improvements in coping with caregiving stress. Group
intervention produced greater improvements in caregivers’ social supports (Toseland
et al. 1990).
Goldberg and Wool (1985) reported on a support intervention for lung cancer
patients and their spouses. The goals of the intervention were to provide support
systems, promote emotional expression, and facilitate negotiation of the healthcare
system. No difference between attendees and nonattendees was found in psychologi-
cal functioning. The authors suggested that the reason for the negative findings might
have been a result of the relatively positive adjustment of couples in both groups. Sabo
et al. (1986) reported on a support group created for husbands of women with breast
cancer. Attendance at the support group was low, only 6 of 24 husbands participated.
Attendees, however, reported significantly more communication with their wives.
A more recent psychoeducational intervention for family caregivers reported
mixed results. In this program, caregivers were randomized into two groups, one
receiving standard care, the other receiving standard care plus the new intervention
delivered through home visits, phone calls, a guidebook and an audiotape incor-
porating self-care strategies. Caregivers were evaluated with respect to caregiving
competence, self-efficacy and anxiety. No treatment effects were reported, although
caregivers in the treatment group reported a more positive caregiver experience
(Hudson et al. 2005).
In summary, intervention in the support group format provides information and in-
formal support networking for caregivers who are receptive to this type of assistance.
Social support needs appear to respond best to group intervention. Some caregivers
may prefer individual counseling by professionals. In addition, psychological issues
may be most effectively managed with individual intervention. Therefore, the types
of problems and issues specific to an individual caregiver should guide the most
appropriate type of intervention.
Future research should address what factors lead caregivers to attend a sup-
port group program, and more attention should be paid to outcome measurement
in caregiver support groups. Emphasis should be placed on matching the needs
of caregivers to particular components of support groups. Most support groups in
the United States are attended by older Caucasian women caring for spouses with
cancer. Future programs should target hard-to-reach segments of the caregiver pop-
ulation, including men, young caregivers, and caregivers from other cultures. Lastly,
individual-specific issues, such as the timing of education intervention relative to
cancer diagnosis, gender, and caregiver-role, should guide future efforts in designing
support interventions.
90 M. Glajchen
Goals of Home Hospice and Palliative Care Interventions
Hospice care involves a team-oriented approach of expert medical care, pain manage-
ment, and emotional and spiritual support tailored to the patient’s wishes. Emotional
and spiritual support are extended to the family and generally this care is provided in
the patient’s home or in a home-like setting (National Hospice and Palliative Care Or-
ganization [NHPCO] 2012). Palliative care is the active total care of patients whose
disease is not responsive to curative treatment. Control of pain, of other symptoms,
and of psychological, social and spiritual problems is paramount. The goal of pallia-
tive care is the achievement of the best possible quality of life for patients and their
families (World Health Organization [WHO] 1990). Since 1990, palliative care has
arisen as a new specialty in medicine, with the goal of extending the principles of
hospice care to a broader population that could benefit from this type of care earlier
in the disease process. The hallmarks of both hospice and palliative care are equal
attention to both the physical and psychosocial aspects of care, and involvement of
the patient and caregiver as the unit of care.
As a life-threatening disease approaches the end stage, the needs of both the pa-
tient and caregiver increase. As a patient becomes more debilitated, the demands for
nursing care, social support, financial resources, and spiritual care increase consider-
ably. Extensive research has shown that caregivers providing palliative care are at risk
for developing a variety of psychological and physical problems, including anxiety,
depression, fatigue, reduced self-esteem, and somatic health problems (Chentsova-
Dutton et al. 2000; Haley et al. 2001; Kinsella et al. 2000). Hudson et al. (2002)
conducted focus groups with current lay caregivers, bereaved lay caregivers, and pal-
liative care nurses. Participants reported that caregivers were frequently unprepared
for their role and desired more guidance and support from healthcare professionals.
Steele and Fitch (1996a) found that caregivers of palliative care patients required
time for themselves away from the home and time for their own personal needs. In
addition, caregivers reported insufficient time to rest and did not experience adequate
sleep. Caregivers needed to learn ways to help patients maintain some independence.
Caregivers of home hospice cancer patients have reported that effective coping strate-
gies include learning more about the problem, keeping busy, thinking positively, and
talking about the problem with family and friends (Steele and Fitch 1996b). To ad-
dress caregivers’ expressed needs for respite and personal time, the use of volunteers
and short-term admission to inpatient facilities have been tried.
Are Home Hospice Care Interventions Effective?
Several studies suggest that participation in a hospice program is beneficial for both
patients and caregivers. Jepson et al. (1999) examined changes in the psychosocial
status of caregivers of cancer patients. They were particularly interested in whether
the caregivers’ own physical problems and the patient’s participation in a home care
intervention influenced caregivers’ psychosocial adjustment. Patients were randomly
assigned to a control group or to an intervention group in which they received

a Standardized Nursing Intervention Protocol (SNIP) over a 4-week period. The
intervention included a component through which caregivers were taught to problem
solve, administer medications, and provide self-care behaviors. Overall, the psy-
chosocial status of the caregivers in both groups improved. However, caregivers with
physical problems of their own were found to be at risk for psychological morbidity.
In another study, terminally ill patients in a VA were randomly assigned to receive
hospice care. Follow-up evaluation through the time of death showed that caregivers
in the hospice program reported significantly less anxiety and greater satisfaction with
care. These differences were attributed to the hospice staff better meeting caregivers’
needs (Kane et al. 1986).
Other studies have demonstrated the positive influence of hospice home care on
caregivers’quality of life and psychosocial status (McMillan and Mahon 1994); how-
ever, there is a surprising paucity of literature in this area. Most of the research in
this area has focused on the impact of hospice care on the subsequent bereavement
adjustment of caregivers. Levy et al. (1993) studied the effect of participation in a
bereavement support group on adaptation in widows and widowers over 18 months.
Both support group attendees and nonattendees had significant decreases in depres-
sion, anger, anxiety, subjective stress, and psychotropic medication use over the
18-month course. However, the number of support groups attended appeared to
account for significant amounts of variance regarding these factors. The authors con-
cluded that further research was required to determine the efficacy of support groups.
McCorkle et al. (1998) studied whether specialized oncology home care services
provided to patients with lung cancer influenced bereavement and psychological
distress among survivors. Participants were randomized to an oncology home care
group, a standard home care group, or an office care control group. Spouses of patients
in the oncology home care group had significantly lower psychological distress than
spouses in either of the other groups. These findings have been corroborated by
others.
Numerous studies have found that involvement in a hospice home care program
did not influence caregiver burden or adjustment (Haley et al. 2001; Kane et al.
1986; McMillan and Mahon 1994, McMillan 1996; Meyers and Gray 2001). The
lack of benefit was attributed to the strong correlation between quality of life scores
for patients and their caregivers. That is, although hospice home care is thought to
ameliorate some caregiver burden, the negative psychological and physical health
experienced by patients at the end of life is reflected in reported caregiver burden.
Goals of Problem-Solving and Skill-Building Interventions
Throughout the caregiving process, caregivers are required to take on a variety of new
and complex roles. Yet family members assuming the care of a patient with serious
illness frequently lack the requisite resources or skills to undertake this role. Some
caregivers may have difficulty accessing the healthcare system and utilizing support
92 M. Glajchen
services effectively; others have difficulty making decisions and solving problems;
and still others have difficulty coordinating the tasks of healthcare professionals and
other family caregivers.
Schumacher et al. (2000) identified nine core caregiving processes: (1) monitoring
(ensuring that changes in the patient’s condition were noted), (2) interpreting (making
sense of what was observed), (3) making decisions (choosing a course of action),
(4) taking action (carrying out decisions and instructions), (5) providing hands-
on care (carrying out nursing and medical procedures), (6) making adjustments
(progressively refining caregiver actions), (7) accessing resources (obtaining what
is needed), (8) working together with the patient (sharing illness-related care in a
way that was sensitive to the personhood of both patient and caregiver), and (9)
negotiating the healthcare system (ensuring patients needs were adequately met).
Mastery of each of these caregiving processes and skills can be daunting indeed for
family caregivers.
Houts et al. (1996) have developed the most widely recognized and well-studied
educational model for caregiver related problem-solving and skill-building. The
program, summarized by the acronym COPE (Creativity, Optimism, Planning,
and Expert Information), was designed to help uninformed family caregivers as-
sume caregiving responsibilities. The program was based on extensive research on
problem-solving training and therapy. The goal of the model is to maximize the
caregivers’ effectiveness, sense of efficacy and satisfaction. The “Creativity” com-
ponent of the program teaches caregivers to develop creative solutions to challenging
situations where creativity is essential. The “Optimism” component addresses the
emotional aspect of problem-solving, and combines optimism with realism, recog-
nizing both the seriousness of the problem and the expectation that something can be
done to improve the problem. The “Planning” aspect of the program addresses both
problem-solving effectiveness and emotional distress, and helps caregivers develop
plans to meet their individual situations. The “Expert Information” component of
the program teaches caregivers what they need to do and the rationale for what they
do. Houts et al. (1996) contend that their model empowers caregivers and patients
for coping with illness and can help moderate caregiver stress.
Are Problem-Solving or Skill-Building Interventions Effective?
Blanchard et al. (1996) tested the effectiveness of a 6-session problem-solving inter-

vention with spouses of cancer patients who had been diagnosed more than 3 months
prior and who were not eligible for hospice care. In a randomized trial, the study com-
pared caregivers involved in the intervention with caregivers who received usual care.
A problem-solving intervention was used to help spouses solve individually identified
problems. At 6 months, spouses who received the intervention were less depressed,
however, there were no other effects on coping, social support, or psychological
well-being. This study is significant in that the researchers studied patient-caregiver
distress after a diagnosis of cancer, however, before terminal illness. In another
study, 237 cancer patient/caregiver dyads were randomized into two groups, one
for conventional care, and the other, a 20-week experimental group. The focus of
the intervention was improvement in caregivers’ symptom management ability, and
reduction in their distress. However, the nursing intervention was not found to be
effective in decreasing caregiver depression (Kurtz et al. 2005).
The majority of problem-solving or skill-building interventions are contained an
informational or support component of the program, and are described in the next
section.
Are Interventions that Incorporate Multiple

Components Effective?
Several comprehensive caregiver interventions have been developed that constitute

more than one type of intervention.
Heinrich and Schag (1985) developed an educational and problem-solving in-
tervention called the Stress and Activity Management (SAM) program. This study
used a randomized design where participants were assigned to a treatment group or
control group. The intervention was designed to educate cancer patients and their
spouses about cancer and its impact, to teach specific skills for managing stress and
daily problems, and to promote problem-solving. Participants in both the control
and treatment groups improved in psychological adjustment, depression, and anx-
iety over time; however, this was attributed to the passage of time rather than the
program. The program, however, did increase participant’s knowledge about cancer
and coping. Caregivers in the treatment group were more satisfied with the education
and support they received than caregivers in the control group.
Kaasalainen et al. (2000) designed a quasi experimental study to evaluate Caring
for Aging Relatives Group (CARG), a program that provides information and support
to female caregivers. Though not specifically designed to evaluate the role of an
intervention in caregivers of cancer patients, results from this study are included
because it provides noteworthy information in several respects. The program was a
well-described, replicable intervention with a clear delineation of outcome variables.
The group that received the intervention was compared with a matched comparison
group regarding morale, social support, and information. The educational component
of the program included providing information on the aging process, communication
and problem-solving skills, stress management techniques, community resources,
and issues related to relocation of the elderly. Social support was provided through
leaders and other group members by encouraging caregivers to express their feelings,
share experiences, and assert more control in their own situations. Results of this
study were partially supportive of the usefulness of a caregiver support program.
Information was gained and caregivers perceived the support program as helpful;
however, morale, which was high at pretest, was maintained, but not improved, at
the conclusion of the program.
94 M. Glajchen
Pasacreta et al. (2000) reported favorable results based on an evaluation of par-

ticipant characteristics before and 4 months after attendance at a Family Caregiver
Cancer Education Program (FCCEP). One component of the program focused on
providing information on the medical realities of cancer such as managing symp-
toms, improving technical competence, and administering medication to patients in
the home. The program also contained a skill-building component to address such
issues as talking to the patient’s physician, managing other aspects of the healthcare
system, handling role and relationship changes in the family, caring for medical
equipment, managing uncomfortable symptoms, talking to the children, managing
other jobs and responsibilities, handling insurance and financial issues, dealing with
emotional reactions, finding and asking for help, and maintaining self-care. Care-
givers were invited to participate in the program during or after transition points in
the patient’s disease (e.g., diagnosis, initiation or cessation of treatment, recurrence,
or shift from curative to palliative treatment). The number of caregivers who said
they were well-informed and confident about caregiving increased after participa-
tion in the program. In addition, although the intensity of caregivers’ tasks increased
throughout the program, the caregivers’ perceptions of burden did not increase, and
perceptions of their own health improved over time.
Recommendations for the Future
To date, although an abundance of information exists regarding the needs of care-

givers, there are few documented, effective strategies to guide family members caring
for patients with cancer. For example, no research has compared such interventions
as education, home care, counseling and problem-solving to each other. The lack
of standardization, absence of scientific rigor and obstacles to the implementation
of controlled research conditions under real world “messy” circumstances makes
such comparisons difficult. Experimental research has only scratched the surface by
testing interventions designed to meet the needs of caregivers caring for people with
cancer. Clearly, examining the efficacy and effectiveness of caregiving interventions
is in its infancy and much work remains to be done. Other research methods such as
the use of simple, well-designed outcomes measures and single case studies can be
used to further our knowledge base where randomized controlled trials are lacking.
Increasing Use of Formal Support Services A crucial area for the future would be
determining why such a small number of caregivers use formal services, and how
access to services can be improved. Only 15–20% of caregivers report using formal
support services. Little is known about the reasons for underutilization; however,
hypothesized reasons include lack of knowledge about available services or how
to access them, financial constraints, fear of the stigma of accepting help, family
resistance, patient refusal, and transportation problems (Shelby et al. 2002). It was
noted in several studies that recruitment and retention of caregivers in intervention
programs was a challenge. A number of reasons have been cited for low participation
in caregiver programs, including employment, family obligations, fear of leaving the
patient alone, and physical restrictions (Pasacreta et al. 2000). To increase access
to existing caregiver support programs, a number of strategies can be used. First,
caregiver resources can be included as a routine part of cancer treatment. Second,
needed services can be established in local communities rather than major medical
centers. Third, innovative technology can be used to reach caregivers where they live
and where they work.
Determining an Effective Intervention “Dose” A second area for future clinical
and research programs would be determining what constitutes a therapeutic “dose”
of social or instrumental support for caregivers. Desired outcomes of interventions
need to be clearly articulated and the “dosage” of the intervention needed for the
required effect must be established. For example, the gold standard for bereavement
counseling is thought to be 13 months following the death of a loved one. Managed
care insurance programs may offer time-limited counseling of 6–8 weeks duration.
In order to develop effective programs that will be widely implemented, programs
must be feasible and cost effective. Future programs should therefore determine
whether caregivers need ongoing support, or whether services are most needed at
certain transition points along the illness trajectory.
Determining Whether Caregiver Burden Can Be Predicted Determining whether
caregiver burden can be predicted would be enormously helpful in designing care-
giver services. Factors that predict those caregivers at highest risk for distress and
noncoping need to be identified. In addition, healthcare professionals must be able
to easily identify caregivers who are already experiencing high levels of caregiver
burden. Several risk factors for increased caregiver burden or distress have been iden-
tified in the current literature, including caregiver illness, (McCorkle and Pasacreta
2001), female gender (Yee and Schulz 2000), and lower education level (Cameron
et al. 2002). Although many screening instruments exist to assess caregiver burden
and distress, they are inadequate to address the entire range of dimensions affected
by caregiving responsibilities among caregivers of people with cancer. Some mea-
sures are disease specific, while others examine only limited domains of caregivers’
experiences. A simple way to screen caregivers for high levels of distress, stemming
from depression, social isolation, physical burden, and financial strain is needed.
Ideally, the tools used to screen and assess caregiver burden should be short, easy
to administer, incorporate both positive and negative aspects of caregiving, and both
objective and subjective burden.
Customizing Programs to Meet the Needs of Caregivers Future clinical programs
must address how caregiver services can be customized to meet the needs of care-
givers, rather than the needs of those for whom they care. Consideration of caregiver
characteristics is a critical element in the caregiver intervention equation. Without
a clear understanding of individual caregivers and their unique personal and psy-
chological needs, interventions will be designed for the average caregiver, and will
produce only average results. Interventions should be customized by gender, age,
and relationship to the patient. All caregivers are not alike. For example, much of
the current literature on caregiving assumes that caregivers are older than the age
96 M. Glajchen
of 65, however, these demographics are changing. Similarly, men are notoriously
reluctant to attend support groups, however, they have demonstrated the willingness
to participate in programs involving the telephone, computer, or videotapes.
Developing Programs that Work Across Cultural and Ethnic Groups Ethnicity as a
predictor of outcome in caregiving has been noted in the literature. Few interven-
tions tested to date, however, have evaluated the cultural and ethnic responses to
interventions. A family’s social and ethnic background might influence perceptions
of healthcare issues, including access to care issues and roles in caring for the patient.
A comprehensive literature review of the racial, ethnic, and cultural differences in
the dementia caregiving experience found that there may be differences in the stress,
psychological outcomes, and variables related to service utilization among caregivers
of different racial, ethnic, and cultural groups, though the reasons for the differences
were unclear (Janevic and Connell 2001). Whether the same forms of education,
training, and support work across cultural and ethnic groups for caregivers of cancer
patients remains to be determined.
Current and Future Challenges
Public Policy Perspectives
Most family caregiving in the United States is provided in the private realm of
family relationships and sense of duty. As such, public policy depends on unpaid
family caregivers “doing whatever needs to be done” (Levine 2004). Only recently
has federal policy recognized the service needs of family caregivers themselves
(Feinberg and Newman 2004). Although this legislation is not specifically designed
for caregivers of people with cancer, this subgroup of caregivers could be eligible
for services in some states.
Passage of the National Family Caregiver Support Program (NFCSP) under the
Older Americans Act (OAA) Amendments of 2000 marks the first federally-funded
state level program to support the service needs of caregivers of older persons with ill-
ness or disability. Under these programs, local areas on aging are funded to develop
support systems covering information about services; referral for services; coun-
seling, support groups, and training for caregivers; respite care; and supplemental
services, such as home care.
A recent study profiled the experience of all 50 states and the District of Columbia
since the passage of the NFCSP. The report shows that only one in three states has
begun providing support to caregivers of older people as a result of federal funds
provided through the NFCSP. Second, less than half of the programs in this study
uniformly assess caregiver needs. Rather, services are designed based on the needs
of the ill or disabled person. Third, the study found wide variation in program de-
sign and interpretation among the states, leading to a lack of consistency in the
services provided. Fourth, respite was the service strategy most commonly offered
to caregivers. The top barriers to coordinating caregiver support programs with other
programs in the states are differing eligibility requirements and service complex-
ity and fragmentation. This leads to unevenness in services and service options for
family caregivers. The major lesson learned by the states in providing family care-
giver support is that “one size does not fit all”—so programs should increase the
choices that families have so they can tailor available benefits to meet their specific
needs (Feinberg and Newman 2004). Although this legislation was not specifically
designed for families of cancer patients, some caregivers might be eligible for ser-
vices if their loved ones are deemed to be eligible, i.e., older and with an illness or
disability.
Another piece of legislation that affects family caregivers is the Family and Med-
ical Leave Act of 1993 (FMLA). The FMLA allows leave for employees and their
family members for serious medical conditions, while maintaining their employ-
ment status. However, the FMLA provides no services or resources for caregivers,
and caregivers are not paid by their employers during the leave.
How Can Information Be Disseminated from Centers

of Excellence into the Community?
Most of the published, controlled studies of caregiver interventions have taken place
in university settings or centers of excellence and are likely to be considerably more
intensive and expensive than caregiver support groups that are available in the com-
munity. Participation in these programs may be limited by geographical location,
inconvenience, and lack of transportation. Innovative programs have designed mod-
els of collaboration, using the resources of the university settings in combination with
the local expertise of community centers, senior centers, and social service agen-
cies. This approach should be considered by funders, policy makers, and program
planners.
How Can We Measure On-Line Forms of Education, Counseling

and Skill-Building?
Increasingly, patients, and families are turning to the Internet to gather information on
medical issues, communicate with others in similar situations, and identify resources.
Touchscreen interactive information systems, live webcasts, on-line support
groups, telephone interventions, and other innovations provide convenience, con-
fidentiality, and real-time assistance to caregivers who cannot leave their homes.
Recognizing this growing trend, valid measurements to evaluate the effectiveness of
these programs should be developed.
98 M. Glajchen
How Can We Replicate Skill-Building Programs?
In order to replicate meaningful interventions to help caregivers cope with the stress
of the caregiving experience, programs must be described thoroughly. Too often,
the specific content and procedural details of interventions are described in minimal
detail, making it difficult to understand what was done. In addition, such programs
must be made more accessible to all caregivers by increasing their cultural sensitiv-
ity, providing them free of charge, and making them available outside of work to
accommodate working caregivers.
If the major unmet needs for cancer patients and caregivers are concrete in nature (trans-
portation = 62%, home care = 55%, financial help = 52%), why are there so few programs
to address these needs?
Despite the substantial proportion of patients reporting the need for help with practical
needs, few organizations currently provide this type of assistance (Shelby et al. 2002).
As the use of home care for cancer patients increases, a greater demand for practical
assistance will occur. Research should be conducted to demonstrate that investing
the time and resources to assist families with these needs will lead to demonstrably
better patient and caregiver outcomes at lower costs overall.
Conclusions
In conclusion, designing and testing caregiver interventions is a daunting task and

abounds with challenges. Over the past 20 years, we have gained a solid foundation
for developing effective programs as several studies have identified the needs of
caregivers of patients with cancer. Less is known, however, about the effectiveness
of caregiver intervention programs aimed at addressing caregivers’ needs. It is time
for the research focus to evolve from providing descriptions of clinical supportive
efforts to providing more scientific evaluations of controlled intervention studies. To
that end, it is safe to conclude that we have come a long way, and have a long way
to go.
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Chapter 6
What Professionals in Healthcare Can Do:
Family Caregivers as Members
of the Treatment Team
Walter F. Baile, Phyddy Tacchi and Joann Aaron
Changes in healthcare delivery in the United States have left their mark on oncology
services, the most significant being the shift in patient care from inpatient to outpatient
and ambulatory settings. As a result, the family and other caregivers must now assume
an expanded role in providing assistance for cancer patients especially at home (Given
et al. 2001; Glajhen 2004; Northouse and Northouse 1987).
Evidence suggests that altered family roles and the burden placed on family care-
givers could negatively affect the quality of life of the patients with cancer and their
caregivers, particularly during advanced stages of the disease (Grunfeld et al. 2004;
Pasacreta et al. 2000). Professional care providers of patients with cancer are increas-
ingly challenged to respond by evaluating the patient’s support system, and assuming
the role of consultant, manager, or even counselor for families, while guiding the
patient and caregiver through treatment (Northouse 2005).
Promoting Family Involvement and Functioning:

Essential Concepts
The Family as a Resource
Cancer is not only a physical illness, its effect on the dynamics of family functioning
is considerable (Isaksen et al. 2003). The family must not only process the sudden
W. F. Baile ()
Department of Behavioral Science, M.D. Anderson Cancer Center,
The University of Texas, 1515 Holocombe Blvd, Houston, TX 77030-1402, USA
P. Tacchi
Department of Psychiatry, M.D. Anderson Cancer Center,
The University of Texas, 1515 Holocombe Blvd, Houston, TX 77030, USA
J. Aaron
Department of Community Oncology, M.D. Anderson Cancer Center,
The University of Texas, 1515 Holocombe Blvd, Houston, TX 77030, USA
104 W. F. Baile et al.
impact of the cancer diagnosis but make an ongoing adjustment to the slow-motion
movement of the treatment process (Gray-Price and Szczesny 1985) which for some
cancers now are likely to last for years (Tummala and Maguire 2005). Also, the
declining death rates for cancer suggest that it will be useful in the future to view
cancer as a chronic illness rather than as an acute one (Edwards et al. 2005; Jacobs
(Chap. 8)). Speice et al. (2000) delineated how the family can be an invaluable
resource for the cancer patient and treatment team. Family members can function as
an extra set of ears for patients who often find it difficult to recall information and
store details when they are trying to deal with the impact of the cancer diagnosis and
treatment. Family members through their presence, concrete assistance and listening
and empathic connection can serve as sources of emotional support for the patient
so that cancer becomes a “we” experience. Family members are also resources for
patients when critical decisions about treatment have to be made and some cultures
rely in a model of family “shared decision-making” to make choices about treatments
(Blackhall et al. 1995).
Since the late 1970s, the family along with the patient has been considered as
“a unit of treatment.” This means that promoting optimal care of patients requires
that the needs of family members also be identified and addressed (Speice et al.
2000; Quinn and Herndon 1986). However, as Pasacreta et al. (2000) conclude from
their study of perceived needs of 83 family caregivers, family members may feel
inadequately prepared to provide care for their sick relatives in the home because of
a number of informational and skill deficits (Pasacreta et al. 2000).
Improved cancer care that embraces family members as caregivers rests upon the
treatment team understanding the resources that the family brings, empowering the
family to be part of the treatment team and conveying information. Fitch (2000) notes
that addressing the concerns of the caregiver and supporting the family through the
crisis of cancer necessitates the use of good communication and interpersonal skills
(Baile and Aaron 2005). Training in this area has generally not been included as part
of the curriculum in medical school or postgraduate medical programs. On the other
hand, poor communication between the treatment team, patient, and family has been
shown to cause significant distress in cancer patients and their families (Thomas and
Morris 2002).
It is important to recognize the stresses on the family. First the financial impact
of cancer is far reaching and includes costs beyond what many medical insurance
plans cover (Brown et al. 2001). This is especially true today when many employers
are restricting health insurance coverage or are mandating employees to pay for the
increased costs of health care. Unemployed people under the age of 65, including
children, often have no access to health insurance and this is becoming an increasing
national crisis1 . Studies report that financial concerns are often the greatest burdens
faced by cancer caregivers (Brown et al. 2001; Siegel et al. 1991; Yun et al. 2005).
As new, expensive cancer treatments allow patients with complex medical prob-
lems to live longer, financial concerns expand exponentially to meet health needs
1
Even programs that do exist are undersubscribed. For example, in many states of the United
States, the Children’s Health Insurance Program (CHIP) provides health insurance for children at
an affordable cost and yet there is limited enrollment these health plans.
6 What Professionals in Healthcare Can Do 105
for medication, medical equipment, and extraneous necessities such as transporta-

tion, child care, home care services, extra or specific foods, and lost income and
wages (Hampton 2005; Shelby et al. 2002). Other stresses include demands such as
maintaining employment outside the home and competing family roles. Together,
accumulated stressors complicate and compromise the emotional and physical health
status of family caregivers. Family members are frequently concerned about their
abilities to balance the demands of care with other ongoing responsibilities and worry
what the immediate and long-term effects of dealing with cancer will be on their fu-
ture (Given et al. 2001). The increased responsibilities of the family in providing
short and long-term cancer care with limited support and insufficient medical train-
ing and the impact on the patient and family are critical challenges for clinicians
(Pasacreta et al. 2000; Lewis et al. 1989) and for social policy makers.
The Cancer Crisis and Family Structure
Despite treatment advances in the field of oncology, a diagnosis of cancer continues

to be perceived by many as an announcement of impending death, and one that
unconsciously signifies the mortality of the family unit. This perception can lead
to a state of acute crisis. Reviewing the literature, Mishel et al. (1984) found that
a cancer diagnosis produces a more alarming response than the diagnosis of other
diseases. Cancer creates anxiety, disequilibrium, and uncertainty leading to crisis. It
can disorganize social processes, daily functioning, and mental stability, producing
an adverse effect on the quality of life (Mills and Sullivan 1999). Few words can evoke
such an immediate, life-threatening reaction as the word “cancer.” A serious illness
can also lead to a crisis by heightening anxiety and the couple’s use of misinterpreted
interchanges, or by weakening restraints such as established routines, role identities,
or physical reserve. In the face of such a crisis, social and psychological interventions
can positively affect the quality of life of the patients with cancer and their families
(McMillan et al. 2006), and have even been thought to influence immune function
(Adler 2002).
Addressing Crises
An important goal of intervention can be to help the family maintain an equilibrium,

which takes into account the reality of the illness. When facing a stressful event such
as cancer that disrupts its homeostatic steady state restoring balance to a family can
minimize the emotional impact. As early as 1888, Henri-Lewis Le Chatelier, a French
industrial chemist, made observations on the nature of systems in equilibrium, which
may be applied to the relational balance in a family. He wrote, “any change in one
of the variables that determines the state of a system in equilibrium causes a shift in
the position of equilibrium in a direction that tends to counteract the change in the
variable under consideration” (Le Chatelier 1888, p. 786) so that the entire system
CANCER
Caregiver Professional
Tasks (Crisis)
Crisis) Tasks
Accepts role Establishes rapport
Advocates First and Assesses needs
Communicates Subsequent Defines roles
Supports Informs
Encounters Empowers
Strategizes
ALLIANCE
Extended Institutional
Family Resources
Community
Support
Services
OPTIMAL
CARE
Fig. 6.1 Therapeutic alliance
needs to shift until a new equilibrium is reached. For the family disequilibrium is
caused by the new energies required by the demands of cancer care. This threat can
lead to anxiety and disorganization that can occur in the family until a plan is adopted
to address the problem. Appropriate utilization of crisis intervention techniques by
the treatment team can return the individual or family in crisis to at least the precrisis
level of functioning (Gray-Price and Szczesny 1985). Four critical moments in the
cancer process have been defined. These are diagnosis, end of first treatment, first
recurrence, and transition to palliative care (Morris and Thomas 2001). It is at these
stages that the family is likely to experience crisis and reach out for help.
The Therapeutic Alliance
Following on the discussion of crisis intervention, the healthcare team could best
support the patient’s caregivers if it shifts from a perspective of the traditional patient–
doctor relationship, which views the role of the physician as diagnosing disease and
prescribing treatment, to embrace the concept of “therapeutic alliance” , which en-
compasses the patient, the treatment team, and the patient’s family (see Fig. 6.1). The
participants in a therapeutic alliance work together as a group with a shared purpose
of combining resources toward a common goal: curing the cancer and minimizing
its medical and psychosocial side effects (Engel 1983; Masera et al. 1998). This
therapeutic alliance functions by applying positive energies to counteract the neg-
ative forces elicited by the cancer experience. Morris and Thomas (2001) consider
Fig. 6.2 Components of the

therapeutic alliance with the Components of the Therapeutic
family
Alliance with the Family
Definition: a relationship in which parties
involved work collaboratively, joining
resources toward a common goal. The
essentials of this relationship are:
Mutual respect
Trust based on honesty and openness
Communication and information
sharing
Negotiation and problem-solving
“carerhood” as a process, rather than a fixed state, and one in which competing needs
vie for recognition. The findings of their study also suggest that carers must negotiate
and make legitimate their own position as the part of this complicated process.
The International Society of Pediatric Oncology (SIOP) Psychosocial Committee
has described the essential character of a therapeutic alliance between family and
staff as a two-way cooperative partnership in which each party in the alliance—
patient, family, healthcare staff—has particular obligations and responsibilities in
the therapeutic alliance (Masera et al. 1998; see Fig. 6.2). They include:
1. Mutual respect of the specific and different skills, experiences, and interests of
the patient, family, and staff. Mutual respect between physicians and healthcare
team members and patients and caregivers and their particular value systems and
skills is implicit in a therapeutic alliance. While the medical staff has expertise
in the disease and its treatment, parents and family members are experts on
their needs and concerns. They should describe their own role in medical care,
identify important contact persons within the medical team, and elicit patient and
family members concerns. Communicating the collaborative nature of the cancer
treatment and encouraging family members to verbalize their concerns will signal
the importance of the communication channel with the family.
2. Communication and information sharing. Providing information to patients and
their caregivers can enhance coping (Jefford and Tattersall 2002). Information is
in itself an organizing tool in that the amorphousness, the unknown, and common
fears associated with a cancer diagnosis are given a voice and thus a form with
known boundaries. The magnitude of free-floating emotions is compressed into
words, which can limit terror and contain fantasies which may lead to helplessness
and despair, impart a degree of control to the patient and family, and lessen the
impact of the cancer crisis. Information about cancer treatment can provide a
cognitive “road map” (Back et al. 2005), which like any map, points the way,
provides signposts, and structures time and distance to travel allowing the family
to anticipate resources that will be needed along the treatment trajectory.
Fig. 6.3 Five steps in

establishing the therapeutic
alliance Five Steps in Establishing
the Therapeutic Alliance
P Determine patient Preferences for caregiver

involvement
E Engage caregiver
R Establish caregiver Role and Readiness
K Provide Knowledge and information
S Support and Strategize
The role of family members in an alliance is also to ensure that free communication
exists between family members; to seek information from the staff; to treat the
staff with respect for their expertise and skills; to provide relevant information
for medical and psychosocial intervention. Families as a group and the healthcare
team as a group assume the mutual obligation in a therapeutic alliance to dedicate
time, energy, and creativity to collaborate.
3. Negotiation and problem solving. Negotiation is a central skill in establishing
and maintaining a therapeutic alliance. Through negotiation, collaborations are
developed, conflicts are resolved, and the needs and perspectives of all the parties
involved in decision-making are incorporated, although integrating the complex
needs of the patient and family members with the skills and practice styles of the
oncology team can be difficult at times (Speice et al. 2000). Negotiation when
successful leads to increased confidence, trust, and a sense of partnership.
Establishing the Therapeutic Alliance with Caregivers—P E R K S
The process of establishing a therapeutic alliance is facilitated by three principles of

crisis theory, which stems from observations of the behavior of individuals in crisis
(Caplan 1970). It states that they are likely to: (a) reach out to others for help; (b) to
accept suggestions from others to help overcome the crisis; and (c) form strong bonds
with those providing assistance (see Fig. 6.3). Professional caregivers, by promoting
trust, collaboration, and confidence, by providing expert advice and by reinforcing
the inherent coping strengths of the patient and family are able to positively influence
their coping and enhance cooperation with treatment. We propose the following
strategies for establishing a therapeutic alliance in the context of cancer care. The
steps are signaled by the acronym PERKS—Preferences, Engagement, Readiness
for role, Knowledge and Information, and Strategy and Summary. They are outlined
below.
P Determine Patient Preferences for Caregiver Involvement Many patients want

the company of a close friend or family member when their diagnosis is presented.
However, some patients prefer to be alone with their physician at that time. The safest
path to addressing these preferences is to ask the patient beforehand who should be in
attendance when the diagnosis (Sardell and Trierweiler 1993) and ensuing treatment
approaches are discussed. This approach also resolves the issue of confidentiality
of information. This may require a brief visit with the patient alone at the time of
the office visit. An office nurse can early determine this during the time of triage by
asking. . . ., “I see you came with several family members today. Whom would you
like to be present when we talk about your illness and the treatment plan?”
E Engage the Caregiver Many consultations take place in environments that are not
conducive to the development of a “connexial” relationship with the patient and fam-
ily (Matthews et al. 1993) and are marred by disruptions from telephone calls, other
healthcare professionals entering the room, and insufficient privacy (Fallowfield and
Jenkins 1999; Parker et al. 2001). In a study conducted by Sardell and Trierweiler
(1993), cancer patients surveyed indicated that a cancer diagnosis should be disclosed
in a manner suggesting personal individuality, intimacy, and privacy. Patients want to
receive a diagnosis in a face-to-face encounter. Moreover, patients want to have some
prior connection with the physician who presents the diagnosis. In most cases, this
refers to the primary or family physician (Parker et al. 2001; Sardell and Trierweiler
1993). Creating an hospitable environment is essential (Parker et al. 2001) and can be
accomplished by choosing a suitable place with quiet and privacy for discussions and
encouraging patients who wish to include family members at appointments. It is also
helpful for the treatment team to inquire about family members’ names and to note
details about their relationship with the patient. Attentive listening to the family’s
concerns is a corollary that is key to providing useful assistance and engaging the
caregiver(s). In addition, it is important to identify the most pressing needs, family’s
priorities, obstacles needing navigation, and potentially available resources. A useful
approach is to offer information, providing an environment that invites questions as
caregivers face new issues and are ready to absorb new information (Lunney 2000).
R Establish Caregiver Role and Readiness The caregiving role is based on the
demands of the caregiving situation. These include:
Direct Care—Care carried out directly with the patient: Administration of med-
ications; Titrating doses of medication; Observing for side effects; Observing for
complications; Keeping records of symptoms and medications; Reporting untoward
effects and treatment effectiveness; Determining need for Medication adjustments;
Providing wound care and dressings; Bathing; Dressing; Assistance with mobility,
transportation, child care; Emotional support.
Indirect Care—Care carried out on behalf of the patient: Obtaining medica-
tions; Scheduling appointments and coordinating care; Assistance with medical bills
and general finances; Observing for side effects; Supervising care; Standing by
(Vigilance).
Important information to establish for the caregiver role and readiness for that role
is—knowledge about the disease and treatment as well as symptom management;
expected treatment trajectory; financial management; challenges such as dealing

with patient mobility (Given et al. 2001). Indirect care: Providing support to the
patient through listening, validating emotions, providing suggestions, and relating
to the patient with positive regard.
It is impractical to expect that caregivers will have a total picture of what may
be required of them and unrealistic to expect that families can meet all caregiver
obligations. Hopefully, however, many will have been in a caregiver role previously
so some of the aspects of the role will be familiar. Those who have not will need
more extensive support.
Barriers to caregiving should be openly identified and discussed so that a proactive
approach can be adopted. Lack of appropriate caregivers multiply other demands,
as caregivers, etc., will identify problems and obstacles in an area where solutions
need to be worked on.
K Provide Knowledge and Information A cancer diagnosis and ensuing treatment
phases are highly traumatic. The person is catapulted into an unfamiliar learning en-
vironment, where there is little or no time to emotionally or psychologically accept
the diagnosis of a life-threatening illness before being asked to consider treatment
options and deal with the physical impact of the chosen treatment. This rapid succes-
sion of events can diminish the individual’s sense of mastery and induce feelings of
powerlessness and helplessness. The negative spiral of events threatens the person’s
whole psychosocial well-being. These points emphasize the crisis state that many
patients and their families are in at such a time and demonstrate the need for support,
including supplying appropriate information to the patient and family (Mills and Sul-
livan 1999). As previously mentioned, there is a growing awareness regarding the
importance of receiving information for family/caregivers and patients alike. Mills
and Sullivan point out the various functions of information to patients and family care-
givers, such as helping them gain control, reducing anxiety, improving compliance,
creating realistic expectations, promoting self-care and participation, generating feel-
ings of safety and security. The literature consistently highlights the need to receive
information about the dimensions of care, such as information and assistance regard-
ing the actual disease; physical care; comfort measures; what symptoms to expect,
their causes, and how to manage them; treatment regimens; expectations for future
care; patients’ emotional responses; household management procedures; finances;
and community resources (Fitch 2000; Given et al. 2001; Mossman et al. 1999).
Symptom control is a particular area of concern and can become a major struggle
for patients, particularly those with advanced disease, and their family caregivers.
Pain management often becomes a pervasive and intractable problem for family care-
givers, contributing to care demands as well as to their own distress. Thus, healthcare
professionals need to provide caregivers with information about how to manage pa-
tients’ physical and emotional symptoms within the context of the caregiver’s level
of knowledge and ability to identify symptoms (Given et al. 2001).
Various forms of information have been assessed and many have been found to
be useful. However, while verbal information is often seen as the cornerstone of
information giving, an inherent problem is that most of the information available
involves novel concepts and often frightening language for patients. Supplemental
written information has the benefit that if patients are too anxious at diagnosis or
consultation to retain the information they are given, the written data serve as a ref-
erence that can be used to refresh their memories. Furthermore, written information
may be particularly beneficial to patients in the current milieu of clinical practice,
when shorter hospital stays reduce the amount of time doctors and nurses have to
spend discussing concerns and providing salient facts (Mills and Sullivan 1999).
Recent studies show that allowing caregivers to audiotape clinical encounters or pro-
viding them with follow-up letters summarizing the essentials for the encounters, be
a unique source of information as patients and caregivers can refer to it as necessary
and share it with all potential caregivers (Hack et al. 2003). Video representations
of caregiver experiences in cancer care can be another helpful intervention (Kettler
and Baile 2005).
S Support and Strategize The therapeutic alliance is an important factor in providing
support for family caregivers. In this discussion, the term “support” describes meeting
family caregivers’ needs for assistance in providing optimal care to the patient with
cancer. As such, the focus is not only on the disease and treatment, but also on the
interplay between how the disease affects the patient and the demands it imposes on
the caregiver. Support from healthcare professionals, family, and friends can help
family caregivers enhance their resiliency and expand their capacities to respond
to care demands. The goals of support should be to enable family caregivers to
maintain the patient’s comfort and enhance the patient’s quality of life, and to prevent
or minimize unnecessary caregiver fatigue and distress. Generally, support should
balance the psychosocial needs of the caregiver and promote the caregiver’s physical
and emotional well-being so that he or she can more effectively attend to the physical
and emotional needs of the patient with cancer (Given et al. 2001). Psychoeducational
interventions are an important source of support and may be easily carried out by
the oncology team. Maintaining an attitude of hopefulness, encouraging spouses
or family members to accompany patients to visits, stressing the importance of
communication among family members, and underlining the important role that
family support has in patient recovery can be effective strategies (Dorval et al. 2005).
Caregivers of terminally ill cancer patients have diverse needs. Some need help and
reassurance making difficult decisions; others have problems communicating with
the patient or with other family members. All caregivers must learn to cope with
complex and sometimes conflicting emotional responses, including fear, guilt, and
anger. Many require assistance securing appropriate healthcare services or eliciting
needed personal and social support (Lev 1985; Nijboer et al. 2001). In addition to
these functions, caregivers must navigate unfamiliar legal and business matters, and,
ultimately, may have to make funeral arrangements (Lunney 2000).
Caregivers generally undergo adjustment difficulties and great stress from the
caregiving demands placed on them. The results of elevated stress are depression,
anxiety, a feeling of being burdened, role conflict, uncertainty, fatigue, insomnia,
decline in physical health, lack of exercise, poor nutrition, use of medications, and
morbidity (Given et al. 2001; Thomas and Morris 2002). Changes in the degree
of distress and adjustment problems tend to become more intense for the caregiver
as the patient’s condition deteriorates. At such times, a serious assessment of the
family caregiver’s support needs should be documented and the capacity to care
for the patient evaluated. Appropriate support from healthcare providers and others
may help families to prioritize and manage patients’ problems, while at the same
time lowering the burdens associated with the uncertainty of caring. If families can
acknowledge the value of their care, their sense of burden is likely to be lessened
(Engel 1983; Given et al. 2001).
Attention should be paid to the quality of life of caregivers. Caregivers com-
monly perceive that they do not have time to breathe, let alone do anything else for
themselves. It is essential to help them understand that they must make time to care
for themselves, even in small ways. Helping caregivers establish a plan of care for
themselves is as important as organizing care plans for patients (Lunney 2000) and
without such a plan, it will be difficult to act in the role of caregiver in a state of
readiness.
The oncology healthcare team can improve patient outcomes and reduce care-
givers’ anxiety, depression, and sense of frustration by dealing with practical
exigencies. These can include identifying patients’ home care needs, plans of care
specific to each patient and family, and instructing family members about how to im-
plement the parameters of the plan. Also, the team must assume that family members’
capacities to provide care vary; these variations must be considered and interventions
tailored for each situation. The interventions designed by oncologists and delivered to
family caregivers should emphasize improving patient comfort and satisfaction, re-
ducing unnecessary hospitalizations, and managing patient care across the advanced
disease trajectory (Given et al. 2001).
When trying to reestablish equilibrium to families in cancer crisis, a useful ap-
proach is to make mountains manageable for today, tonight, or this week (Rickel
1987). Once the crisis has eased and the patient has returned to a precrisis level of
functioning, referrals may allow the patient to work through present or other major
problems in a more directed manner. In planning with a patient in crisis, it is help-
ful for the treatment team to: (1) list the problems as they see them; (2) have the
patient/family list their problems as they see them; and (3) have each group place
them into three categories. The patient/family will place them into: (1) Things I can
change soon; (2) Things I may be able to change in time; and (3) Things I cannot
change. The treatment team will do the same, however, the categories will be: (1)
Life-threatening; (2) I can assist; and (3) I can get assistance (Rickel 1987).
Outcomes of a Therapeutic Alliance
The therapeutic benefit of the relationship with the family becomes more obvious
when the clinical team is alone to conceptualize and embrace it as a journey in which
they provide “safe passage.” Physicians can nurture and encourage a fighting spirit in
patients and encourage patients and caregivers to take control of their situation and to
accept some degree of personal responsibility for the healing process. For example,
physicians can suggest to patients that each day they survive allows them to take
advantage of new developments in treatment. Other patients may want to actively

participate in their healing through supportive activities such as exercise programs,
special diets, visualization, or psychotherapy (Sardell and Trierweiler 1993).
The benefits of the supportive nature and hopeful spirit of the therapeutic alliance
are:
• Reduction of the distress in handling uncertainty.
• Providing accurate information.
• Increased compliance with treatment.
• Improved satisfaction with care.
• Enhanced psychological adjustment.
• Receipt of clearly understood informed consent.
• Improved decision-making.
Involvement of Caregivers in the Treatment Team: Current

Status and Future Lines of Investigation
Practice Now
Caregivers are variably involved in patient care and face limitations imposed by time
and resources. Areas of concern are in training professionals and in the treatment
team in allying with and empowering patients and families.
• Limitations most often reported by cancer patients and caregivers include those
related to personal adjustment to illness, psychosocial support, transportation
issues, financial assistance, home care, medical information (Shelby et al. 2002).
• As a first step in developing a care plan with family members, the treatment
team might benefit from completing a self-assessment of their own personal and
professional boundaries, as well as areas of strength and limitations in working
with families (Speice et al. 2000).
Practice Needs for the Future
As cancer becomes a more chronic disease and the caregiver burden may extend
well beyond the acute phase of the illness. Thus, the future practice of oncology will
likely prioritize engaging/partnering with caregivers. An especially interesting aspect
of family involvement revolves around managing difficult family dynamics. These
can be discussed in professional team meetings, however, will require psychosocial
specialists trained in this area. A particular challenge facing oncology clinicians
is to understand how much a presenting problem is due to a troubled individual
or to a troubled relationship (Peteet and Greenberg 1995). Various behaviors can
provide clues to the existence of a high-risk family, including denial, anger, guilt,
detachment, emotional and/or geographical distance, and demanding to know why

certain services have not been provided, why certain procedures have been used, or
staff overly bonding with the family (Welch-McCaffrey 1988).
For a therapeutic alliance to be established, families should be evaluated for func-
tional versus dysfunctional characteristics. The emotional system of a functional
family encourages independence, promotes self-esteem, exhibits positive resolution
of conflicts, and promotes the ability to adapt to change. Functional families have
relationships that foster emotional maturity where the individuals are able to sepa-
rate thought from feelings and demonstrate a sense of separateness among family
members. In functional families, differences of opinions are encouraged and there
are mutual problem-solving behaviors that generate solutions to problems. Family
members are flexible in relation to each other.
In contrast, dysfunctional families encourage dependence, identify one person as
the problem or patient, experience negative conflict resolution, and display a rigid
use of repetitive and ineffective coping. Dysfunctional families are characterized by
a lack of differentiation among family members. Emotional immaturity is fostered,
feelings and thoughts are enmeshed, a sense of constricting fusion among family
members where differences of opinion are not acceptable exists, and family members
demonstrate an inability to resolve problems through alternative solutions (Heiney
1988). In the dysfunctional family, three patterns signal that individuals are having
difficulty with conflict resolution and problem solving, further complicating and
intensifying the crisis of cancer. These are excessive marital conflict, overadequate
compensation and inadequate reciprocity of behaviors, and the process of projection
of emotions whereby one party displaces his/her emotional interpretation of events
onto another party. When there is excessive marital conflict and their child is ill,
parents cannot resolve issues or problems. Arguments are repeated over and over
and, despite their historic ineffectiveness, the same solutions are used time after time
in an attempt to resolve recurring problems. This pattern can escalate into abuse. In
relationships marked by an over-adequate/inadequate reciprocal pattern, one spouse
functions at the expense of the other or depletes energy from the other (Heiney 1988).
For optimal and efficacious treatment, the members of the therapeutic alliance should
be aware of these debilitating mechanisms and devise a plan to cope with their effects.
Studies of family functioning and illness have used theoretically-based instru-
ments such as the Moos Family Environmental Scale (FES), the Circomplex Model of
Family Functioning (FACES), the Family Paradigm, the MacMaster Family Assess-
ment Device (FAD), and other family measures. However, the degree of correlation
among measures remains uncertain (Ell 1996). This is an excellent area for future
investigation.
Problem-solving therapy (PST) has been documented as an effective way to assist
patients and families in coping with cancer. It has been shown to reduce distress and
to increase a sense of control among persons with cancer and their family members
(Scott et al. 2004). Unfortunately, PST is not widely available because counselors
are not routinely prepared to offer this specialized education and are not routinely
employed in medical settings. In addition, many patients with cancer and their fam-
ilies are reluctant to seek out the services of counselors or therapists as a way to
cope with their problems. Therefore, while PST is highly effective, its widespread
adoption as an education source is limited by pragmatic considerations. Fortunately,
key elements of its approach are educational in nature and can be learned, adapted,
and added to the array of useful psychoeducational programs for patients with cancer
and their families (Bucher et al. 2001).
The process of transforming PST into an educational model began in 1992. The
content for the skills-building program was derived from what counselors teach in
one-on-one PST counseling sessions. Their six-step problem-solving approach was
condensed into four topical areas and relabeled as the COPE model of problem solv-
ing. COPE stands for the application of: creativity (brainstorming of ideas to create a
plan to solve a problem or to gather more information about the problem), optimism
(feeling hopeful that one can succeed in solving the selected problem), planning (cre-
ating a systematic plan to attack the problem and also prevent its reoccurrence), and
expert information (gathering information from written sources and expert profes-
sionals). Initial field-testing of the COPE educational adaptation of PST for families
affected by cancer was funded by the Pennsylvania Department of Health and was
conducted primarily in community settings such as churches. Program evaluation
revealed that patients, families, and interested community members were receptive
to the intervention.
Problem-solving education is a new form of psychoeducational education. The
evaluation of its use with families affected by advanced cancer suggests that the
education is well received by patients and their families and can be delivered in
busy clinic settings. Experimental and control group comparisons are needed to test
its effects rigorously; however, there is a growing body of literature that suggests
that problem-solving education is an effective psychosocial intervention. Patients
with advanced cancer and particularly their caregivers may benefit from such an
educational approach (Bucher et al. 2001).
Education/Training Now
Progress in this area is variable with some disciplines having formal training, e.g.,
social work family assessment, nurse biopsychosocial model of care, and physicians
learning informally through experience. Limitations that need to be addressed are:
• Communication—Communication is essential for efficacious therapeutic al-
liances and all aspects of interaction in the cancer setting (Baile and Aaron 2005;
Parker et al. 2001). Communication should be viewed as a core clinical skill that
merits a considerable investment of time and resources in training. Unfortunately,
few oncologists, nurses, or medical students receive adequate formal education in
communication skills using methods likely to promote change, confidence, and
competence (Baile et al. 2000; Fallowfield and Jenkins 1999; Maguire et al. 1986).
Effective communication during a consultation influences the range and number
of symptoms elicited, permits a more precise assessment of the efficacy of ther-

apy, affects adherence to treatment recommendations, impacts the patient’s and
family’s emotional and physical well-being, and contributes to both patient and
healthcare satisfaction (Fallowfield and Jenkins 1999; Garg et al. 1997; Maguire
et al. 1986). Good communication is also associated with many important and
meaningful health outcomes, including adherence to drug regimens and diets,
pain control, resolution of physical and functional symptoms, improvements to
physiological measures such as control of blood sugar and hypertension, and good
psychological functioning of patients. Trust in the doctor is a primary motivat-
ing factor in the acceptance of clinical trial participation (Albrecht et al. 2003;
Fallowfield and Jenkins 1999).
• Burn-out—Clinicians specializing in cancer acknowledge that insufficient train-
ing in communication and management skills is a major factor contributing to
their stress, lack of job satisfaction, and emotional burnout (Fallowfield and Jenk-
ins 1999). Enhanced communication among members of the treatment team may
provide some buffer against burnout (Fallowfield 2005).
Education/Training in the Future
Paradoxically, institutional changes are occurring at a time when the needs of care-
givers are becoming more complex. This may become increasingly burdensome to
the family, treatment team, and society. Education and training are needed in the
aspects specific to the illness of cancer and caregiver/family concerns in these areas.
Wong et al. (2002) found the management of common symptoms, including pain,
nausea, weakness, and fatigue, and the types of services that were available to fa-
cilitate the care of the patients at home were the major concerns of patients with
advanced cancer and their families. There is a need for education and support in this
realm for caregivers. In light of dramatic changes occurring in healthcare delivery
throughout the country, innovative strategies for disseminating information and sup-
port to caregivers and the professionals that assist them are critically needed so that
caregiver education and support will ultimately become a routine standard of care
(Pasacreta et al. 2000).
Guidelines for Recognition and Treatment of Burnout As Spinetta et al. (2000) note,
health care professionals are increasingly aware of the problem of burnout and are
concerned with its impact on the healthcare team. Burnout can ultimately affect the
care provided to the patient and family by creating indifference, emotional exhaus-
tion, and a sense of professional and personal failure. They provide useful suggestions
for identifying and addressing factors in the work environment and personal issues
which are frequently echoed by experts in dealing with stress-related symptoms and
personal renewal (Shanafelt 2005; Shanafelt et al. 2006).
• Training in basic and advanced communication skills. It has been pointed out
how vital communication is for treatment to be biopsychosocially valid (Parker
et al. 2001). Good communication skills are not only essential for forging a help-
ful alliance between the patient, the family caregiver, and the treatment team,
they are equally as necessary for the treatment team to be effective, with the pa-
tient and with each other (Frankel and Steven 2001). A problem within oncology
that impacts care in part concerns the quality of the communication within the
multidisciplinary team. Poor communication between different specialists and
departments can add to the confusion about the diagnosis, test results, and man-
agement (Fallowfield and Jenkins 1999; Garg et al. 1997; Maguire et al. 1986).
In addition, communication is a vital conduit for providing support and enhanc-
ing family communication. There is convincing evidence that family members
repeatedly express a need for information from health professionals, however,
experience difficulty in obtaining the information (Keller 2001). Lack of infor-
mation not only deprives the family of an important coping resource, but also
contributes to family stress, and may lead to family conflict and misguided pa-
tient support (Ell 1996). Clearly research in this area is needed as is research in
how to improve the communication skills of patients, particularly in interviews
with the treatment team (Cegala et al. 2000).
• Training in conducting family interviews. In general, patients want physicians to
adopt an attitude of confident openness and to act as supportive and encouraging
coaches rather than as detached clinicians or consoling caretakers (Sardell and Tri-
erweiler 1993). For patients, the physician’s ability to maintain an attitude of hope
and confidence in the face of the grim facts of cancer is a critical aspect of diag-
nostic disclosure and one warranting further study (Sardell and Trierweiler 1993).
• Lipkin (1996) delineates useful suggestions for the order and structural elements
of an interview, which would likely be useful if widely adopted. These are (1)
preparing oneself to listen and attend, (2) preparing the environment, (3) greeting
the patient, (4) opening with introduction of self and purpose, (5) generation
of hypotheses, (6) surveying problems, (7) picking a priority problem, (8)
developing the narrative thread, (9) training the patient, (10) detailing the story
of the illness, (11) use of safety net question lists, (12) the physical examination,
(13) summarizing, (14) planning the next steps, and (15) closing. It would be
interesting to design a study to assess the effects of this method.
• A physician’s appropriate physical contact with the patient (e.g., holding a hand,
a pat on the shoulder, a hug) goes a long way toward reducing the feeling of being
emotionally and physically devalued as a consequence of the cancer. Touch is a
powerful communicator and empathic gesture. Moreover, a physician’s careful
use of light humor demonstrates that solemnity is not the only way to get through
life’s catastrophes and that one can take a cognitive leap in the face of disaster
and engage humor as an ally in the cancer war. Studies have shown that laughter
has a healing benefit. Finally, patients reported greater hope when they were able
to talk with their physicians as partners in the fight and as confidants to whom
they could relate their feelings (Sardell and Trierweiler 1993).
Research Now
Devising efficacious strategies for promoting caregiver involvement requires ongoing

research into the areas of social support; provision of information; study design;
relationship between age, place in the family, and gender on the caregiving role; and
other pertinent areas.
• Thus far, research in promoting family involvement has focused mostly on in-
creasing professional caregivers’ ability to detect family caregiver distress. Some
promising intervention studies to promote caregiver involvement in patient care
include a randomized controlled trial of a prompt list, which helped advanced
cancer patients and their caregivers ask questions about prognosis and end of life
care (Clayton et al. 2007) and one of the several studies using audiotapes of clin-
ical encounters to help families and patients discuss information about their visit
(Ong et al. 2000). Some intervention studies have been conducted. While there
is a substantial body of literature dealing with family caregiver issues, serious
limitations exist, both in the negative as well as positive aspects of caring for a
loved one.
Research in the Future
• There is limited empirical evidence documenting the efficacy of standardized in-

tervention strategies specifically for cancer caregivers (Pasacreta et al. 2000). This
would be a useful line of investigation, including defining windows of opportu-
nity for specific interventions to be used during each phase of the cancer care
trajectory.
• Most research reflects family caregivers’ abilities to help patients through the
early phases of diagnosis and initial treatment and on the demands faced by
family caregivers at the end of the patients’ lives, few descriptions of the actual
care requirements for patients with chronic advanced and recurrent disease exist
(Given et al. 2001).
• The lack of methodological rigor of many of the previous caregiver intervention
studies and the equivocal results suggest that additional studies are warranted
(Toseland et al. 1995) with cogent study designs and statistical validation.
• The majority of the relatively few studies of family caregiver stress have particu-
larly underlined the considerable impact that cancer has on the dynamics of the
marital relationship (Ferrario et al. 2003). Studies to further examine this issue
and the effects on other family members such as the “well sibling” are warranted.
• Future research is necessary into how to prepare family caregivers for their roles
and in devising ongoing support programs for caregiver distress, especially in
view of evidence that healthcare practitioners often misunderstand the emotional
needs of the family. Findings that spouses experience social isolation, especially
when occupied with long-term caregiving activities underscores their potential
reduced access to social network support. Family caregivers, however, have been
shown to be reluctant to request assistance until their need becomes severe, such
as when the caregiver’s health declines (Ell 1996).
• Measures that capture the processes by which families give and take support await
further development. The most difficult assessments will involve attempts to ex-
amine support and family processes over time, as during the chronic exacerbations
and remissions associated with chronic conditions (Ell 1996).
• An important area for future research is an increased understanding of how to
enhance family dynamics, how to refer distressed families, and how to handle
ethical issues such as confidentiality.
Policy Now
While the family is often recognized as being an essential component in patient care,
most guidelines for involving family members are informal and specific to individ-
ual institutions. An exception to this oversight is the SIOP guidelines (Masera et al.
1998) for creating a therapeutic alliance which serves as an excellent model for incor-
porating the family into the treatment team. Resources such as “Elder Care Online”
(http://www.ec-online.net), which is an online community for helping caregivers of
the elderly, are often resourced by members of the healthcare team, such as social
workers, however, may not be as well known by nurses or other members of the
medical team. In addition, the Joint Commission on Hospital Accreditation (2004)
encourages the assessment of the impact of the illness on the family, and this could
be expanded to specifically promote expansion of the patient care model to include
the family.
Policy in the Future
• Expand standards of care to emphasize caregiver involvement. Caregivers are

increasingly informally recognized as essential components of patient care, how-
ever, their needs are regarded as secondary to those of patients, who remain the
primary users of health and social care. However, some ambiguity about whether
caregivers are providers or users of services has been noted in the policy literature
(Morris and Thomas 2001). Prior to the 1980s, caregivers in cancer were little-
remarked providers of assistance to the patient, generally subsumed under the
heading of “family,” however, in their incipient role as users of services, they have
become potential “clients” and need to be evaluated for levels of psychological
distress (Morris and Thomas 2001).
• One of the important reasons for the lack of progress in policy development and
service implementation has been the paucity of relevant data about the patterns
of supportive caregiver needs over time and the resultant utilization of services
(Fitch 2000).
• Establish guidelines and pathways for health professionals providing cancer care
in how to provide caregivers with assistance.
• Involve public/professional organizations, e.g., National Cancer Institute, Amer-
ican Society of Clinical Oncology, Oncology Nursing Association, National
Association of Oncology Social Workers, National and International Societies
of Psychooncology, to participate in training, policy, and advocacy.
• Liaison with patient advocacy groups to lobby for caregiver issues such as em-
powering the employed caregiver by identifying changes that can be made in
employment law in addition to the federal Family and Medical Leave Act of 1993
(FMLA).
• Establish statement of cancer caregiver rights and responsibilities, e.g., institu-
tional mission statements.
• The argument that future social support research should be conducted from a
family systems perspective is particularly compelling because it expands a nar-
row focus on the patient to include examination of the primary caregivers as well
as the social interactions that characterize day-to-day coping within families deal-
ing with illness. There is a need for longitudinal studies of support over time (Ell
1996). If support groups or other forms of grafted support such as use of lay vol-
unteers to meet with patients serve as an adequate substitute for or enhance family
support is unknown. If, and in what ways, traditional counseling approaches is
effective for helping families, particularly the spouse, is worthy of future studies
(Ell 1996).
• Caregiving has traditionally been viewed as a woman’s responsibility, and the
investigators hypothesized that men would have more difficulty in the caregiving
role than women. The relation between gender and the caregiving role needs to
be addressed in future research (Pasacreta et al. 2000).
• The focus on shared medical decision-making and the greater demands placed
on caregivers providing home care has increased the need for treatment-related
cancer information (Shelby et al. 2002). A preponderance of the literature re-
lated to caregiving and cancer focuses on the incredible importance that being
appropriately informed along the way is to cancer patients and their families and
continued research is necessary to monitor and answer this need.
Conclusions
The family is increasingly recognized as an important source of support for the pa-
tient and an extension of the medical team in assessing patient well-being, promoting
compliance, and advocating for the patient. The time is long past due for a proactive
approach that incorporates family caregivers in patient care. Activities for a care team
that embraces professional and family caregivers working together are multiple. They
encompass responding to the patient’s wishes and desires as the care recipient, sup-
porting the family’s strengths and responding to the needs of the family caregivers,
and assessing, and if necessary, realigning care team interventions. Development

of a therapeutic alliance that promotes the goals of care can best be accomplished
by addressing the multiple levels of needed action: research on evidence-based in-
terventions, research-based policy development, and implementation of caregiver
education programs and supports of known empirical value. Accomplishing these
steps requires parallel collaboration among clinicians as professional caregivers, care
facilities as care settings, family advocates as both family caregivers and public ad-
vocates, and policy makers as the guardians of public policy on caregiving issues to
bring about needed changes.
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Part II
Issues in Providing Direct Care
Chapter 7
Issues Faced by Family Caregivers in Providing
Appropriate Care for Cancer Patients with
Short-Term/Intermittent Care Needs
Robert Bergamini and Karrie Cummings Hendrickson
The diagnosis of cancer is a devastating event, both for individuals with cancer
and for their families. Providing necessary care for a loved one or friend can have
a substantial impact on both the physical and mental health of the caregiver. The
migration of cancer treatment from an inpatient to an outpatient setting has had
many benefits for the patient and family; however, at the same time, that change also
has resulted in a significant increase in the care responsibilities of the person with
cancer and for the caregiver (Given et al. 2001; Hayman et al. 2001; Weitzner et al.
2000). While much attention has been paid to the needs of the patient, there has been
less attention given to the needs of the caregiver. Lack of attention to the caregiver’s
needs may lead to complications that compromise the physical and mental health of
the caregiver, and can interfere with the healthcare of the person with cancer (Jensen
and Given 1991; Nijboer et al. 2000; Schumacher et al. 2000).
Following the diagnosis—and over the ensuing months and/or years—the respon-
sibilities thrust upon the caregiver include:
• Emotional support to the patient and participation in medical decision-making,
• Education and training in medical treatments,
• Insurance issues (many would say battles),
• Financial issues, including operation and maintenance of the household,
• Transportation,
• Coordination of care from multiple healthcare providers,
R. Bergamini ()
Unity Physician Hospital Organization, 607 S New Ballas Road,
St. Louis, MO 63141, USA
K. C. Hendrickson
Decision Support, Yale-New Haven Health System,
Yale University, 20 York St., New Haven, CT 06510, USA

128 R. Bergamini and K. C. Hendrickson
Patients’ characteristics
• Demographic factors
• Clinical factors
Family impact
• Requiring assistance Caregiver’s Quality of Life
• Major life change • Burden
• Inability to function • Disruptiveness
• Loss of savings • Positive adaptation
• Loss of income • Financial concerns
• Move to less expensive home • Others
• Delayed medical care
• Altered educational plans
Family members’ characteristics
• Demographic factors
• Comorbid disease
• Overall health status
Fig. 7.1 Conceptual research model for studying burdens and quality of life of family caregivers
of cancer patients (Yun et al. 2005)
• Assistance with activities of daily living (e.g., bathing), and

• Maintenance of the caregiver’s own life and needs (job, school, etc.), despite
significantly increased demands on the caregiver’s time.
Even for short-term or intermittent care needs, the caregiver will be challenged by
fatigue; conflicts with work or school; a sense of being overwhelmed by the volume
of tasks to be performed; doubts of personal skill, stamina, and knowledge; and issues
related to the caregiver’s own individual life (Chan and Chang 1999; Hardwick and
Lawson 1995; Laizner et al. 1993; Pasacreta et al. 2000). The magnitude of the
impact on a patient and family cannot be minimized.
Yun et al. (2005) present a useful and informative model that will guide the
discussion of caregiver experiences in this chapter (Fig. 7.1). They suggest that the
burdens associated with caregiving are inversely related to the quality of life of the
caregiver.
As the needs of the patient vary over time, the resultant demands and burdens
on the caregiver also change and their quality of life is affected. In this chapter, we
discuss the challenges caregivers encounter when managing the care of a person
with cancer in the home. We examine obstacles encountered by caregivers during
the phases of cancer (diagnosis, treatment and recovery, and disease progression and
terminal care), along with special concerns for caregivers of children with cancer
and young caregivers of adults with cancer. Finally, we review the current state and
future directions of healthcare education, research, and public policy with regard to
caregivers of people with cancer.
7 Issues Faced by Family Caregivers in Providing Appropriate Care for Cancer Patients . . . 129
Diagnosis
At the time of diagnosis—and for about 100 days afterward—the patient, primary
caregiver, and extended family are faced with a multifaceted crisis, which has been
called the “existential plight of cancer” (Raveis and Pretter 2005; Weisman and
Worden 1977). During this time, regardless of educational or professional back-
ground, the caregiver is thrust into an important supporting role, while at the same
time, struggling with individual emotions, and dealing with the disruption, uncer-
tainty, and turmoil caused by the diagnosis of cancer (Harden et al. 2002; Sherman
and Simonton 2001; Veach and Nicholas 1998). Healthcare professionals focus on the
patient’s needs and direct resources to ensure that those needs are met. The caregiver
is assumed willing to accept the supporting role demanded, without any significant
assessment of caregiver skills or needs. The nature of cancer and its treatment is such
that the demands placed on the caregiver are ambiguous and unpredictable. There
are, however, several issues that uniformly emerge immediately.
Emotional Support and Acceptance Approximately 70% of caregivers for adults
with cancer are spouses and many others are their adult children (Bakas et al. 2001;
Hayman et al. 2001; Weitzner et al. 2000); and virtually all initial primary caregivers
of children with cancer are parents. Laizner et al. (1993) found that many of these
caregivers believe that they must focus on the physical and emotional needs of the
patient, and not voice their personal doubts and insecurities, which they fear could
upset or adversely affect their loved one.
The complexity and depth of support required varies widely among caregivers,
however, many report that at the time of diagnosis, the amount of support required
usually exceeds anything ever previously experienced by the primary caregiver and/or
the extended family. The medical situation is often unstable and evolving rapidly
(especially when children are the patients), leaving no option for a leisurely learning
curve (Hardwick and Lawson 1995; Laizner et al. 1993; Rivera 1997; Stetz and
Brown 1997).
This illustrates the Yun et al. (2005) model well. Caregivers sacrifice their own
needs (to express feelings and receive emotional support) for the good of the loved
one with cancer (needs positive attitude), and in so doing caregivers sacrifice some
of their quality of life.
Medical Training The rapid movement of patients from inpatient treatment settings
to outpatient treatment mandates caregiver training and involvement in many med-
ically related aspects of care (Hayman et al. 2001; Weitzner et al. 2000). This has
been shown to cause considerable apprehension in caregivers (Hardwick and Lawson
1995; Nijboer et al. 1999). With ever shortening lengths of (inpatient) stay, this educa-
tion and training must now begin almost immediately after diagnosis (Pasacreta et al.
2000). Necessary education will almost certainly include central line care, adminis-
tration of intravenous fluids and medication, and administration of pain medication
(by a variety of routes). It can also include wound care, stoma care, inhalation treat-
ments, and other aspects of physical care to the person’s body. The assumption of
these medically related tasks can be overwhelming at best, and terror provoking at
worst.
One specific area of grave concern for many caregivers is providing or assisting
their family member with personal hygiene activities, such as bathing and catheter
care (Bakas et al. 2001; Oberst et al. 1989). As Yun’s model (2005) suggests, the
caregiver’s concern and distress increase as the level of the body care required in-
creases. Caregivers may find themselves routinely performing care tasks that were
once considered repulsive or embarrassing.
Caregiver Education Caregivers work to identify information about the person with
cancer’s specific diagnosis and proposed treatment after diagnosis (Harden et al.
2002; Nijboer et al. 1999; Schumacher 1996; Stetz and Brown 1997). Often this
task takes the form of asking questions of the oncologist, but because each indi-
vidual needs and desires different types of information, persons with cancer and
their caregivers often do not get the information they need. The shocking nature of
the diagnosis along with limited appointment times in busy oncology offices result
in many questions going unasked and unanswered, leaving the family unprepared
to provide care at home (Harden et al. 2002). This point was clearly illustrated by
Harden et al. (2002), who interviewed 20 couples living with prostate cancer and
found that the dyads believed it would have been helpful for a trained clinician to
spend some time with them answering questions and tailoring information to the
specific needs of their family situation.
Because many caregivers do not receive the education they need at the time of diag-
nosis, many also conduct private research on the Internet (Lewis et al. 2005). The easy
availability and volume of information obtainable on the Internet and other electronic
sources can overload both the person with cancer and caregiver. The caregiver then
needs to filter through legitimate medical information and other information which
is from nonstandard, nonreviewed, and unconfirmed sources (Dahl and Portenoy
2004). The medical team must be willing and available to interpret and explain elec-
tronic and other literature to help prevent their patients and families from falling
victim to so-called “miracle cures,” such as St. John’s Wort, which may interfere
with certain types of chemotherapy, and ice caps or scalp tourniquets (marketed to
prevent hair loss), which simply do not work.
Pain Control Much has been written about the inadequate pain control of cancer
patients. Over 80% of patients with advanced cancer will experience significant pain
during the course of their illness (Walsh 2000; Wolfe et al. 2000). Adequate pain
control is vitally important to both mental and physical health, and is necessary
for optimal patient care. In the period immediately following diagnosis, the person
with cancer may experience pain associated with diagnostic or therapeutic surgery,
the cancer itself, or treatment via radiation or chemotherapy (such as the jaw pain
experienced with Vincristine).
In most cases, the caregiver will be asked to assume a significant role in the
management of the cancer pain symptoms, but they face many potential barriers to
effective pain management, and many caregivers will never gain confidence in pain
management (Kimberlin et al. 2004). Barriers to effective pain management include
fear of drug addiction and side effects, lack of understanding of the implications of
drug tolerance, fear of respiratory depression, and a lack of understanding of the
mechanisms involved in persistent pain (Aranda et al. 2004). Caregivers describe
pain management as emotionally draining and requiring significant psychological
adjustment, however, studies have shown that the family caregivers’ attitudes about
the management of cancer pain greatly influence the person with cancer’s experience
of the disease (Aranda et al. 2004; Given et al. 2001).
From the caregiver perspective, the emotional aspects of seeing a loved one suf-
fer in pain cannot be underestimated. However, traditional societal norms admonish
against the use of narcotics and warn of the dangers of addiction, and some even
suggest that there is an implied physical and mental weakness associated with the
continued use of narcotics (Aranda et al. 2004). These norms may contribute both to
the person with cancer’s willingness to report pain accurately and the caregivers will-
ingness to administer pain medication (Kimberlin et al. 2004). Focused instruction
of the caregiver in the management of cancer pain, however, has resulted in improved
management of pain, so clinicians must be willing to provide caregivers with ade-
quate information and support to facilitate appropriate cancer pain management of
their loved one.
Kimberlin et al. (2004) interviewed 22 cancer patients and 15 caregivers. Their
findings suggest that improved support of caregivers in pain management will involve
clinicians answering questions thoroughly, providing complete information about
what to expect from the medication and the disease, providing written information,
avoiding jargon, and verifying patient (and family) understanding (Kimberlin et al.
2004).
Insurance Issues Compliance with insurance company contract requirements can
be difficult and confusing. In one extreme case, a specific company required that the
insured (father) leave the bedside of his intubated, critically ill child to initiate the
certification process. The company steadfastly refused to speak with any healthcare
personnel until the father made the initiating call. Other companies may be less
demanding, but interactions with an insurance company can be overwhelming, and
if not managed effectively, can, as Yun’s model suggests, contribute to a decline in
the caregiver’s quality of life.
The caregiver is often thrust into a situation that rapidly becomes confrontational
in nature. While the patient and caregiver usually do not have to deal with issues
related to the hospital stay, outpatient therapies and prescriptions rapidly become an
increasing source of frustration and difficulty. Responsibility for the coordination of
home care services, durable medical equipment deliveries, and picking up prescrip-
tions often falls solely on the caregiver, and if not managed successfully, a delay in
care may be the only option, as most services are far too expensive for the cost to be
born out of pocket.
In an effort to prevent problems with insurance and service management, the
insurance company may assign a case manager (in-house or through an oncology
management company) to the patient. While the initial contact will be with the
patient, the caregiver often assumes responsibility for communication with the case
manager. Many people are not familiar with the concept of case management and
are fearful of the intrusion of this stranger in their lives.
For the elderly patient, Medicare presents a unique set of issues. The caregiver
often finds that complex rules that govern the provision of care and the coverage are
significantly different than that provided by commercial insurance. Some patients
and caregivers will also be concerned with Medigap Insurance and its associated
rules. Outpatient and ancillary service coverage under Medicare is not necessarily
intuitive or predictable, and the complex payment rules may be a source of frustration
and confusion to both patients and caregivers.
Financial Issues Informal caregiving costs account for a significant portion of the
direct nonmedical costs associated with a cancer diagnosis (Hayman et al. 2001).
The caregiver must assume responsibility for financial matters, including payment
of scheduled debts (mortgage, rent, etc.) and allocation of financial resources to
other responsibilities (food, utilities, and now, medically related expenses). Out-
patient medications, if not covered by insurance, can represent a substantial and
overwhelming burden. Zofran (or any of its competitors) can cost $200 for ten doses
(3 days’ worth of medication). The stories of families being forced to choose between
medication and other needs can become a tragic reality in an instant.
Family Issues Depending on the age of the patient and family members, the stage of
the family’s development (newly forming family, young family, aging family), and
the dynamics of the family, the effects of a cancer diagnosis on the family unit will
vary (Harden 2005; Nijboer et al. 2000; Sherman and Simonton 2001; Veach and
Nicholas 1998). These family characteristics affect who will assume the role of the
primary caregiver (parent, spouse, sibling, or child), the tasks associated with care-
giving, and the family’s ability to cope effectively with the diagnosis. One study by
Nijboer et al. (2000) found that women, younger caregivers, and caregivers with high
socioeconomic status tend to experience caregiving negatively, while others may ex-
perience it in a more positive light. Veach and Nicholas (1998) suggest that oncology
clinicians can improve the caregiving experience by doing what Yun’s model sug-
gests, thus decreasing caregiver burden. They further propose that caregiver burden
can be reduced if healthcare providers more effectively tailor treatments to meet the
needs of their patients and caregivers by performing a psychosocial assessment on
the family unit.
Treatment and Recovery
While medical personnel may be upbeat, delighted, and encouraged by the fact that
the duration of newer chemotherapy regimens is measured in months instead of
years, a patient and/or caregiver can easily be overwhelmed by a proposed treatment
protocol of several months’ duration. One father, when told that his son would be
receiving treatment for 9 months and close follow-up thereafter dryly noted that
a highly publicized repeat felon had just received a shorter “sentence.” He openly
expressed concern about the quality of his son’s life, and his (the father’s) own ability
to cope with seeing his child repeatedly receiving chemotherapy treatments. His
comments underscore the apprehension and emotions that accompany the realization
that a loved one has an illness that will not be cured with a short course of antibiotics.
Once past the initial diagnostic period, the demands placed on the caregiver will
change (Nijboer et al. 2000). Most caregivers report that the most time-consuming
tasks during treatment and recovery are emotional support, transportation to vari-
ous medical appointments, and monitoring symptoms (Bakas et al. 2001; Sarna and
McCorkle 1996; Sherman and Simonton 2001). Other issues include ongoing in-
surance problems, operation and maintenance of the household, assistance with
activities of daily living, maintenance of the caregiver’s own life and needs, and
fatigue (Jepson et al. 1999; Toseland et al. 1995).
Emotional Support Spouses identify emotional support as the most time-consuming
aspect of care (Bakas et al. 2001). While the psychosocial status of caregivers tends
to improve and distress seems to diminish over the first 3 to 6 months following
diagnosis (Sherman and Simonton 2001), the provision of emotional support to the
person with cancer remains a significant task during therapy and recovery. Caregivers,
in assessing their ability to provide emotional support for patients, have identified
that they, themselves, have educational needs in the area of interpersonal relations,
communication, and provision of emotional support (Jepson et al. 1999; Kimberlin
et al. 2004). No matter how strong the existing relationship between the caregiver
and the person with cancer is, the demands for emotional support (due to fears about
the effectiveness of therapy, side effects, and the possibility of relapse) in the setting
of cancer therapy and recovery are significant and, asYun’s model implies, will likely
exceed the experience of the caregiver.
Transportation Nonspousal caregivers (usually adult children or siblings of adults
with cancer and parents of children with cancer) have identified transportation as the
most time-consuming aspect of care provision (Bakas et al. 2001). These caregivers
often have multiple responsibilities, including families and children, who place other
demands on time, vehicles, and availability. Therefore, the caregivers are often placed
in the difficult situation of choosing between two or more competing priorities.
Transportation of the cancer patient often involves much more than physical move-
ment of the patient from place to place. Many outpatient chemotherapy regimens
incorporate home infusion therapy, which requires a backpack (which may be pulled
on wheels as opposed to worn on the back), weighing more than 30 lbs, to which
the patient is continuously attached. Many patients and caregivers report that there
is no easy way to secure these items on a wheelchair, walker, or in an automobile.
Similarly, IV tubing is easily twisted, kinked, or even broken, during transport.
Other issues that may affect transportation must be addressed, including the phys-
ical stability, gait, and size of the person with cancer. Many cancer medications, such
as lorazepam (used to control nausea and vomiting), can adversely affect stability.
In addition, chemotherapy agents, such as vincristine and cisplatin, can cause pe-
ripheral neuropathy, which makes walking difficult and produces an unsteady gait.
Finally, the size of the patient plays a large part in whether or not a caregiver can
safely transport him (or her) to therapy. A petite spouse may be injured when a much
larger patient loses balance and the caregiver tries to prevent a fall.
Monitoring Symptoms Monitoring symptoms, with the implications for medical care
involved, is time consuming and emotionally burdensome for the caregiver (Bakas
et al. 2001; Toseland et al. 1995). The caregiver must first learn a certain amount
of medical information and accept the responsibility (emotionally, if not legally)
for errors in judgment, and must accept the impact those errors might have on the
patient’s health, well-being, and chances of survival.
Caregivers often express concern during treatment and recovery that certain symp-
toms are indicative of disease progression. This concern is not always communicated
to the patient and may not be communicated to the treating physician. Worsening
pain is the most common symptom that causes this concern, however, any symptom,
from a change in neurologic status to new lymphadenopathy, will provoke concern
(Aranda et al. 2004).
Pain Control Pain, if present past the initial diagnosis period, requires different
interventions and places different responsibilities on the caregiver (Cleeland et al.
1994; Walsh 2000). The caregiver must be taught management techniques to deal
with pain associated with treatment (Ferrell et al. 1995). Drug tolerance becomes a
more important issue and chronic pain may require ongoing narcotic administration,
via an intravenous patient-controlled analgesia (PCA) pump, epidural catheter, sus-
tained release oral preparations, or transdermal administration (Aranda et al. 2004).
Management of breakthrough pain with short-acting opioids may also be necessary.
While not all of these decisions belong to the caregiver alone, remembering to change
transdermal patches and deciding when to give “breakthrough medications” often
are the responsibilities of the caregiver and can be challenging.
In addition to the previously listed concerns surrounding the pain management,
other social aspects unexpectedly emerge (Ferrell et al. 1991). For example, re-
cent publicity surrounding the drug Oxycontin has caused substantial difficulties for
patients and their caregivers (U.S. Government Accounting Office 2004). Some care-
givers report experiences with pharmacists, who refused to fill legitimate Oxycontin
prescriptions, and some people with cancer have reported having their medication
stolen. Other people with cancer pain have stated that they fear for their own safety
and hide the fact that pain medications are in their homes. Conditions such as these
have caused the U.S. government to reexamine the FDA’s policies on risk manage-
ment in order to decrease the social dangers associated with the use of powerful
opioids in people with severe pain (U.S. Government Accounting Office 2004).
Financial and Insurance Issues The caregiver, who must maintain employment
outside of the home, will likely be faced with the necessity of returning to work
while the patient is still receiving treatment (Hayman et al. 2001). The primary
caregiver must then balance the needs of the patient, the demands of a job, and
the needs involved in running a household. The Family Medical Leave Act of 1993
(FMLA; Public Law 103-3) allows 12 weeks of leave, but this is often without pay
(The Family Medical Leave Act of 1993). Most caregivers utilize FMLA leave on
an intermittent basis, allowing them to be present and provide care during actual
treatments. They may then need to locate alternative caregivers for when the primary
caregiver is at work.
Allocation of income then becomes an issue for some families, especially those
with children at home (Yun et al. 2005). Up to 25% of the disposable income of
a family will be consumed by medically related, nonreimbursed expenses. The pa-
tient needs may take priority over many other family needs during treatment and
for months after the treatment is complete. Many families have residual financial
obligations at the completion of chemotherapy.
Insurance issues may continue to pose problems for people with cancer and their
caregivers during therapy and recovery. Many note the burden of a seemingly endless
amount of paperwork. Rules, limitations on care, limitations on medications continue
to cause confusion and fatigue in caregivers. Most caregivers do not have a concept
of reinsurance and expect that it will be transparent to the patient (and, therefore,
to them). This is not always the case. Reinsurance companies have their own case
managers, may require that the family “start from scratch” in establishing a care plan,
and may even require that some care providers be changed. This can be especially
difficult on both patient and caregiver, for example, when a home care agency is
changed.
Office copayments may also become a financial burden. As the provision of care is
shifted to an outpatient setting, the financial burden of copayments increases signif-
icantly. Healthcare providers are contractually prohibited from waiving copayments
and must make an effort to collect them. Many insurance companies include a provi-
sion in the coverage documents that stipulates that the insurance can be cancelled for
failure to pay copayments. It is not unusual for a patient to require five office visits
in a week that chemotherapy is administered, and $20 copayments quickly add up
to a substantial financial burden.
The copayments on home care vary. While some plans cover home care at 100%,
others cover only a percentage of the charges. It is important for the person with
cancer and caregiver to understand the full limitations of coverage, and the patient
responsibility for home care charges should be determined before agreeing to home
care as part of the care management plan.
Respite care is an additional expense the family may face. The primary caregiver
is often responsible for determining the availability of respite care, scheduling the
care, and finding the financial resources to pay for it. Insurance companies typically
do not cover the cost of respite care, therefore many families must call upon members
of the extended family to assist with care on an intermittent basis. While the “respite”
required in this setting may only be an evening or part of a day, meeting that need
can be a daunting task for the caregiver (Jepson et al. 1999; Nijboer et al. 1998).
Stress and Fatigue Caregiver stress and fatigue is a well-documented event (Jensen
and Given 1993; Nijboer et al. 1998; Nijboer et al. 1999). The basis of caregiver fa-
tigue is multifactorial, and includes employment status, hours of caregiving required
daily, health of the caregiver, emotional requirements of caregiving, and duration of
the caregiving need (Gaston-Johansson et al 2004; Weitzner et al. 2000). However,
none of these criteria are reliably predictable of caregiver fatigue.
Given the increasing importance of the caregiver role in the daily life of a person
with cancer, medical providers must remain sensitive to the presence of caregiver
stress and fatigue (Gaston-Johansson et al. 2004). Lewis (2004) reports her research
on caregivers of women with breast cancer revealed that the stress of caregiving
may be too much for many caregivers and they may never learn to cope or provide
all types of care. In these cases, modifications of treatment regimens and home care
plans may be necessary to ensure people with cancer receive the necessary home care
(Lewis 2004). Due to the absence of a tool that easily measures caregiver fatigue,
the healthcare providers remain responsible for an accurate assessment of caregiver
status and capabilities.
Disease Progression and Terminal Care
Disease progression and terminal care may require long-term caregiving; however,
they may also occur quickly or intermittently and so the caregiver needs during these
phases are briefly addressed here.
When cancer recurs or progresses to advanced stages, the burdens of caregiving
on the family change and can result in a decline in health of both the person with
cancer and, as Yun et al. (2005) predict, the caregiver (Nijboer et al. 1998; Yun et al.
2005). Many studies report that most terminally ill cancer patients would prefer to
die in their homes (Singer et al. 2005). However, achieving this goal is not as easy
as it sounds. Providing terminal care at home can be physically and emotionally
challenging for both the caregiver and the person with cancer. The primary concerns
of recurrence and progression include symptom management, financial concerns,
and emotional support for both the patient and the caregiver (Ferrario et al. 2004;
Given et al. 2001).
Symptom Management As cancer progresses, treatments become less effective.
During this phase, caregivers have the responsibility of identifying troublesome
symptoms, deciding when to consult a clinician, and advocating for the patient’s
wishes (Given et al. 2001). They continue to face the stigma and fears associated
with long-term use of narcotics and may be asked to master new skills and man-
age new routes of medication administration, such as intravenous patient-controlled
analgesia (PCA).
While pain remains a tremendous concern, dyspnea, air hunger, and fatigue often
become more troublesome for people as their cancer progresses (Wolfe et al. 2000).
These symptoms can be difficult to manage and can contribute to fear and anxiety in
the caregiver.
Financial Concerns The extended duration of the illness and the increasing intensity
of care required during this period often result in caregivers quitting all work outside
the home and focusing completely on the needs of the person with cancer (Pasacreta
et al. 2000; Yun et al. 2005). Though the need for transportation and the copays
associated with frequent medical bills may decrease, the sudden decrease in family
income can create significant problems for caregivers and their families.
Emotional Support The most commonly reported emotional symptom of both care-
givers and patients during disease progression is anxiety about what to expect (Singer
et al. 2005). Both report the need for support and honesty from clinicians during this
time. While more and more progressive disease is being managed at home with pal-
liative care teams, the burden this intense care places on caregivers can put them
at risk of long-term bereavement and pathologic grief (Ferrario et al. 2004). Clini-
cians must assess caregivers’ well-being and intervene when necessary, particularly
in the area of emotional support (Bakas et al. 2001). Singer et al. (2005), however,
report that though they experience great financial and emotional burdens, caregivers
who provide end-of-life care at home are more likely to be satisfied with the care
experience than those whose loved ones die in the hospital.
Special Concerns for Caregivers of Children with Cancer
Nearly all caregivers of children with cancer are their parents. As with adults, research
on these caregivers has revealed that parent caregivers also suffer from uncertainty
and physical and emotional strain (Svavarsdottir 2005). Parents report that their
primary concern when providing care for a child with cancer is providing emotional
support to that child. Other concerns include balancing work and caregiving activities,
including transportation.
Caregivers of children with cancer are unique, however, in that many report that
one of their most challenging primary concerns is providing emotional support to
their partner, the child’s other parent (Svavarsdottir 2005). This can place significant
strain not only on the caregiver, but also on the marriage. Many couples separate
or divorce during or after the serious illness or death of a child (Sirki et al. 2000).
Like adult caregivers, however, caregivers of children with cancer report that their
primary need is accurate information tailored specifically to the needs of their family
(Lewis et al. 2005). Information would be helpful both for the caregiver role and for
the family relationship.
Special Concerns for the Teenage/Young Adult Caregiver
Literature on young caregivers is sparse, and much is retrospective in nature. The

incidence of children and teens caring for older adults is underestimated. There are
many possible circumstances that place a child or teen in the position of a young
caregiver. These include illness in a parent, grandparent, or other relative residing
in the child’s home. Even if the young person is not the primary caregiver, he or
she may be asked to participate in care. In such instances, the young caregiver may
face additional responsibilities and tasks, possible physical changes to the home
environment, alterations to school schedules, and limitations on activities outside of
school and the home, as well as the issues identified for adult caregivers (Gates and
Lackey 1998).
The most common tasks assigned to young caregivers include running errands,
household chores, assisting with meals, taking care of other children, providing
companionship (not leaving an adult unattended), assistance with activities of daily
living, and shopping (Gates and Lackey 1998; Hilton and Elfert 1996). A significant
percentage of young caregivers are required to assist with personal care issues, in-
cluding bathing, use of the bathroom, and dressing (Lackey and Gates 2001). They
also administer medication. A small percentage of young caregivers have even re-
ported that they had to deal with catheter care, colostomy care, or dressing changes
(Lackey and Gates 2001).
For young caregivers, the school can be an invaluable time of respite. Many report
that school is relatively protected time, and that schools in general are accommodating
in meeting their specific needs. Some reported that they did have to miss a few days
of school to accompany a patient for therapy or for a physician office visit, but many
young caregivers also report that their school provided significant support for their
situation. School is often viewed as a haven from caregiving. It is interesting to note,
however, that most of the articles in the current literature pre-date the emphasis now
placed on formal Individual Education Programs (IEPs) and Section 504 educational
plans. The current focus in many school districts is that all accommodations of the
educational process must be through these plans. The legislation establishing these
plans does not address the issue of the child as a caregiver.
Fatigue is cited as the major issue for young caregivers. One study noted that the
typical day for a young caregiver started at 6 A.M. and ended at 10 P.M. Most young
caregivers cite the need for added rest—as opposed to tailored information—as their
primary concern while serving as a caregiver.
Responsibilities of the Medical Community: Current Status

and Future Direction
Education
As noted earlier in this chapter, many caregivers stress the desire to work with their
physicians to create cancer treatment and home care plans that are tailored to the
specific need of their families (Lewis et al. 2005). In addition, Stewart (1995) found
better health outcomes in patients who had good communication with their providers
than those who did not. Much of the literature suggests that new models of cancer care
and new reimbursement strategies for care have placed the responsibility for identi-
fying the needs of both patients and their family caregivers on healthcare providers
(Merckaert et al. 2005). For physicians and nurses to be effective in this role, however,
their educational programs must include courses on the development of excellent
communication skills as well as the skills necessary to locate community resources
and connect caregivers with these supports (Merckaert et al. 2005; Stewart 1995).
Currently, however, studies suggest that communication among healthcare
providers and patients and/or caregivers is less than ideal (Horwitz et al. 1998;
Wissow et al. 2005). In one study, 81.1% of subjects reported that they had a psy-
chosocial concern about a child that they thought was worthy of discussion with
the child’s physician, but only 41% of the subjects actually discussed the topic at
the visit (Horwitz et al. 1998). Wissow et al. (2005) found that physicians may
contribute to this lack of communication by dismissing or ignoring patient and/or
caregiver hints of psychosocial distress. Merkert et al. (2005), however, found that
communication skills training programs can be effective and highly recommended
them to professionals caring for cancer patients and their families.
Research
Numerous studies have been completed or are currently under way, which examine
the roles and needs of the caregivers of people with cancer. A brief OVID search
yields about 600 citations (January 9, 2007). Currently, many focus on interventions
which both support the caregiver in providing the needs of the ill family member
and in maintaining their own health and mental/emotional well-being (Pasacreta and
McCorkle 2000).
As suggested in the education section, future additional research is needed in the
areas of communication between providers and caregivers as well as in identify-
ing and providing the needs of caregivers in light of the limited resources of most
healthcare practices.
Public Policy
Though much of the work of family caregivers often goes unseen, the needs of family
caregivers have not gone unnoticed in the realm of public policy. Powerful lobbying
groups such as the American Cancer Society have taken up the cause and addressed it
with policy makers. Currently, in the 109th Congress, 75 bills mentioning caregivers,
in some capacity, have been introduced into either the House or the Senate (Library
of Congress 2005). Though the status of these bills is not yet resolved, updates on
these and other bills can be found at http://thomas.loc.gov/.
In the realm of public law, however, one of the most significant acts affecting
caregivers has been the Family Medical Leave Act of 1993 (Public Law 103–3).
As mentioned earlier, this act allows 12 weeks of leave without pay (“The Family
Medical Leave Act of 1993”). Most caregivers utilize FMLA leave on an intermittent
basis, allowing them to be present and provide care during actual treatments without
fear of losing their job.
While this has done a lot to allow families to remain financially stable while acting
as caregivers, it has not provided much for the physical and emotional health of those
who need to utilize it. Further public policies are needed to support the work of home
caregiving and to provide much-needed respite care.
Conclusion
The discussion in this chapter has demonstrated that the medical community does not
yet fully respond to the needs of caregivers or recognize the important role that they
play in total patient care (Bakas et al. 2001; Given et al. 2001; Jansma et al. 2005).
While virtually every article referenced on caregiving indicated the necessity for
further study, it is clear that the medical community must respond to the already well-
demonstrated needs of caregivers, both for the health of the primary patient as well as
the health and well-being of the caregivers. As illustrated in Yun’s Caregiver Burden
Model, healthcare providers must work to decrease caregiver burden to improve
caregiver’s quality of life and thus make the caregiving experience more effective
and rewarding.
The future response of the medical community to the needs of caregivers should
include a concerted effort to provide:
1. Recognition that cancer is a family illness and family caregivers are a valuable
part of the patient care team.
2. Quality printed educational material for patient and caregiver with appropriate,
tailored emphasis for each recipient, and geared for specific stages of the disease
process (diagnosis, treatment, follow-up).
3. Assessment of caregiver skills and interventions designed to improve the skills
needed to provide care.
4. Advocacy support for dealing with insurance and financial issues.
5. Support groups and other interventions whose purpose is to improve the support
skills of the caregiver, as well as the provision of emotional support.
6. Assessment of caregiver ability to continue to provide the level of care demanded
by the patient’s medical condition. Caregiver fatigue, job status, and additional
family obligations must be considered and analyzed in an ongoing fashion. This
will serve to protect the health of the caregiver, and the safety of the patient.
Caregivers are the often-unrecognized backbone of the healthcare team. Their partic-
ipation in the care of the person with cancer is both demanded and essential. Studies
have shown that with the right support, providing care for a loved one with cancer
can be an overall positive experience (Singer et al. 2005; Weitzner et al. 2000).
Ample research has been done to document many of the needs of these individuals,
from emotional and educational support to practical assistance in the provision of
transportation and running of a household. They require and deserve support for their
efforts, their needs, and their own lives as they provide care and service to a family
member with cancer.
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Chapter 8
Issues in Caregiving for Cancer Patients
with Long-Term Care Needs
Barry J. Jacobs
As survival rates for even the most lethal forms of cancer have increased over the past
several decades, more and more cancer survivors and their caregivers have had to live with
the disease as a long-term, chronic stressor affecting the quality of their llives. This chapter
will cull the research, educational and clinical literatures about long-term cancer caregiving
to provide an overview of some of the key issues–including late effects of medical treatments,
psychological consequences of caregiving, decreased social supports, and financial strain–
with which many families have to contend. A case vignette will be used to illustrate these
issues and to suggest means by which families can live as well as possible with cancer over
extended periods of time.
Mrs. Lucas’husband, Bert Lucas, a retired minister, is part of an increasing cadre of

Americans who are long-term survivors of cancer. Because of the progress in early
detection and treatments, the number of those living with cancer and its residual ef-
fects rose sharply in the last several decades from 3 million in 1971 to over 10 million
in 2002 (National Cancer Institute 2006a). According to the Annual Report to the Na-
tion on the Status of Cancer, overall cancer death rates in the United States decreased
by 1.1% per year from 1993 through 2002; for men, death rates declined for 12 of
the 15 most common cancers; for women, death rates declined in 9 of the 15 most
common cancers (Edwards et al. 2005). Survival rates for even the most lethal forms
of cancer have increased. The patients with advanced non-small-cell lung cancer
are living longer when administered newer chemotherapeutic agents and a platinum
derivative (Winton et al. 2005). The use of multiple chemotherapeutic agents has
also meant that patients with ovarian cancer are surviving for increasing lengths
of time with periodic recurrences requiring treatments as they might with any other
chronic disease (Markman 2005; Tummala and McGuire 2005).
In response to these increased survival rates, the “cancer survivorship” movement
has taken shape over the past 25 years. In 1986, a group of cancer researchers and
educators formed a patient-led advocacy group called the National Coalition for
B. J. Jacobs ()
Crozer-Keystone Family Medicine Residency Program, 1260 E. Woodland Avenue,
19094 Springfield, PA, USA

146 B. J. Jacobs
Cancer Survivorship to provide support services to the growing number of patients

who were living longer after being diagnosed with cancer, and to encourage the study
of those cancer survivors (National Coalition for Cancer Survivorship 2006). Partly,
as a result of that group’s pioneering efforts, there has been an upsurge in research
articles over the past 15 years on “cancer survivorship” (Aziz and Rowland 2003;
Deimling et al. 2002). Many of these studies explore the “quality of life” issues
faced by cancer survivors (Abendstein et al. 2005; Carver et al. 2006; Ferrell et al.
2005; Ganz et al. 2002; Northouse et al. 2002), including physical sequelae, changes
in emotional well-being, spiritual meanings, and financial implications. In 1996,
the National Institute of Health’s National Cancer Institute formed its own Office of
Cancer Survivorship “in recognition of the large number of individuals now surviving
for long periods of time and their unique and poorly understood needs” (National
Cancer Institute 2006b).
Just as it took time for cancer survivors to receive the attention of researchers and
policymakers, the lives of those survivors’ family caregivers, like Mrs. Lucas, have
only begun to be studied extensively. This research is necessarily complex, attempt-
ing to understand the impact of multiple, interacting variables in order to answer
the following questions: How are family caregivers affected by caring for a loved
one with cancer over long periods of time? Which components of the caregiving
experience have the greatest impact on family members’ capacities for coping? Does
the family’s coping affect the patient’s coping, and vice versa? Does the quality of
family caregiving influence the patient’s clinical outcomes and survival? Does the
patient’s clinical outcome affect family caregivers’ long-term psychological adjust-
ment? After arriving at their own answers to these questions, a few authors have gone
on to devise specific family educational and clinical interventions to help relatives
better endure cancer caregiving’s arduous demands (Given et al. 2004; McMillan
et al. 2006; Northouse 2005; Northouse et al. 2005).
This chapter will cull the research, educational, and clinical literatures about
long-term cancer caregiving to provide an overview of some of the key issues with
which family members have to contend. The conclusions that will be drawn about
future directions for practice, education, research, and policy will aim to address one
specific question: How can we create conditions for families like the Lucas’ to live
as well as possible over time with the specter of cancer in their lives?
Cancer as a Stressful Chronic Disease
There have been many aspects of her husband’s ordeal with cancer over the last
4 years that have troubled Mrs. Lucas. Early on, accompanying him to the hospital
for the stem cell transplant and then weeks of chemotherapy was extremely weary-
ing. However, at least at that time, her three adult sons, along with their wives,
traveled frequently from their out-of-town homes to support their parents. After the
initial period of her husband’s intensive treatments, however, their children became
focused again on their own lives and families and visited less frequently. Mrs. Lucas
began to experience a lack of family support. Unfortunately, she was reluctant to
ask members of her husband’s former congregation to help them for fear of impos-
ing her burdens upon them. Instead, she took solely upon herself the many helper
roles her husband needed—she became a nurse to dole him pills, a nurse’s aide to
help him get back and forth to the bathroom several times a night, a chauffeur to
transport him from one medical office to another, a cook to make nutritious meals
for him, a cheerleader to rally him, and, as often as not, a decision-maker to tell
him what to do since despondency had robbed him of his self-sufficiency and con-
fidence. She would not mind playing those roles if he were at least appreciative,
but he seemed to take her efforts for granted. She consequently felt trapped in a
daily grind of chores and obligations that gave her little gratification. This made
her sad and resentful and caused her to question why God had chosen to punish
them so.
There are many factors that appear to be affecting Mrs. Lucas’ coping and her
capacity for taking care of her husband, including the nature of her husband’s dis-
ease and its residual effects, his mood and responses to her efforts, her degree of
family and social support, her capacity for shifting to new family roles, the degree
of satisfaction she derives from her relationship with her husband, her overall mood,
and her appraisal of the caregiving situation. While many of them are interrelated,
examining some of them separately will provide insight into the effects of long-term
cancer caregiving in general.
The Disease’s Severity, Course, and Late Effects
Theorists who have created conceptual models for understanding the impact of any
chronic illness upon families have long posited that a disease’s severity and course
weigh heavily on the family’s capacity for coping because sicker patients are more
debilitated and need more care (Rolland 1994). In studies of the impact of cancer,
numerous authors have suggested that the more advanced the stage of the disease,
the greater the emotional duress suffered by the patient; this is likely due to cancer’s
potential threat to life and to the fact that sicker individuals need more invasive and
distressing treatments (Halford et al. 2000). As the patient goes, so often go the
family caregivers. Wellisch (1995) cited two studies (Cancer Care Inc. and National
Cancer Foundation 1977; Koocher and O’Malley 1981) in which there was “found
to be a positive correlation between length and severity of illness and measures of
dysfunction in family members” (p. 389).
Recent studies of long-term cancer survivors raise other concerns for family
members. In a review of the literature, Aziz and Rowland (2003) concluded that:
It is becoming an acknowledged fact that most cancer treatment options available and in
use today will affect the future health and life of those diagnosed with this disease. Adverse
cancer treatment-related sequelae thus carry the potential to contribute to the ongoing burden
of illness, health care costs, and decrease length and quality of survival (p. 258).
148 B. J. Jacobs
This has been researched most extensively with pediatric cancer survivors. Bhatia
(2005) found that, as a result of the toxicity of cancer treatments and/or an individ-
ual’s genetic propensity to develop cancer, “approximately two thirds of the survivors
of childhood cancer will experience at least one late effect, and about one third will
experience a late effect that is severe or life-threatening.” Such effects include “im-
pairment in growth and development, neurocognitive dysfunction, cardiopulmonary
compromise, endocrine dysfunction, renal impairment, gastrointestinal dysfunction,
musculoskeletal sequelae, and subsequent malignancies.” An overview of the Child-
hood Cancer Survivor Study of over 14,000 pediatric cancer survivors noted similar
results, but also cited additional complications such as “pregnancy loss, giving birth
to offspring with low birth weights, and decreased educational attainment” (Robison
2005). While none of these researchers directly address the implications for family
caregivers, it stands to reason that the likelihood of late medical effects creates a
degree of uncertainty about the future health of loved ones that negatively impact
relatives’ coping. The actual advent of such effects will probably increase caregivers’
burden and distress.
Mrs. Lucas has had to deal with the delayed effects of her husband’s cancer treat-
ments within months of his diagnosis. While she realizes that the neuropathic pain he
now suffers is not his fault, she finds his constant complaints of burning sensations
and his inability to engage in physical chores both grating and burdensome. Occa-
sionally, she becomes so frustrated that she urges him to overcome his pain and do
more. That only prompts Mr. Lucas to feel misunderstood and accuse her of being
uncaring. This response adds to Mrs. Lucas’ frustration and sense of hopelessness.
Caregiver Factors: Personality and Appraisal
While the characteristics of the patient’s disease have an impact on patient and care-
giver coping, other factors may have even greater import. Compas et al. (1994) found
that the severity of the cancer was only moderately related to the degree of anxiety or
depression a patient suffered. Other authors have reached similar conclusions about
the patient’s relatives, arguing that attributes of the family members themselves,
rather than the specifics of the cancer, are more predictive of difficulties of coping
among caregivers (Given et al. 2004). This is consistent with the research finding
that the effects of caregiving vary widely among family members even when they
are dealing with similar patient medical circumstances (Braithwaite 2000).
Both personality characteristics and appraisal have been widely studied and linked
with caregiver depression. In their review of the personality literature, Nijboer et al.
(2001) noted that mastery, neuroticism (defined as a state of being “anxious, moody,
and frequently depressed”), and extraversion are traits that have been associated with
depression, especially during stressful times, and that caregivers with a greater sense
of mastery and a lower degree of neuroticism were less prone to depression. In their
own study of 148 colorectal cancer patients and their partners over 6 months post-
hospital discharge, they found that caregivers’ depression was “strongly predicted”
by neuroticism and to a lesser degree by mastery and extraversion. Kim et al. (2005)
studied 120 spouses of lung cancer patients and arrived at similar results, finding
that “neuroticism was directly associated with greater depressive symptoms” (Inter-
estingly, both studies linked high neuroticism with lower levels of social support,
another factor discussed below). While it would not be immediately evident that per-
sonality characteristics—stable, crystallized, long-term traits—could be amenable
to change by clinical interventions, Nijboer et al. (2001) suggested that by providing
caregivers with skills to give them a greater sense of mastery and ensuring that they
have positive interactions with the patients, healthcare professionals can decrease
rates of caregiver depression.
Other researchers have focused on a related but distinct attribute of family mem-
bers: caregiver appraisal. Defined variously as the way a caregiver perceives the
patient’s condition and the need for caregiving or the meanings that she attributes
to the medical ordeal, appraisals are seen as attitudes or beliefs that shape the ways
family caregivers react emotionally and determine their quality of life (Mellon 2002;
Oberst et al. 1989; Skerrett 1998). An example of a positive appraisal is viewing
caregiving as an opportunity to make a crucial difference in the life of a loved one
and to reinforce family bonds (Mellon 2002). Caregivers with this appraisal are more
likely to feel gratified by their role and be more resilient handling its rigors over time.
An example of a negative appraisal is viewing caregiving as a form of entrapment
foisted upon obligated family members; caregivers who adopt this perspective are
more likely to feel burdened by their duties and become depleted and depressed in
the long term.
A common negative appraisal occurs when long-term cancer caregivers persis-
tently fear that the patient’s cancer is going to recur, increasing their stress and
detrimentally impacting their quality of life (Mellon 2002; Mellon and Northouse
2001). Living with uncertainty of the future because of such fears can detract from
the family’s capacity to focus upon non-illness-related needs. The family thus loses
its ability to generate hope. For example, Weihs and Reiss (2000) posted that fami-
lies dealing with long-term cancer care must move between being “living centered”
(i.e., focusing on all family members’ developmental needs) and “cancer-centered”
(i.e., devoting most of the family’s resources to the patient’s medical needs). Family
members who appraise each of the patient’s somatic complaints as a possible indi-
cation that the cancer is recurring will remain cancer-centered, thereby neglecting
the developmental needs of other family members.
The concept of caregiver appraisal has clinical utility. By devising a psychometric
instrument for measuring caregivers’ appraisals, Cooper et al. (2006) sought a means
of identifying early on those caregivers who were at greatest risk for eventually
experiencing distress. They also hoped to garner content-specific information about
the caregivers’ beliefs in order to design interventions and promote their well-being.
Mellon (2002) contended that caregivers’ negative appraisals could be countered by
assisting them in “finding positive meaning [to] reframe the cancer experience . . .
and tap into spiritual beliefs and practices . . . to enhance family quality of life.”
Mrs. Lucas’ personality has always been introverted and meek with a moderate
degree of neuroticism and relatively low levels of mastery. Her belief that God is un-
fairly punishing her and her husband is a type of negative appraisal called “negative
150 B. J. Jacobs
coping” (Koenig et al. 1998). It is associated with a greater likelihood of depres-

sion and poorer health. Training in coping techniques, such as relaxation exercises
and assertiveness, could decrease her propensity toward frustration and neuroticism
and help her to ask her family more directly for assistance. Speaking with a pastor
or healthcare professional about her cancer experience may allow her to shift her
perspective to a more positive one—e.g., God is testing, not punishing, her. These
interventions would have positive implications for her psychological adjustment to
the chronic medical situation.
Family and Social Support
A common finding of research on adjustment to chronic illness in general is that

family and social support—including assistance with activities of daily living, finan-
cial aid, and emotional support—improves the psychological status of most patients.
Similar results have been found with the effects of family and social support on indi-
viduals with cancer (Grassi and Rosti 1996; Northouse 1988). It is not surprising that
family caregivers of patients with a wide variety of acute and chronic illnesses also
experience increased well-being as the result of receiving family and social support
(Cameron et al. 2006; Raina et al. 2005). Halford et al. (2000) posited that when
cancer patients and their family caregivers feel mutually supported by one another,
the beneficial psychological effects appear to be greater for each of them.
Nijboer et al. (2001) found more complicated relationships between family, social
support, and caregiver well-being. Their research revealed “social support . . . is
beneficial for caregivers and mitigates the relation between stressors (in this case,
patient’s depression and negative caregiver experiences) and caregiver’s depression
to a limited degree” (p. 1036). In specific, the authors found that “less negative
interactions were predictive of a favorable caregiver outcome in the long term” and
that daily emotional support acted “as a moderator of the relation between negative
caregiver experiences and caregiver’s depression” (p. 1036), but they hastened to
add that caregivers do not perceive all support positively; it can be construed as a
negative influence. Well-intended support that fails to actually provide help to the
family members can actually increase caregiver psychological distress. For example,
advice from others may make caregivers feel as if they are being criticized for either
doing things wrong or not doing enough.
Cancer caregivers who are isolated from extended family members, friends, and
neighbors and therefore lack family and social support and may have a more difficult
time coping, especially over time. In the absence of helpful relatives or acquain-
tances, many of these caregivers come to rely upon healthcare and social service
professionals to a greater degree (see “Professional Support”). Even when willing
family members and friends are available though, there are several potential obstacles
to the use and ongoing benefit of the support they could provide.
Shifts in Family Roles. Conflicts can arise over the shifts in family roles neces-
sitated by the decreased functioning of the ill family member. For example, if the
primary breadwinner stops working for an extended period of time to undergo inten-
sive chemotherapy, then other family members may have to take jobs to earn money
in order to make up for the loss of income due to their loved one’s medical disability.
Some of these relatives may have difficulty adjusting to these role changes. They
may resist and resent them, particularly if the changes go on for many months and
threaten to become permanent, and thereby begrudge supporting the family in that
manner.
Breakdown of Communication. A second obstacle to mutual family support is the
breakdown of effective communication among family members. Effective commu-
nication in cancer caregiving generally consists of openly discussing details of the
disease, its treatments, and their impact upon the family in order to negotiate an
equitable family caregiving plan, but as Wellisch (1995) points out, many families
fighting cancer adopt a communication style that is more a “veil of silence” to protect
each other and themselves from provoking unbearable feelings of fear, anger, and
sadness. However, when family members do not negotiate openly in their dealings
with cancer or give voice to the feelings they have, they may fail to adequately ad-
dress problems, make decisions, or express the caring that is essential for weathering
the prolonged medical crisis.
Quality of Relationships. A third obstacle to the provision of support may be caused
by the quality of the relationships among family members and friends. This can take
numerous forms. In some families and social circles, there is too little love, commit-
ment, and cohesion prior to a patient’s diagnosis with cancer to serve as a prerequisite
for support once relatives and acquaintances are faced with the uncertainties and sac-
rifices of long-term cancer caregiving. Those who do agree to support the patient may
not have enough investment in his well-being to uphold their commitment throughout
the months and years in which help is needed. As a general rule, caregiving families
tend to become more socially isolated over time because friends feel uncomfortable
dealing with the effects of illness and consequently withdraw. Family members also
tend to focus more narrowly on illness concerns over time and cease reaching out
to others with whom they feel they have less in common. Rolland (1994) wrote
extensively about the negative changes in family relationships, or what he called
“relationship skews,” that undermine intimacy and closeness when medical issues
come to dominate the interactions among relatives. In an extended case study of a
young couple dealing with the husband’s lung cancer with brain metastases, Rolland
(1997) depicted how a patient’s development of cognitive impairments necessarily
skewed the power, decision-making, and capacity for emotional sharing between the
spouses.
Willingness to Accept Support. Caregiving family members experience varying
degrees of willingness to accept or resist support (Jacobs 2006). Caregivers some-
times express reluctance to ask for help or utilize aid that is offered because they do
not want “handouts”; they feel that caring for their family member is their duty and
believe that accepting support would be tantamount to shirking that responsibility. It
is frequently difficult to convince them that making use of family and social support
152 B. J. Jacobs
would likely help them conserve their energies and render them better able to provide
care to their loved one over time, especially in a long-term caregiving situation.
The fact that Mrs. Lucas’ sons and their families live at a distance from her and
her husband makes family support hard to come by for her caregiving efforts. This
is compounded by Mr. Lucas’ lack of appreciation for all that she does because
he is self-absorbed by his own cancer fears. However, Mrs. Lucas’ reticence about
accepting the help of their former congregants and other kinds of social support is
due to her own shyness and pride. By not reaching out more, she puts herself at
greater risk of developing caregiver distress over the long term.
Professional Support
There is a wide array of professional services available to family caregivers to sup-

port them in their care of cancer patients, including clinical services (e.g., physicians,
physical therapists, home health nurses and aides), social services (e.g., case man-
agement, Meals on Wheels, support groups, transportation programs, respite), and
legal and financial services (e.g., attorneys, financial planners). The many cancer
Websites, including those run by the American Cancer Society and the National
Cancer Institute, provide a general overview of what these services entail, but not
where to find them in local communities. Regional cancer centers are a better source
of local information and referrals for patients and caregivers. To the degree that can-
cer caregivers are able to avail themselves of professional support, they are likely to
cope better through their loved one’s on-going medical predicament.
A key issue for caregivers in taking advantage of these services is how to work
effectively with the available professionals. Good communication is crucial in this
endeavor. Caregivers often become concerned when professionals have not commu-
nicated fully or properly to them the ramifications of different treatment options for
the patient. For example, Seaburn (2001) described his anger when his father, dying
from metastatic colon cancer, was transferred from an acute care to a subacute unit
within the same medical center; he learned after the fact that the oncologist they
had worked with for years would not continue treating his father in the new setting.
It is not surprising that many guides for family caregivers include tips on how to
communicate effectively with professionals in order to form partnerships or teams
(National Cancer Institute 2006c; National Family Caregivers Association 2006).
The professional oncology literature includes many research articles on teaching
oncologists and nurses effective means of sharing medical information—such as
prognoses—with patients and their family members (e.g., Baile and Aaron 2005).
While Mrs. Lucas has limited family and social support, she has garnered greater
professional support. Her sons convinced her to hire a home health aide to come
to her home three mornings a week to help bathe and groom her husband. (She is
worried about the cost of this professional service, but is continuing it for the time
being.) She has a good rapport with her husband’s oncologist and feels that she can
call him at any time with questions. The nurses at the cancer center have always
been very friendly and supportive and have helped her maintain her morale.
Financial Strain
Many authors have noted that long-term caregiving often strains families’ finances
(Wagner 2004). Caregiving costs fall into three categories: out-of-pocket expenses for
medical services not covered by insurance, out-of-pocket expenses for nonmedical
services and items considered essential for the comfort of the ill loved one, and wages
lost because the caregiver must take a leave or time off from a job in order to provide
care.
For many families engaged in long-term cancer caregiving, the degree of financial
strain is significant (for those families of patients who need experimental drugs not
covered by any health insurance, the costs can be catastrophic). Yun et al. (2005)
found that loss of family income was most strongly associated with caregiver burden
and suggested that the best way of improving the quality of life of caregivers was
creating means of easing their financial strain (also see Bergamini, this book). In
contrast, Lauzier et al. (2005) found that the economic costs of long-term treatment
for breast cancer were substantial, “but were not the most worrisome aspect of
the illness during treatments.” Early studies estimated that the nonmedical costs
of childhood cancer patients plus family wages lost amounted to 25% of weekly
family income (Lansky et al. 1979) or 38% of gross annual family income (Bloom
et al. 1985). More recent research has looked at the indirect costs borne by families:
receiving treatments such as chemotherapy (Moore 1998); suffering side-effects,
such as toxicity (Calhoun et al. 2001) and pain (Fortner et al. 2003); falling into
special populations, such as breast cancer patients (Moore 1999) and the elderly
(Hayman et al. 2001); or using particular services, such as home care (Stommel
et al. 1993). These researchers have found expenses that are wide-ranging but, in
almost all instances, significant. When long-term cancer caregiving families use
their life savings to provide for a loved one, it is likely that the resulting economic
depletion will hamper their abilities to address other vital family needs.
Because Mr. Lucas had to retire early when he was diagnosed with multiple
myeloma and Mrs. Lucas gave up her part-time job as caregiving duties took up
her time, they are less well off financially than they had hoped to be at the time they
stopped working. Now living on a fixed pension while paying for nonmedical services
like a home health aide, Mrs. Lucas has to tap into her savings each month to pay
the regular bills. She is plagued with the constant worry that she and her husband
will run out of money before they both die.
Caregiver Distress
A major concern for family members is how the burden of long-term caregiving
affects their psychological well-being. The extensive research on the topic, conducted
primarily with the relatives of demented patients, has produced alarming results.
154 B. J. Jacobs
These caregivers suffer higher rates of depression and anxiety than same-age peers
who are not caregivers (Schulz and Martire 2004). These effects seem to persist even
after the patient has died and the caregiving has ended. In a study of surviving spouses
of patients with dementia, Robinson-Whelen et al. (2001) found that, though levels
of stress decreased after the patient died, levels of depression and loneliness remained
high for up to 3 years. They speculated that the chronic depression is largely due to
continued ruminations about the caregiving experience.
Research on the psychological effects of long-term cancer caregiving on family
members has yielded mixed results. Some authors concluded that while caregivers
suffer depression at the time of the patient’s diagnosis and treatments, the majority of
patients and family members return to premorbid levels of stress and mood (Grassi
and Rosti 1996; Kupst et al. 1995). In contrast, Given et al. (2004) found caregivers’
moods to reach threshold levels of clinical depression up to a year following the cancer
diagnosis. They also found that caregivers’ depression was most strongly associated
with the patients’ cancer- and treatment-related symptoms. A weaker association
was discerned between caregivers’ degree of depression and their relationship with
the care receiver. Depression was also to some degree related to the caregiver’s
current employment status. Employment outside the home was found to decrease
depression for spouse caregivers, but not for adult children taking care of a cancer-
stricken parent. Cameron et al. (2002) concluded that cancer caregivers are most
susceptible to emotional distress when their caregiving precludes their involvement
in valued activities and interests.
When she noticed that she had been sleeping poorly for months and seemed sad
much of the time, Mrs. Lucas made an appointment to see her family physician for
an evaluation. Her family doctor thought that she was mildly depressed in response
to the on-going caregiving demands and her decreased marital satisfaction. The
doctor made suggestions that Mrs. Lucas accept greater social support in order to
improve her mood. She also recommended that Mrs. Lucas return for a follow-up
appointment in 2 months; if Mrs. Lucas is not feeling better at that time, her physician
will consider recommending medication and/or counseling.
Future Needs/Directions
Practice
Even with the growing interest in cancer survivorship and quality of life issues,
the bulk of healthcare resources for cancer patients and their family caregivers is
still devoted to making the initial diagnosis and administering the early treatments.
Families need healthcare and social service professionals to be available to them long
after the early treatment stages. Living with the residual and late effects of cancer and
its treatments, as well as fears of recurrence, can be a drawn-out ordeal. For example,
many recent pediatric oncology articles have called for on-going “after cancer care”
programs to deal with the unique health needs and risks of childhood cancer survivors
(Bhatia 2005; Hudson 2005; Robison 2005). Such after-care programs for childhood
and adult survivors should use evidence-based guidelines (Hewitt et al. 2005) and
include the participation of family members to identify those most vulnerable to
developing difficulties over time. This is especially true for family caregivers of
patients with recurrent disease (Northouse et al. 2002).
There are a number of educational and clinical programs that have been tested
in recent years whose purpose is to prevent the development of coping problems in
family caregivers over the long term (Halford et al. 2000; McMillan et al. 2006).
Their preliminary findings suggest that they show promise, though much more study
and refinement needs to be undertaken (see Haigler et al. 2011, this series.).
To be attuned to the needs of families dealing with long-term cancer caregiving,

oncologists, nurses, social workers, and others need to be trained and made aware
of the many challenges that family members face. Making them cognizant of recent
research findings on the effects of long-term cancer caregiving is important. But pro-
fessionals also need practical experience with getting to know families over extended
periods and learning how their lives are broadly affected by cancer. To accomplish
this, professionals must have the interviewing skills to engage families on the level of
their appraisals/beliefs and emotions, not just to discuss biomedical concerns. These
skills are being taught in American medical schools and residencies today far more
extensively than a generation ago, as evidenced by the explosive growth of standard-
ized patient training programs and research on physician-patient communication. In
general, though, healthcare professionals need much more training in how to hear,
understand, and respond to cancer caregivers during the acute, chronic, and palliative
phases of the disease.
Research
It is heartening that empirical and qualitative studies are being conducted on can-
cer survivorship and long-term cancer caregiving with greater frequency and by
researchers from a variety of professional disciplines. Even more research on
cancer survivorship, conducted on a larger scale through National Cancer Institute-
sponsored Cooperative Groups, has recently been called for by the Institute of
Medicine (Hewitt et al. 2005). Specifically, the issue of quality of life is becom-
ing a more important focus of cancer research. One weakness of the current cancer
caregiving research is that much of it is being done on caregiving dyads—patient
and spouse—rather than families as a whole. Future research will need to explore
other family relationships to discern whether cancer caregiving has a different im-
pact on different types of relatives, as well as those of different ages, gender, cultural
backgrounds, degrees of geographic proximity, etc. The research should also further
156 B. J. Jacobs
explore which preventive interventions are truly effective in helping buffer family
caregivers from the potentially deleterious effects of long-term caregiving. Ulti-
mately, a consensus of research findings should become the basis for guidelines for
clinical practice to best serve patients’ family members.
Policy
In the past decade, two encouraging developments have affected policy concerning
cancer and caregiving. First, the National Cancer Institute’s Office of Cancer Sur-
vivorship has established itself as an increasingly powerful advocate for long-term
cancer patients, as well as a source of funding for research on survivorship and cancer
caregiving. Second, the National Family Caregiver Support Program, administered
through the U.S. Department of Aging, has disseminated over $100 million to lo-
cal support programs of caregivers of elderly individuals with any illness through
county-level Area Agencies on Aging. What remains to be undertaken are large-scale
support programs specifically for the long-term family caregivers of cancer patients.
Such programs should have educational, research, and advocacy components and
provide funding to replicate successful, innovative, local support programs on a
more widespread basis. They should seek to influence training standards for cancer
professionals and oncological practice to include more family support. They should
champion the cause of cancer caregiving in general so that no family member feels
completely isolated with her burden.
Concluding Comments
As the Lucas family has demonstrated, coping with long-term cancer can negatively
affect two core features of family life—the ability to generate hope for the future and
maintain supportive relationships among and between members and their commu-
nities. As such, the rigors and uncertainties of cancer, experienced over months and
years, can erode the basic mission of families—to foster all their members’ happiness
and growth. To the degree that we can counter fears and preserve relationships by
providing greater understanding and support, we can buttress families to withstand
cancer and deal with its aftermath.
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Chapter 9
Caregiver End-of-Life Care of the Person
with Cancer
Lodovico Balducci and Sheryl LaCoursiere
The road to caregiving can be very long. It is at times insidious; what one day may be
assistance with an activity of daily living may over time turn into an ongoing need.
Areas of needed assistance begin to accumulate; dependency begins to predominate.
In some persons, the evolution of the caregiver role may be sudden and brief, in others
gradual and prolonged. For the person with cancer, there may be much uncertainty
over a prognosis. Although there are points in time that indicate the direction of the
disease, such as blood tests and radiographic testing, in between there are only signs
and symptoms. These signs and symptoms can range from a continuum of positive
to negative responses. As events begin to accumulate, dependency on caregivers may
accelerate.
For the person at the end-of-life, the focus of caregiving is sharper. There are
questions that no longer need to be asked—the outcome is certain. Although everyone
in this world, including the ill person, must die, the transition from curative to
palliative care then accompanies a “death sentence” and allows caregivers a dedicated
time not only to spend time with the patient, but also to accomplish certain tasks that
accompany the impending loss of a loved one or significant other. This process can
be enlightening, giving the caregiver new insights into his or her relationship with
the cancer patient, and allow the working on “unfinished business,” but can also be
emotionally exhausting.
This chapter explores the caregiver of the patient at the end-of-life. First, the
history of caregiving, particularly in relation to patients who are dying, is examined,
followed by the current status of cancer caregivers in relation to practice, education
and training, research, and policy. A summary of what is known, what is not known,
and what is needed follows. Finally, future directions are explored.
L. Balducci ()
H. Lee Moffitt Cancer Center, College of Medicine, University of South Florida,
12902 Magnolia Drive, Tampa, FL 33612, USA
S. LaCoursiere
University of Massachusetts Boston and Yale School of Medicine,
42 Middleway East, Waterbury, CT 06708, USA

162 L. Balducci and S. LaCoursiere
Care, Healing, and Cure
Historically, the two goals of care—healing and cure—are mediated by the same
agent, the home-caregiver. It is important to remember that whether the goal is pal-
liative care or cure of cancer, successful outcomes are rarely obtainable without the
support of one or more persons willing and able to invest time and resources in the
physical and emotional support of the patient with cancer (Butow et al. 2000; Cas-
sileth et al. 1988; Ganz et al. 1993). How many successful palliative care outcomes
or cancer cures would be forgone were it not for a caregiver able to foster compliance
with a strenuous treatment schedule by providing transportation, home-care, timely
management, encouragement, and listening?
The distinction of healing and cure, a fortunate happenstance of the English
language highlights the separate, albeit interlinked domains of health care. Healing is
the acceptance of illness, the personal experience of disease, through the recognition
of a meaning to suffering and death, whereas cure refers to disease, a pathologic
alteration in bodily functions that would lead to death or disability if left uncorrected.
Unlike cure, healing is within everybody’s reach (Byock 1997): The diagnosis of
incurable and terminal disease represents a call to healing rather than to desperation.
The Cancer Care Recipient
Literature related to caregivers of the patients who are terminally-ill began to ap-
pear with increasing frequency in the early 1990s. Two predominant themes are
represented in this early literature. These are related to the psychological status of
caregivers and the environment in which the caregiving is taking place. A summary
of this literature is indicated below.
Psychological Status
The concept of concern for caregivers, even those who are not taking care of patients
with cancer, was documented in the early 1990s (Charlton 1992). Concern for the
quality of life of caregivers encompasses care tasks as well as caregiver experiences,
including burdens as well as positive aspects (Nijboer et al. 1998). In the first 4 weeks
of caregiving, quality of life for caregivers is highest in social well-being. However,
it is lowest in physical well-being (McMillan 1996). As time moves on, caregivers
tend to adjust. Psychosocial status tends to improve in caregivers from the beginning
point of caregiving to 3 months of caregiving. At this point, the effect levels off, with
psychological well-being remaining the same after 6 months (Jepson et al. 1999).
Quality of life can also be improved by intervention (Smeenk et al. 1998).
Environment
Palliative care, or care for a known patient who is dying, can take place in a hospital
as well as home environment. The majority of caregivers were found to be family
9 Caregiver End-of-Life Care of the Person with Cancer 163
Fig. 9.1 The Brown and Stetz labor of caregiving model. (Brown and Stetz 1999)
members (96%) and female (72.1%; Emanuel et al. 1999). Part of the task of caregiv-
ing is negotiating with others to coordinate care for the patient, including transport,
personal care, and housework. There may be a conflict with patients’ wishes, leading
to a call to assess caregiver needs independently (Grande et al. 1997).
At the end of the 1990s, a model of caregiving emerged. Entitled “The Labor
of Caregiving Model,” the framework will be used to explain the following section
(Brown and Stetz 1999).
Caregivers of the Dying Cancer Patient: Current Status
Brown and Stetz: A Theoretical Framework That Can Be Used to

Guide Practice, Education and Training, Research, and Policy
As the millennium occurred, the literature on caregivers rapidly expanded. There are
many ways to view caregiving. The Brown and Stetz Labor of Caregiving Model
(1999) is particularly helpful in that it can be used to guide not only practice, but also
education and training, research, and policy related to caregivers of patients who are
dying. The framework is explained next, and its applicability to the current status of
caregiving is outlined in detail.
As shown in Fig. 9.1, the model outlines four phases that the caregiver of a
patient who is dying goes through: Becoming a Caregiver, Taking Care, Midwifing
the Death, and Taking the Next Step. These phases are explained below, and theory
integrated. The majority of this chapter concentrates on the work of phase II, Taking
Care.
Becoming a Caregiver. The first phase of caregiving has four themes: Facing the
Present, Choosing to Care, Looking to the Future, and Developing Competency. In
becoming a caregiver, an individual goes through a process not unlike a novice in
any job. Initially, the situation is evaluated: There is a person who is dying, and
the caregiver-to-be chooses that he or she is the most appropriate person to provide
care, or if the person requested by the care recipient. The caregiver then attempts to
look ahead and determine what tasks the patient might need assistance to manage.
Then, either formally or informally, the caregiver develops expertise in needed areas
(Brown and Stetz 1999).
Taking Care. The second phase of caregiving has seven themes: Managing the
Illness, Facing and Preparing for Dying, Managing the Environment, Coming to
Know Ones Own Strength, Personal Suffering, Responding to Family Issues, and
Struggling with the Health Care System. The caregiver must supervise the patient’s
experience of illness, as well as make plans for the dying process. The physical envi-
ronment as well as the informational environment must be managed—arranging the
living space, seeking information, and coordinating with others. A realization pro-
cess occurs in which the caregiver begins to know his or her own strength; however,
personal suffering also occurs as the caregiver’s personal resources are overwhelmed
at the same time that the caregiver must face an anticipatory grieving process and
deal with family and the health care system itself (Brown and Stetz 1999).
Midwifing the Death. The third phase of caregiving has two themes: Waiting and
Doing and Hoping for a Good Death. In this phase, the caregiver keeps busy with
the tasks of caregiving, and waits for the end to come. New skills may need to be
learned, for instance, pain control. The caregiver’s focus shifts from quality of life to
quality of death, and encompasses wishes such as being present at the last moment.
Caregivers may expect higher performance of themselves at this time, and wish to
“do things right” (Brown and Stetz 1999).
Taking the Next Step. The fourth and final phase of caregiving has four themes:
Experiencing Relief, Tying Up Loose Ends, Dealing with Regrets, and Moving Ahead.
The caregiver may feel relief of the freedom from responsibilities, but this may be
overshadowed by the grieving process. At the same time, unfinished business must
be taken care of, particularly financial management of the now deceased patients’
affairs. The caregiver must deal with regrets for situations they might have handled
differently. Finally, postbereavement adjustment occurs, and the caregiver looks
ahead to the next phase of his or her life (Brown and Stetz 1999).
Practice
In practice, the process of caregiving to the patient who is dying begins with a di-
agnosis, in this case terminal cancer. In the Brown and Stetz (1999) model, this
would correspond to the first stage, Becoming a Caregiver, and proceeds into the
second stage, Taking Care. The definition of terminal disease is elusive: for hospice
purposes, terminal disease is generally considered a disease with a life expectancy

of less than 6 months for which the only form of treatment is symptom management
(Iwashyna et al. 2002). As a general principle, patients with terminal cancer may be
expected to experience a progressive decline in their daily function as well as symp-
toms related to their cancer, the most distressing of which are pain and dyspnea. They
will also experience a wide gamut of emotions from depression to anger to despair.
They will require the support of other individuals for carrying on the instrumental
activities of daily living (IADL) first and later, the activities of daily living (ADLs,
Grassi and Rosti 1996; Ventafridda et al. 1991).
Under ideal circumstances, the patient becomes able to find a meaning to the
approaching death by viewing it as an occasion to filter those life experiences that
have had a lasting impact and crystallize life into a unique and imperishable construct.
In addition, the approaching death may be an occasion to discover the affection and
the devotion of friends and relatives and to unveil a new and lasting scope of intimacy.
This process may take weeks to months and of necessity involves individuals close
to the patient and the patient’s household. The patient’s “terminality” becomes the
center of the family activities, interests, and reactions. In the rare condition of a well-
adjusted family, the members of the household react in a unity of sorts to support each
other and grow together through this painful family trajectory experience (Balducci
et al. 1987). In most cases, however, a terminal disease becomes a cause of distress
that may exacerbate preexisting conflicts. For instance, the highest percentage of
divorces is found among parents whose children die after a prolonged admission in
the pediatric intensive care unit (Miller 1996).
From this picture, the multiple roles of the family caregiver in the management
of terminal cancer emerge. As shown in Table 9.1, there are five key roles of the
caregiver: coordination, decision, representation, mediation, and compassion.
In addition to the roles of the individual caregiver, the demography of caregiving
must also be considered. Looking at caregiving from a family perspective, within
the traditional extended family, a spouse or a married daughter typically assumes
the caregiving role (Balducci et al. 1987). The spouse is often an elderly person
with health problems of his or her own, while the married daughter is distressed by
the competing demands of her own family, her job, and the sick parent. While the
family model is evolving and encompasses couples without children and unmarried
individuals as well as same-sex couples, the basic model of caregiving and its inherent
problems may be applied to each household. Perhaps the main change from the
extended family is not so much the different family structure as it is the scarcity of
helpers. Thus, the caregiver may find himself or herself in the situation of carrying
on the majority of the physical work.
Caregiving may also be considered from a risk/benefit perspective. Under the
best of circumstances, the caregiving experience may help the caregiver to discover
a vocation endowed with unique talents that had previously remained undisclosed.
A profile of the caregiver is needed. For certain personalities and personal situations,
caregiving may be a source of unsurpassed satisfaction. Common examples may
include: (a) chronically depressed individuals who may, because of their sensitivity,
be able to better relate to a dying person, and who are very comfortable in dealing
Table 9.1 Key roles of the caregiver. (Weitzner et al. 2000)

Role Key components
Coordination The regulation and integration of various aspects of care received by the patient.
This could include, for instance, who is going to take the patient for a walk,
feed the patient, entertain the patient, address issues of bequeath and in general
make sure that all of the patient’s physical and emotional needs are addressed.
Many family members and friends are willing to contribute time and resources
to the patient’s welfare. Without coordination, however, these efforts may be
wasted and may even generate conflicts within the family. The caregiver has
the task to utilize, at best, each person’s talents at the more appropriate times
Decision Terminal diseases involve painful choices, spanning from the decision to use or
not use life-supporting treatment, to the need of balancing pain relief and clarity
of consciousness, to the management of intercurrent infections or unexpected
delirium, to funeral arrangements. While all family members should be able
to express their view of these issues, the caregiver should be able to integrate
different viewpoints and channel different trends toward a consensual solution.
The decision not to use the treatment is just as challenging, or may be more
challenging than the decision to use such treatment. The decision-maker role
interdigitates very well with the next two roles, representation and mediation
Representation The communication with health care providers may be complicated by mul-
tiple and diverging goals of different family members. In the absence of a
representative of the family, the cacophony of discordant sounds may paralyze
the delivery of health care. The ideal caregiver should be able to convey the
messages of the family to health care providers as well as the messages of
providers to the family
Mediation It is self-evident that mediation of conflicts is the clue to consensual decisions as
well as to effective representation. While the most common conflicts are those
within the immediate family, the caregiver’s scope may reach out of these
boundaries, to the conflicts with the health care providers and to the conflicts
within the private domain of each family member. It is very common, for
example, that the spouse of one of the patient’s children or siblings may grow
irritated and resentful for the time and resources the spouse invests in the ill
relative. Avoidance of an adversarial reaction by weaving together competing
requests into a plan of action agreeable to all parties may make the care of
the patient more effective and prevent long-term consequences of the disease,
which hovers on the future of each family member
Compassion Compassion should color each of the caregiver’s activities. In the absence of
compassion, even an intervention provided by the most skilled person will be
mistrusted and go unheeded. In addition to the patient’s discomfort and fears,
compassion should embrace those members of the household that are unable to
accept the patient’s death or to conciliate the responsibilities toward the patient
and those toward their own work and families. As compassion is the necessary
background of all effective caregiving interventions, it is important to highlight
the origins of the word (Patterson et al. 2002). Compassion derives from the
Latin cum pator, meaning “to suffer together.” Implicit in the word, then, is a
congruence with the sufferer’s situation, which means an effort to understand
the origin of their discomfort and fear even when they are not our discomfort
and fear. Perhaps the most effective manifestation of compassion is then the
ability to listen to the patient or the distressed family members, without being
judgmental, and when it is appropriate, offering solutions that are congruent
with the values of the person that is listened to. Occasional eye contacts, warm
touch, short comments indicating that the message is understood and accepted,
may go a long way in making compassion operational
Table 9.2 Benefits of Satisfaction

caregiving. (Haley 2003) Intimacy
Social reward
Personal growth
Self-esteem
with a person at the end-of-life who is shunned by the joyful companions of better
days; (b) the nurturing individual looking for an object on whom to bestow their
riches; or (c) the estranged spouse able to find in death a new occasion for intimacy.
The benefits of caregiving are listed in Table 9.2.
In assessing the potential for caregiving in each situation, two principles should
be followed:
• Caregiving at its best is a vocation.
• A person incapable of being a caregiver is not necessarily a callous or insensitive
person. Such a person is not very different from a person who is unable to enjoy
the symphony because he or she lacks music appreciation.
The best balance is obtained when the caregiving talents of a person are acknowledged
and praised while those without these talents are co-opted into the management of
the patients to the best of their ability under the direction of the caregiver.
Caregiving may provide new important clues to the significance of intimacy and
in the meantime vindicate those persons who had lifelong difficulty with sexual re-
lations. The focus on physical sexuality of our culture has privileged individuals
who feel very comfortable with their own bodies. However, at the same time, it has
emarginated those searching a more global, far-reaching form of intimacy. Care-
giving of the dying may restitute full honor and meaning to this form of intimacy
that does not hinge on sexual intercourse. In ministering to a dissolving body, the
caregiver has the opportunity to respect and honor human vulnerability and in doing
so, to become aware that intimacy is foremost a form of contemplation, a spiritual
experience immortalized by the “Pietas” of the Renaissance artists. This contact with
our spiritual nature is the quintessential form of personal growth. It may also provide
the caregiver with lasting self-esteem: Spirituality is a statement that we are worthy
for whom we are, not for what we do.
Last, but not least, social reward plays an important role in the support of the
caregiver, as validation of the importance and uniqueness of a person’s vocation and
ministry.
The risks of caregiving have been well illustrated in the literature (see, for example,
The Multiple Dimensions of Caregiving and Disability, this series). Another example
is found in the Alzheimer disease literature, where caregivers are noted to experience
earlier mortality and higher rate of depression than a population of the same age
without the caregiving burden. Whereas the problems with Alzheimer disease may
be extreme, it represents a useful frame of reference for the risks of caregiving in all
chronic and terminal diseases. The risks of caregiving are listed in Table 9.3.
Table 9.3 Risks of Depression

caregiving. (Haley 2003) Mortality
Social isolation
Low self-esteem
Marital disruption
Loss of income
In addition to depression and potential personal mortality, the caregiver may suffer
the same social isolation as the ill person. The same friends and family members
that avoid the thought of death and the interaction with the person who is dying
may end up skirting and dismissing the person’s caregiver. This results in a vicious
cycle of depression, more isolation, and more depression. A common side effect
of this cycle is the disruption of personal relationships and a development of low
self-esteem, guilt, and inadequacy. Caregivers may also risk marital disruption and
loss of income because of time spent away from the spousal relationship or work.
Education and Training: Caregiver Interventions
In looking at the Brown and Stetz (1999) model, education and training encompass
the first three phases of the model, beginning at Becoming a Caregiver, continuing
into Taking Care, and progressing through Midwifing the Death. Education and
training in caregiving must encompass not only health professionals, but also family
caregivers.
In the preceding discussion we have established that:
• The caregiver is essential to the healing of the person who is terminally ill.
• Caregiving involves unique opportunities and rewards.
• Caregiving involves serious risks to the physical, emotional, and social welfare
of the caregiver.
It behooves health care professionals to nurture caregivers as a unique health resource
through education that minimizes the risk and maximizes the benefits of caregiving.
Interventions that may be helpful with caregivers of the dying patient fall into four
categories: Information, Social Reward, Social Support, and Personal Awareness.
These areas are susceptible to modification, thus health professionals are in a unique
position to assist the caregiver and, thus, ultimately benefit the patient. These areas
will be explained below.
Information. Information is the backbone of effective caregiving and the initial
bulwark against discouragement and burn out. The principal components that are
necessary in caregiver education include information on the course of the disease,
the goals of management, available resources, potential family reactions, and conflict
management as well as stress management.
A major cause of concern for a caregiver who had not been previously exposed
to terminal illness and death are the unknowns of the situation. “Unknowns” may
take the form of many questions, particularly whether the patient is going to expe-
rience pain and other forms of discomfort, what is going to be the mechanism of
death, in which situations it is appropriate to ask for medical help, and what kind
of reactions the patient is going to manifest. It behooves the health care provider
to assure the caregiver that the patients will not be in pain, that other forms of dis-
comfort, especially shortness of breath, may be soothed by opioids, and to visit
different possible death scenarios. In the case of diffuse liver metastases, renal fail-
ure, or hypercalcemia, it is reasonable to anticipate a peaceful outcome, through a
more or less prolonged coma, generally devoid of pain. In the case of lymphangitic
lung metastases or recurrent superior vena cava syndrome, it is helpful to describe
the potential shortness of breath that may be ameliorated by oxygen, steroids, and
opioids. When the possibility of intestinal obstruction exists, therapies that would
potentially reduce the risk of obstruction should be explored, and both surgical and
nonsurgical palliative options outlined. This practical description of the mechanisms
of death provides the caregiver with a sense of control, and at the same time enhances
confidence in the health care provider. In any case, the general attitude one wants to
convey is that the patient and the family will not be abandoned, and that symptom
management is taken as seriously as curative treatment by the health care provider.
In addition to the description of death scenarios, it may be helpful to anticipate com-
mon and distressful reactions that may precede death. For instance, performance of
apparently meaningless movements by the patient, such as “picking at things” is a
common cause of concern for the family member. It may be helpful for the profes-
sional caregiver to explain to the family caregiver that these movements are common
occurrences, do not seem associated with any discomfort, and are probably a form
of rumination during which the patient is progressively getting ready to die. Telling
caregivers and other loved ones that they may express their support by touching the
patient may prevent needless anxiety and frustration.
At the same time that the process of death is illustrated, practical and realistic
goals of care should be outlined. In addition to supporting the patient’s welfare,
these goals confirm the caregiver’s role by providing meaning and expectation. Of
course, the goals of care vary with the stage of the terminal disease. When the patient
is still ambulatory and the cognitive function is intact, it is important to maintain
the patient integrated as much as possible in the usual social context. Daily exercise,
common meals, exchange of ideas, and sharing of social events, such as religious
celebrations or artistic performances, are simple and effective ways to promote the
socialization of the patient. However, even in the last phase of the disease, active
interventions are necessary to promote the three freedoms of the patient at the end-
of-life: freedom from pain, freedom from pressure ulcers, and freedom from tubes
(Byock 1997). Many nonmedical and even medical people recoil to the idea of not
feeding the patient. Disagreements may occur within families, and vary by culture
(Phipps et al. 2003).
Awareness of the resources available to care for the patient is also important both
to the delivery of effective care and to the relief of a sense of helplessness that affects
many caregivers at different times. The exploration of these resources may include
three parts:
• A careful description of procedures, for example, whom to call when the patient
dies.
• A visit to the formal support network, including hospice, home-care, church-
based and other volunteer organizations, to establish a clear outline of what they
can provide.
• An examination of the patient’s and caregivers’ informal support network, based
on family and friends. This is probably the best occasion for the caregiver to dis-
tribute the burden of caregiving among family members according to each one’s
special talents and availability. This distribution is essential to assure common sat-
isfaction and a consensual approach to the management of terminal disease, while
at the same time preventing or minimizing the caregiver burden. For example, a
patient’s child or sibling that works night shifts may stop by for breakfast in the
morning before going home; the housewife with small children may dedicate one
of more nights a week when her spouse is at home and able to provide childcare;
the busy executive may shoulder the largest portion of the cost, and so on.
Anticipation of the reactions of different family members, with basic instructions
about conflict management, is helpful to prevent painful arguments within the family.
The caregiver should be aware of the occurrence and manifestations of denial, anger,
bargaining, and escape (Knuti et al. 2003), to accept his or her own reactions, and
to avoid passing judgment on siblings that appear callous, aloof, or discourteous. A
caregiver who succeeds in not having unpleasant reactions of other family members
personally will be in an advantageous position to effectively discuss the patient’s
needs with family members, and thus to enlist their assistance. At the same time, it is
important for the caregiver to communicate personal needs to other family members
to avoid being taken for granted, and mainly to make sure that these needs are being
provided for in a timely manner. Among these, the need for respite, personal time,
and family time are paramount. It is also important that the caregiver be able to
discuss his or her own financial situation, ensure that suitable financial arrangements
are made in a timely manner, and periodically review the arrangements.
Ideally, the health care provider, such as the physician or hospice nurse, should
meet periodically with the family to assess the status of each member and, if neces-
sary, act as an advocate for the caregiver. In addition to emphasizing respite as well
as personal and family time, stress management should hinge on caregiver personal
values. Caregivers may find important inspiration in religious beliefs (Patterson et al.
2002). Caregiving may have different representations in different religions, for in-
stance, for the Christian assisting the patient, it may represent the comforting of
Christ; for the Jew, it may suggest a good deed; for the Muslim, it may suggest
a religious intervention. Even in the absence of a specific religious belief, a spiri-
tual perspective that embraces each human life as unique colors acts of caregiving
with the sense of highest human mission. The professional caregiver or health care
provider should not shun the discussion of religion with the caregiver, and should be
able to build the caregiver’s comfort by showing congruence with and understanding
of the caregiver’s beliefs.
Social Reward. Reinforcement is the most powerful mechanism to foster compliance
with any human activity, from taking medications to persist in one’s profession or in
one’s family (Foley et al. 2002). In the case of caregiving, social reward is a critical
form of reinforcement, as it provides the caregiver with status in a time of self-doubt.
It behooves all family members to:
• Recognize the role of the caregiver in the healing of the loved one close to death.
• Acknowledge that the caregiver is answering to a special vocation, and is endowed
with unique talents. A common but very unfortunate attitude that may undermine
caregiving and plunge the caregiver into irreversible depression, is to consider
caregiving a default choice for the least valuable member of a household. For
example, it is common to consider a childless or unmarried child of the patient as
the natural caregiver, assuming that person’s time and energy are not as important
as those of other family members with family responsibilities.
• Acknowledge the need for support, both emotional and financial, by the caregiver
and compensate the caregiver in the most appropriate way for the investment of
resources. Probably, the best way to accomplish that is for family members to
meet periodically with the caregiver and to allow that person to express needs
and concerns. Under the best circumstances, this experience is a powerful way to
build a strong and lasting relationship between family members, and to provide
meaning to being a family.
Religious ministers should be educated so that they may play an important role in
rewarding caregivers, especially those who are supported in a faith that highlights
caregiving as a form of ministry, by expressing the appreciation for the caregiver as
well as concern for the caregiver’s welfare, and by being available to the caregiver on
short notice for counseling and listening. Last, health care providers may be powerful
agents of caregiver rewards. In the management of terminal patients, the education
of health care professionals should include reminders to never miss an opportunity to
express admiration for the dedication and performance of the caregiver and concern
for caregiver burden. This “less-than-a-minute-a-visit” statement of allegiance is a
strong mechanism of caregiver reward.
Social Support. Social support is the concrete manifestation of allegiance to the
caregiver, as already stated in different sections of this chapter. As a summary, in the
context of the patient who is dying, social support may include:
• Sharing responsibilities for the management of the patient’s symptoms; for this
purpose both professional and family support networks are involved.
• Providing the caregiver with respite time, family time, and personal time.
• Financial reward for the loss of income.
The importance of social support cannot be underestimated as an intervention, par-
ticularly when combined with other interventions such as information and social
reward.
Personal Awareness. Personal awareness is the most elusive, and at the same time
most effective area of intervention education. Clearly, success of caregiving is assured
only when the caregiver feels fully validated by caregiving. Promotion of personal
awareness behooves everybody who interacts with the caregiver, including health
care providers, family members, friends, ministerial staff, and even occasional ac-
quaintances. While the approaches may vary, the areas of intervention should always
include both the feelings and the beliefs of the caregiver.
Special emotional conditions, which can make social interactions difficult, may
actually facilitate caregiving of the person at the end-of-life. This is an excellent op-
portunity for emphasizing the role of the “wounded healer” (Laskowski and Pellicore
2002), which explains how personal wounds may provide the experience and empa-
thy necessary to heal other individuals. In the care of the dying, the same wounds
that have handicapped the caregiver’s daily life may become effective healing assets.
This reverse perspective in the face of death expands and deepens the concept of
normality to embrace all living experiences, including death and dying. Depressed
individuals may actually be more comfortable with the thought of death than the
general population: As with other illnesses, their very disease may give them an
edge when dealing with patients, as they are not repulsed by the proximity of death
(Gilliam and Steffen 2006). Caregivers craving a nonsexual intimacy may find their
aspirations vindicated in the care of the dying. In caregiving, intimacy consists of
psychological tasks such as compassionate touch and general sharing of vulnerabil-
ity, as well as physical tasks such as wound care and management of incontinence.
The thoughtful spectator of this challenge should congratulate the caregiver for the
unique assets they bring to the situation that, for some, will validate a lifetime of
isolation and sense of inadequacy.
Caregiving is also an occasion to validate one’s beliefs by establishing a much
needed connection between these beliefs and the practice of everyday life. Irrespec-
tive of personal religious beliefs, caregiving of the dying is a unique opportunity for
manifesting human respect in action. The actions of the caring caregiver communi-
cate the beliefs that disease and death, short of representing a waning of human life,
represent a unique experience to be treasured as any other human experience.
In practice, the last step of the Brown and Stetz (1999) model, Taking the Next
Step, may be where caregivers have the least support available to them, particularly
from a health professional point of view. Because the raison d’etre of caregiving,
the patient, is now deceased, the caregiver is in effect an ex-caregiver. In order to
allow anticipation, caregiver education may include the presence of this stage, and
what the caregiver might expect, such as the common emotions of relief and regret.
Thus, caregiver education and training follows from the tasks at each stage of the
model: Becoming a Caregiver, Taking Care, Midwifing the Death, and Taking the
Next Step. Referral for additional services may be needed for those caregivers at risk
for ongoing and prolonged grief.
Research
With the exception of the Brown and Stetz (1999) model, the majority of the current
research related to caregiving is atheoretical. There is a schism between what is
hypothesized about caregiving and what has been tested. Since the beginning of the
millennium, caregiving literature has focused on the experience of the caregiver as
well as their informational and support needs.
The first area of research, the experience of the caregiver, shows multiple lenses
by which the overall trajectory of caregiving, its chronic and consuming nature, and
the daily life of the caregiver can be viewed (Pasacreta et al. 2000). The experience of
caregiving can produce distressing emotions that can affect a caregivers’ mental and
physical health (Flaskerud et al. 2000). Caregivers of persons with terminal illness
are at high risk for clinical depression (Carter and Chang 2000).
The experience of the caregiver may change depending on the rapidity of patient
illness. Caregivers in Sweden perceived a more meaningful involvement in caregiving
when there was more time to interact with institutional staff and an opportunity
for respect and connection had time to develop (“involvement in the light”), as
opposed to those with a rapid illness or sudden course of death (“involvement in the
dark”; Andershed and Ternestedt 2000). The experience of caregiving may be more
satisfactory when a loved one dies at home, particularly when there is access to a
palliative care program (Singer et al. 2005). In widows, research in Sweden indicated
that a short awareness of the time of potential death may give rise to later anxiety
and use of tranquilizing drugs (Valdimarsdottir et al. 2004).
Caregiving also involves the perception of burden. There may be burdens related
to time and logistics as well as to physical tasks. There are emotional burdens and
mental health risks as well as physical health risks (Rabow et al. 2004). In one study,
the perception of burden was most alleviated by in-home nursing care, followed by
family physicians, medical specialists, housekeeping, and religious support (Brazil
et al. 2005). Although there is a perception of the caregiver as the primary responsi-
bility bearer (Wennman-Larsen and Tishelman 2002), the experience of burden has
also been seen as an opportunity to generate strong positive emotions, such as the
expression of love (Grbich et al. 2001).
The second area of research, the informational and support needs of the caregiver,
has been well documented. For instance, although one might suspect that the burden
of caregiving might increase over time, Pasacreta et al. (2000) found that in persons
that attended a family caregiving education class, the perceived burden of caregiving
was not increased even when tasks increased in intensity. (For additional information
on caregiver support, see Educationand Support for Caregivers, this book.)
Caregivers need to be informed of what issues may arise in the course of caregiv-
ing. Since caregivers provide an average of 55% of needed care, communication is
the primary support needed (Jansma et al. 2005). For instance, concerns may arise
as to the amount of information that may be disclosed to the caregiver, particularly
regarding end-of-life issues, and when negotiating family dynamics (Clayton et al.
2005). Information on the accessibility of support services is paramount (Grande
et al. 2004), as well as potential role strain from both formal and informal support
(Sherwood et al. 2004). The information provided must be both comprehensible and
manageable (Milberg and Strang 2004). For support itself, in descending order, the
most desired services are housekeeping, caregiver respite, in-home nursing care,
personal support workers, and self-help/support groups (Brazil et al. 2005).
Obviously, the two main categories of research, the experience of the caregiver
and the informational and support needs of the caregiver, are intertwined. The actual
experience of the caregiver gives rise to informational and support needs, and the
process of meeting those needs is part of the experience of caregiving. In turn,
research informs policy.
Policy
Caregiving cannot be effectively promoted until society consistently acknowledges it

as a meritorious societal endeavor. Current legislation is not adequate, and caregivers
are disproportionately represented by traditionally vulnerable classes of people:
women, the unemployed, and those without adequate insurance. When employed,
caregivers miss more days of work than noncaregivers. Thus, they typically have
health as well as financial vulnerability. At the federal level, there is limited policy
support (Doheny 2006). However, some support is provided by the Family and Med-
ical Leave Act of 1993 (Bell and Newman 2003; U.S. Department of Labor 2006)
and the Family Caregiver Support Program under the Older Americans Act of 2001
(U.S. Department of Health and Human Services 2006).
Medicaid and Medicare are inadequate in their access to health care for caregivers
and their families (Ho et al. 2005). Polices to expand Medicaid and Medicare would
improve caregivers’ ability to access health care for themselves and their families, as
well as help eliminate the financial strain of going without health insurance. Although
there is social reward for caregiving, there is little societal recognition.
Summary: What Is Known, What Is Not Known, and What

Is Needed
In general, the numbers of caregivers are ever-increasing. It is known that caregivers

of dying cancer patients face challenges that are both similar to and different from
those experienced by other caregivers. Many times, caregivers of dying cancer pa-
tients are called on to respond to urgent needs, with a total course of illness lasting
days or weeks. On the other end of the continuum, dying can be a lingering process
and take place over months or years.
What is not known is the extent of the difference of these experiences, and the
contextual environments in which they occur. For instance, how does the caregiver
experience differ when providing care for a dying cancer patient in contrast to an
individual with congestive heart failure? What are the essential “core” caregiver
tasks, and which are illness-specific? More research is needed in both quantitative
and qualitative domains.
Future Directions for Caregivers of Dying Cancer Patients
Applicability of Current Frameworks
The Brown and Stetz model (1999) is very applicable to the experience of caregivers
of persons with cancer. It describes and acknowledges the unique stages that care-
givers must pass through. Because it was developed through qualitative interview
methods, it reflects the commonality of caregiver experiences. The four stages, Be-
coming a Caregiver, Taking Care, Midwifing the Death, and Taking the Next Step,
encompass the “life-cycle” of a caregiver.
However, if one is to also examine societal forces, a caregiver model that incor-
porates factors external to the caregiving situation should also be examined. For
instance, a more comprehensive model might include aspects of education and
training, sociocultural factors, and policy. If the status of caregivers and their ac-
knowledgement is to rise in the minds of policymakers, more formal programs should
be established that present structured curricula.
Practice, Education and Training, Research, and Policy
In practice, “caregiving” is gaining momentum as a concept in the American vocab-

ulary. Although it is not yet ubiquitous, the development of organizations such as
the National Family Caregivers Association has begun to increase public awareness
of the role of caregiving. However, penetration of the concept into the populations
most affected, and self-identification as a caregiver, will probably take some time.
In addition, knowledge of laws and policy related to caregiving is slowly diffusing;
however, more public awareness is essential to enable families to assume these added
responsibilities. Although education and training opportunities are increasing for
caregivers, more dissemination needs to be done about the concept of caregiving
itself, and how to actually navigate the role and circumstances that might occur.
In research, more work is needed on a national as well as individual level. On a
national level, aggregate data are needed to inform policy. What are the characteristics
of caregivers from different regions of the United States? Are their needs different?
What are the public health implications? What models can be developed that include
the concept of community? On an individual level, more research is needed on the
caregiver of patients at the end-of-life, and the experiences that caregivers might
encounter. Together, the data should be carefully scrutinized for potential impact
on policy. National trends in cancer survival should also be considered, for as the
number of survivors increases, trends may become apparent in the length of dying
trajectories, thus impacting the work of the caregiver.
In conclusion, the caregiver is the agent of healing for the patient who is dying.
As such, the caregiver represents a unique resource that cannot be substituted or
surrogated. It behooves each individual, as well as society in general, to support
this precious and scarce resource. Health care professionals, patient advocates, and
religious ministers all have a vested interest in preserving and nurturing the caregiver.
Maximizing the benefits and minimizing the risks of caregiving is the winning
strategy. Information, social reward, social support, and promotion of self-awareness
are interventions that may ease the burden of caregiving and enhance its gains. At the
same time, a societal commitment to not penalize the caregiver with loss of health
and income is essential. In the end, end-of-life care by caregivers of individuals with
cancer is complex, and involves many layers of society, from the individual to the
family and community.
Caregivers providing end-of-life care must be examined from many dimensions,
in order to fully understand their evolving role in today’s society. This chapter has
attempted to address some of these complexities that have affected the past and
present, and will undoubtedly impact the future. In order to ground the context of
care, the chapter first examined the history of caregiving to individuals at the end-of-
life. This was followed by the current status of cancer caregivers as both resources
and participants in end-of-life care using the Brown and Stetz (1999) model. The
model was used as a guide in relation to not only practice, but also education and
training, research, and policy. Following this, a summary of what is known, what is
not known, and what is needed in “caring for the caregiver” was examined. Finally,
future directions were explored, as well as the impact of caregiving on a number of
levels, from individual to societal to the policy arena.
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Chapter 10
Advances in Cancer Care Impacting
Familial Caregiving
Victoria H. Raveis
More than three decades ago, the initiation of the National Cancer Act in 1971
set in motion a comprehensive national plan to reduce cancer-related morbidity and
mortality (Dunn 2002). Through the years, this act has been reauthorized and updated
to reflect emerging developments and priorities in cancer care and research. The
activities that have been initiated through this act have contributed to the current
developments in the care and management of cancer and influenced the families
facing current caregiving challenges today.
Recent developments in detecting, diagnosing, treating, and managing cancer
have contributed to reduced disease progression and increased survival. Overall,
the cancer death rate has decreased 1.1% per year between 1992 and 2001 (Jemal
et al. 2006). The current 64% 5-year relative survival rate for cancers represents a
statistically significant increase in the last 20 years (American Cancer Society [ACS]
2006). This translates into over 10 million persons currently living who have been
diagnosed with cancer (Hewitt et al. 2006).
As in other illness situations requiring informal support and assistance, the fam-
ily is integral to the care and support provided to persons receiving treatment for
cancer (Schumacher et al. 2000; see reviews by Northouse 2005; Kotkamp-Mothes
et al. 2005). Families face a shared set of psychosocial challenges imposed by their
relative’s illness: coping with uncertainty, dealing with the losses and changes en-
gendered by the illness, and adjusting to the caregiving situation (Raveis 2007).
Caregivers are challenged in varying degrees in each of these areas at every phase of
the illness.
This chapter will focus on a number of important ways that advances in under-
standing cancer and the developments in its treatment and management have not only
impacted the structure and process of families’ cancer caregiving, but also affected
the positive and negative aspects of their caregiving experience and the adaptational
challenges that families face. This analysis will necessarily touch upon areas that are
the subject of other chapters in this volume. Following the conceptual framework on
V. H. Raveis ()
Psychosocial Research Unit on Health, Aging and the Community,
New York University, New York, NY 10010, USA
180 V. H. Raveis
the cancer caregiving process developed by Nijboer et al. (1998), this review will
focus primarily on two main concepts that have a central role within the caregiving
situation and are posited to impact the caregiver’s health: care tasks and caregiver
experiences (i.e., burden and positive aspects).
Research: Current Impact
Cancer is not a single disease; it is a collection of different types, all characterized by

uncontrolled growth and spread of abnormal cells. The symptoms, treatment, illness
course, life expectancy, and prognosis can vary with the type of cancer and its site
(i.e., body location). As a consequence, not all research and technological advances
are applicable to the treatment and management of all cancers. However, a number
of research developments have had a cross-cutting impact that has reshaped the
caregiving situation. These are evident at each stage of the illness course—diagnosis,
treatment, and survivorship.
Improved Cancer Screening Tools Enable Earlier, More Accurate Detection. A va-
riety of technological developments in the screening and diagnosis of cancer have
reduced care demands and positively impacted informal caregiving in cancer. Im-
provements in the precision of cancer screening tools, due to various technological
advances in cancer imaging and molecular sensing, have enabled earlier cancer di-
agnoses. Initiating treatment at a less advanced, more curable stage enhances the
likelihood that treatment will be effective (Jemal et al. 2004). In addition, treatments
for early-stage cancer are usually less debilitating and extensive than for advanced
disease. As a consequence, rehabilitation may be less complex and restoration of
preillness functioning more feasible. This can translate into lessened caregiving
demands as the extent and duration of care are reduced relative to advanced disease.
Another benefit to the increased precision in cancer screening tools is that can-
cers are now being detected more accurately, reducing the number of persons who
unnecessarily undergo further diagnostic procedures. Providing a greater precision
at the screening level reduces caregiving demands. Apart from the financial costs
associated with undergoing additional diagnostic tests, the patients and families ex-
perience emotional distress and anxiety over a possible cancer diagnosis (Kash et al.
2000; Baider et al. 1999), and there are recovery-related care needs associated with
invasive diagnostic procedures.
Diagnostic Procedures Are Less Invasive. Refinements in imaging technology over
the last few decades have provided much clearer and more detailed images of organs
and tissues. With these technological developments, the range of medical options for
diagnosis has broadened. For example, advancements in computed tomography (CT)
and ultrasound have made possible the insertion of long, thin needles deep within
the body to biopsy organs, reducing the need for more invasive, surgical diagnostic
procedures. These significant technological advances have enabled the widespread
10 Advances in Cancer Care Impacting Familial Caregiving 181
use of minimally invasive diagnostic procedures. This has reduced families’ diag-
nostic burden as not only are inpatient stays reduced but many diagnostic procedures
can now be performed on an outpatient basis. Recovery time is also shortened with
a concomitant decrease in the need for practical assistance and care provision.
Criteria Have Broadened for When and Who Is a Patient. Progress in biomedical
research has led to the identification of an increasing number of precancerous con-
ditions, effectively pushing back the beginning of the disease time-line for a variety
of cancers. Genetic testing is available that can identify individuals with genes asso-
ciated with certain cancers, such as breast, ovarian, and pancreatic cancer. Similar
diagnostics advances are expected in the future for other cancers. These various
biomedical developments have broadened the number of individuals impacted by
cancer and redefined cancer caregiving. Knowledge of a cancer risk precipitates a
range of care tasks. Growing numbers of families are being challenged with living
with the uncertainty of when or if a relative may develop cancer (Baider et al. 1999).
Studies have shown that individuals are profoundly impacted and distressed by being
at risk of cancer (Kelly 1983; Wellisch et al. 1991, 1992; Kash et al. 2000; Meiser
et al. 2001; Raveis and Pretter 2005). Moreover, in addition to providing emotional
support, family members may also be engaged in evaluating various monitoring op-
tions and preventive measures. Surveillance choices, such as “watchful waiting,”
may challenge families to cope with uncertainty (Wallace et al. 2004). Other options
may create demands for practical support and assistance, when surgical inventions,
such as prophylactic mastectomy or preventive drug therapies, are implemented.
Surgery Less Invasive or Radical. As a consequence of the refinements in imaging
technology that have produced clearer and more detailed images of organs and tis-
sues, the range of medical options for the management and treatment of cancer has
expanded. Minimally invasive surgical procedures reduce inpatient stays and permit
many procedures to be performed in hospitals on an outpatient basis and in physicians’
offices. Use of this type of surgical procedure is also associated with reductions in
the length of the recovery period and a minimization of permanent surgical changes.
Progress in biomedical research has also informed the adoption of less mutilating
surgical procedures. Less radical surgical approaches, such as lumpectomy, not only
diminish the risk of postoperative complications such as bleeding and infection, but
also cut down on the formation of scars, and reduce permanent side-effects. Clinical
research has demonstrated that, compared to more radical procedures, less muti-
lating surgical procedures effect similar success in cancer survival (Edwards et al.
2005). These various surgical advances alleviate some of the care needs associated
with surgical interventions and can translate into reduced caregiving demands. The
period required for recovery is reduced and there is a greater likelihood of restoration
to preillness functioning.
Treatment Side-Effects Reduced. Technological and biomedical advances have also
reduced the occurrence and severity of side-effects from cancer treatments, further
impacting recovery time and caregiving needs. Radiation treatments that required
an inpatient stay are now routinely delivered in outpatient clinics and physicians’
offices (Mor et al. 1992). These treatments are now able to be delivered with greater
182 V. H. Raveis
precision, reducing the amount of normal tissue receiving the radiation and mini-
mizing side-effects (e.g., skin irritation, nausea, diarrhea, hair loss, loss of energy).
The development of radiation implants provides for the concentrated timed delivery
of radiation over a sustained interval to a limited area. This process minimizes the
area affected by radiation and permits patients to remain at home during treatment,
reducing the needs for multiple clinic visits.
Similar advances have been achieved with chemotherapy. Less cytotoxic
chemotherapy regimes are now available that have less severe and frequent treat-
ment side-effects, enabling more patients to be managed on an ambulatory basis
(Given et al. 2001; Raveis et al. 1998). Technological developments, such as in-
fusion pumps and vascular access devices, have also made it feasible for patients
to receive complex chemotherapeutic routines while being maintained in the home
(Crawley 1990). As with radiation treatment, recovery times have shortened and care
needs lessened.
Biological therapies, a more recent addition to the standard cancer treatments
of surgery, chemotherapy, and radiation, use the body’s immune system to fight
cancer and reduce or repair treatment-related side-effects. Most cancer therapies
inadvertently damage or destroy some normal cells as well as cancer cells, resulting
in temporary (e.g., baldness) or permanent (e.g., sterility) treatment-related side-
effects. However, biological therapies selectively target the cancer cells, leaving
normal cells alone. This reduces treatment-related side-effects and limits the scope
and duration of patients’ caregiving needs.
Medically Vulnerable Populations Receive Aggressive Treatment. The development
of effective cancer treatment approaches that are less harsh and have fewer and better
controlled side-effects has permitted the delivery of more aggressive cancer care to
those who are medically frail or have comorbid conditions (e.g., the elderly). The
burden of cancer is considerable in the elderly. In the United States, almost 60%
of new cancers occur in persons over 65 (Edwards et al. 2002). Age adds a layer
of complexity to cancer caregiving not present in other cancer care situations. As
a consequence of the physiological changes associated with aging (e.g., decreased
stamina and physical strength, frequent comorbidities, and heightened disability), the
elderly are likely to have more extensive, complex, and long-term caregiving needs.
Older cancer patients may require a longer period of rehabilitation from treatment,
experience more severe or longer-lasting side-effects, and have a lower likelihood of
restoration to preillness functioning (Balducci 2006; Carreca et al. 2005; Balducci
and Yates 2000). In addition, given that the number and severity of chronic health
conditions increase with age, the cancer diagnosis may not initiate the family’s
caregiving role, but rather expand upon or add to an already existing set of care re-
sponsibilities. With older adults, comorbid conditions are common and families may
have already been providing care to their elderly relative for other health conditions
when the cancer was diagnosed (Kurtz et al. 1994). Given the aging of the population,
based on cancer incidence rates and U.S. Census Department population projections,
it is anticipated that the number of cancer patients 65 and older will double in the
next 30 years (Edwards et al. 2002). Perhaps even more significantly, the number of
cancer patients aged 85 and older is expected to increase fourfold between 2000 and
2050 (Edwards et al. 2002). These projections suggest that a substantial proportion
of cancer caregivers will be dealing with the added caregiving challenges associated
with advanced age.
Survivorship Is Increasing. Improvements in diagnosis and advances in treating and
medically managing cancer have contributed to reduced mortality and gains in cancer
survival (Jemal et al. 2006). Consequently, the chronic phase or adaptation phase
of the disease course, i.e., the period of survival that follows the initial medical
intervention, has lengthened for an increasing number of cancer patients (Balducci
and Yates 2000; Newport and Nemeroff 1998). Increased survivorship is likely to
have a significant impact on caregiving demands (Lewis 2006), particularly since
the number of elderly persons living with cancer is substantial. About 60% of cancer
survivors are 65 or older, with 32% of the survivors 75 and older (Edwards et al.
2002).
Research: Future Impact
Biomedical Advances in Cancer Treatment May Reduce Care Needs. Emerging

technological advances in biotherapy are informing the development of immuno-
toxins and vaccines that utilize the immune system to attack existing cancer cells.
Although the number of these drugs approved for cancer therapy is limited, a sub-
stantial number are under development. They hold a promise to significantly reduce
cancer burden. Gleevec, recently approved for the treatment of chronic myeloid
leukemia and gastrointestinal stomal tumors, is an example of this new class of drug
therapy. Gleevec works by blocking the rapid growth of white blood cells. Its side-
effects have been found to be less severe than traditional therapies and it has been
shown to have a beneficial impact on patients when other treatments have failed.
A number of other ongoing areas of clinical investigation also have the potential to
positively impact the scope and duration of family caregiving in the future. Develop-
ments in pharmacology show future promise for effective drug therapies that can be
initiated in persons with conditions that are a precursor to cancer. Success in reduc-
ing the incidence of cancer readily translates into a reduced need for care provision.
Early studies with the drug celecoxib indicated that the drug was effective in reduc-
ing the number of colon polyps in patients with a precancerous condition, familial
adenomatous polyposis (FAP) (National Cancer Institute [NCI] 2006). Clinical trials
are evaluating its efficacy with related conditions.
Research is also progressing on the development of a variety of cancer prevention
vaccines that utilize an individual’s immune system to evoke an immune response
that targets cancer-causing agents. One such agent on which early clinical vaccine
trials are being conducted is the sexually transmitted human papillomavirus (HPV)
(Winstead 2005), which has been linked to cervical cancer. With an arsenal of ef-
fective cancer vaccines, a family’s future caregiving responsibility could focus on
proactive tasks, such as ensuring participation in cancer screening.
184 V. H. Raveis
There also is continuing effort to further reduce the adverse consequences of

current treatment approaches. Studies are continuing regarding a “minitransplant”
option for bone marrow transplantation (NCI 2004). This experimental procedure
takes advantage of the immune properties of the donor stem cells to kill the cancer
cells while tolerating the patient’s normal cells. A key benefit of this approach is that
patients receive a much lower dose of radiation and most will be able to leave the
hospital the same day as the procedure, unlike conventional bone marrow transplants
in which patients are hospitalized in intensive care for 2 to 3 months. If found to be
effective, it could expand the option of bone marrow therapy to include patients
who are too infirm or debilitated to undergo conventional bone marrow procedures.
Unlike the caregiving demands associated with traditional bone marrow transplants,
the extent and intensity of caregiving demands during the briefer recovery period
with minitransplants is substantially reduced.
Emerging developments in nanotechnology show promise as biodegradable car-
riers for therapeutic agents. Nanocarriers have been developed that directly target
tumor cells, reducing damage to noncancer cells and overcoming multiple-drug
resistance (NCI Alliance for Nanotechnology in Cancer 2005). The clinical ap-
plication of these technological advances would further reduce cancer burden and
caregiving needs.
Practice: Current Impact
Cancer and its treatment create multiple demands for caregivers as they assist patients
in dealing with the physical and psychological consequences of surgery, chemother-
apy, and radiation, in addition to disease-related care tasks. Informal caregiving to
cancer patients can encompass emotional support, financial aid, and the provision of
services ranging from instrumental aid and assistance with personal care, to health
care tasks and mediation with formal care providers (Given et al. 2001; Glajchen
2004; Raveis et al. 1998; Schumacher et al. 2000). Although current practices in the
treatment and management of cancer have reduced some of the caregiving demands
associated with treatment delivery, recovery, rehabilitation, and adaptation, other
caregiving responsibilities have increased.
Treatment Decision-Making Tasks Are Complex. The period immediately following
a cancer diagnosis is a time of intense stress and crisis for patients and their families,
characterized by a series of unrelenting demands, intense activity, and uncertainty
(Raveis and Pretter 2005). During this time, families are confronted with needing
to make numerous difficult treatment decisions that may necessitate the mastery of
new information in order to make informed choices (Maliski et al. 2002). In recent
years, the process of clinical decision-making has become more complex, given the
ongoing advances in cancer treatment and its management, as well as the expanded
access to clinical trials in community settings. The current opportunities and future
promises of new therapies contribute to the uncertainties the patients and families
confront when deciding among care options. Families engaged in informed decision-
making are challenged with needing to search out available information and evaluate
the options (Schumacher et al. 2000). Increasingly, this task may involve weighing
the merits of standard practice against the uncertainty and promise of alternative or
experimental treatments not routinely offered. Indeed, there is growing concern that
an unintended consequence of increasing access to clinical trials is raising families’
optimism and incurring unfounded hope (Sankar 2004).
Families are faced with having to weigh the risks and benefits of specific ther-
apies (e.g., minimally invasive surgery, hormonal therapy, prophylactic therapy) in
conjunction with quality-of-life considerations (e.g., the choice of potentially toxic,
time-intensive interventions that might prolong life versus less aggressive measures
that would improve short-term quality of life but not extend it). Implementation of
a treatment choice may also require families who are intervening on behalf of the
patient to ensure access to the most appropriate health care providers. These tasks
represent an expansion of the health care advocacy tasks that families perform (Schu-
macher et al. 2000). Their performance can require a considerable investment of time
and effort. The import of this responsibility is not taken casually and caregivers can
find themselves challenged and stressed with the responsibility (Raveis and Pret-
ter 2005). In addition, families may experience regret or guilt over their decision
when the treatment has undesirable side-effects or the desired outcome has not been
achieved; they may worry that a different choice would have been better.
Physical Environment of Care Has Changed. Several trends in health care and can-
cer treatment have coalesced to expand families’ involvement in the care of cancer
patients throughout the disease course. The national trend toward “dehospitalization”
of medical care encompasses the management and treatment of cancer. The shift from
the hospital to community- or home-based long-term care has transferred more care
and management tasks to the family, broadening the scope of their caregiving tasks
(Siegel et al. 1996). The family has become directly involved in delivery of both
active treatment and rehabilitative care, a not-inconsequential expansion of their set
of care responsibilities. For example, family caregivers are now directly involved
in administering medications, checking proper dosage, providing pain relief, and
monitoring treatment effectiveness (Given et al. 2001). They also serve as patient
advocates, communicating with health professionals and other service providers for
care and symptom palliation (Blanchard et al. 1997; Ferrell et al. 1991).
While the practical and emotional benefits to cancer patients of family support and
assistance are readily acknowledged (Baider et al. 2003), a growing body of evidence
is documenting that the costs to the caregiver of providing support and assistance are
far-reaching and diverse (see Gilbar and Ben-Zur 2002; reviews by Kotkamp-Mothes
et al. 2005; Given et al. 2001). The process of attending to their relative’s needs for
cancer-related assistance and support has been shown to be stress-inducing, imposing
diverse lifestyle restrictions and engendering elevated distress levels (Cameron et al.
2002; Gilbar and Ben-Zur 2002; Given et al. 2001; Matthews et al. 2003; Northouse
et al. 2000; Raveis et al. 1998).
186 V. H. Raveis
Given the growth in the number of older adults with cancer, and the expectation
that this trend will continue in the future, this shift in the physical location of the
treatment and management of elderly cancer patients has direct implications for
scope and duration of families’ care provision. The number of families involved in
caregiving for elderly cancer patients can be expected to steadily increase. Caregiving
demands are likely to be more complex and time-consuming. With population aging,
cancer caregivers, themselves are likely to be older as well and may simultaneously
be coping with their own health conditions.
Duration of Care Has Increased. With the advent of earlier detection of cancers
with effective treatments and the advances made in the medical management and
treatment of the disease, survival time following the cancer diagnosis has increased
(Jemal et al. 2004). The quality and quantity of survival following a cancer diagnosis
is likely to have a diverse impact on the caregiving situation (Lewis 2006; Mellon
and Northouse 2001). While the beneficial impact to the family of long-term sur-
vival is self-evident, awareness is growing that survivorship may present additional
adaptational challenges (Houldin et al. 2006; Hewitt et al. 2006). Extended involve-
ment in care provision increases caregivers’ risk of experiencing adverse caregiving
consequences. An expanding body of research investigations has documented that
cancer caregiving can impact all aspects of the caregiver’s life, potentially interfering
with occupational, social and leisure activities; restricting privacy; imposing finan-
cial burdens; initiating conflicts with well family members; and inducing physical
strain, chronic fatigue, and emotional distress (see reviews by Given et al. 2001;
Kotkamp-Mothes et al. 2005; Northouse 2005). Cameron et al. (2002) observed
that cancer caregivers experienced increased emotional distress, regardless of the
amount of care they provided, when their care provision interfered with their lifestyle.
Nijboer et al. (2001) documented similar findings in a longitudinal investigation of
cancer caregivers. Caregiver depression was associated at baseline and follow-up
with the perception of their schedule being disrupted due to care provision.
Coping with Treatment and Disease-Related Side-Effects. Even with advances in
cancer treatment, most cancer therapies are not without some adverse health effect
(i.e., nausea, pain, fatigue, weight change), that varies in controllability and duration.
In addition, patients may also be experiencing disease-related symptoms. Pain and
fatigue are particularly difficult for caregivers to observe, especially when efforts to
manage them are ineffective. Family caregivers to cancer patients with pain have been
found to experience more strain and depressive symptoms than caregivers to cancer
patients without pain (Miaskowski et al. 1997). The physiological changes in organ
function associated with aging place the older cancer patient at increased risk for
treatment-related toxicities (Lindley et al. 1998). Comorbidities, common in older
patients, also increase the risk of adverse treatment-related side-effects (Balducci
et al. 2005). Elderly patients may be on other medications that can interact with
cancer treatments (Edwards et al. 2002).
Substantial progress has been made in effective treatments to manage or reduce
treatment or disease-related side effects, such as nausea, fatigue, and pain (Patarca-
Montero 2004). Current pain management techniques include the use of patches and
pumps to deliver a constant, controlled level of pain medication, enabling effective

pain management in the home setting (Glajchen 2004). Despite these practice ad-
vances, barriers to effective symptom management during home care exist. Family
caregivers often require information, education, and guidance in symptom manage-
ment, indeed, improvement in care provision is shown following targeted intervention
(Given et al. 2001; Golant et al. 2003; Pasacreta et al. 2000).
The need for symptom management does not abate when active treatment has
been completed. During survivorship, the patient may experience not only the resid-
ual symptoms of the disease itself but also the sequelae of the treatment received.
That is, cancer patients can be free of disease, but still experience intense symptoms
posttreatment (Chang et al. 2000; Kristjanson 1993). Although some symptoms may
have persisted immediately following the active treatment period, there is a growing
body of evidence that symptoms associated with the cancer and its treatment can
continue to emerge months to years following treatment (Hewitt et al. 2006; Houldin
et al. 2006; see review by Newport and Nemeroff 1998). For example, several stud-
ies have found clinically significant cancer-related fatigue persisting several years
posttreatment (Beisecker et al. 1997; Bergland et al. 1991; Broeckel et al. 1998;
Cella et al. 2001). Similar findings have been reported for depression and insomnia
(Breitbart 1995; Couzi et al. 1995; Meeuwesen et al. 1991; Spiegel et al. 1994).
Adaptational Challenges in Survivorship. With longer cancer survival periods, more
families will have to cope with the emergence of long-term treatment-related con-
sequences that may develop over time and necessitate further care provision. For
example, as a consequence of the successes in recent decades in the treatment of
childhood cancers, a growing number of adult cancer survivors are now facing a set
of new health problems, including the development of new cancers related to the can-
cer therapies they received during childhood (Friedman and Mulhern 1991; Hewitt
et al. 2006). In these instances, the total cancer-related caregiver burden may span
decades and can encompass different caregiving cohorts (i.e., parental caregivers
during childhood and spousal or adult child caregivers in adulthood).
In the posttreatment survivorship period, the patients and their families are liv-
ing with the uncertainty centered on the treatment’s efficacy and fears of disease
recurrence (Li et al. 1997; Mellon and Northouse 2001). Having to live with this
uncertainty and needing to adjust to disease-related changes can be highly stressful,
creating heightened anxiety, depression, and demoralization among patients and their
families (Jessop and Stein 1985; Li et al. 1997; see review by Kotkamp-Mothes et al.
2005). Even if the prognosis for long-term survival is good, family members may
need to come to terms with disease or treatment-related changes from the patient’s
preillness functioning and need to adjust to losses imposed by the illness, includ-
ing changes in roles and lifestyles. The shock and disbelief that family members
experience during the initial diagnosis period may block out consideration of the
consequences of living with cancer. Extending survival does not necessarily mean
that the person is ultimately restored to a preillness level of functioning. From a
care perspective, improvements in cancer survival may mean that more families are
188 V. H. Raveis
involved in a lengthier period of care provision and face the financial, insurance, and
employment concerns associated with survivorship.
An emerging issue in cancer survivorship, particularly germane for elderly pa-
tients, concerns the growing awareness that survivors’ noncancer health needs are
not being adequately addressed. A recent analysis of Medicare claims, determined
that cancer survivorship was associated with an increased likelihood of not receiving
recommended care across a broad range of chronic medical conditions (Earle and
Neville 2004). Given the progress in cancer survivorship, families’caregiving burden
could be intensified if preventive care and treatment for comorbid conditions are not
received. Comorbidities are common in older cancer survivors and this can contribute
to the emergence of additional comorbidities posttreatment (Yates et al. 1980). The
physiological changes in organ function associated with aging may contribute to late
treatment effects on normal tissues and vital organs emerging in long-term older
survivors months and years after treatment (Newport and Nemeroff 1998).
Practice: Future Impact
Aging of Population Increase Families’ Cancer Burden. As the population ages, the
burden of cancer, already considerable in the elderly, will continue to grow. Persons
aged 50–64 have cancer rates 7 to 16 times higher than younger adults, with rates
for persons aged 65–74 two to three times higher. It is anticipated, based on cancer
incidence rates and U.S. Census Department population projections that the number
of cancer patients 65 and older will double in the next 30 years (Edwards et al.
2002). This means that the number of persons who are likely to be involved in cancer
caregiving will dramatically increase.
Financial Costs of Care. Financial costs of cancer are likely to continue to be a bur-
den to patients and their families and may require them to face some difficult treatment
choices. Cancer-related care costs are expected to increase as new, more advanced,
and technologically complex therapies become routinely available (Thorpe et al.
2004). The economic costs to families of cancer care can be considerable and ad-
vances in cancer treatment may pose additional economic barriers to continued care
(see review by Haley 2003). Insurance coverage may be limited for some experimen-
tal or prophylactic treatments. The high cost of drugs and medications throughout
the survivorship period, or for an extensive period of time, may limit the families
who could afford to provide this life-sustaining care.
Psychosocial Challenges of Cancer Survivorship. Even with advances in cancer
treatments, most therapies produce some measure of adversity. With the growing
number of cancer survivors, attention needs to focus on understanding and addressing
the adverse effects of current and new cancer treatments, specifically with regard to
the health status and quality of life of patients in their posttreatment years (Hewitt
et al. 2006; Houldin et al. 2006).
Attending to the Needs of the Family Caregiver. A recent metaanalysis of distress in

the cancer patient-family caregiver dyad confirmed the close relationship in distress
levels (Hodges et al. 2005), supporting the value of the healthcare team viewing
the patient-family caregiver dyad as the unit of care (Matthews et al. 2003; Raveis
and Pretter 2005). Effort has not been routinely directed toward assisting the family
in coping with the cancer experience. Rather, family caregivers have been viewed
as part of the care team. Little attention has been focused on attending to families’
psychosocial concerns living with a genetic risk factor for cancer. Given the emerging
developments in genetic research, these issues are likely to take on added significance
for families impacted by cancer.
Facilitating Informed Clinical Decision-Making. At various points in the illness con-
tinuum, patients and families are confronted with having to make decisions about
treatment options. Oftentimes these decisions need to be made quickly, require as-
sessment of complex and technical information, and weighing multiple options with
varying risks and benefits against uncertain outcomes. There has been limited effort
to facilitate families’ involvement in the clinical decision-making process. Given the
expected ongoing progress in cancer treatment and management, decision-making
is likely to become even more complex in the future and procedures that can assist
family in weighing options, arriving at decisions and managing their uncertainty will
be critical.
Education and Training: Current Impact
An effective familial caregiver can bolster patients’ well-being and alleviate demands
on the health care system. However, the viability of the informal care system is not
only dependent upon the willingness of the families to provide care, but also their
ability to provide the needed care (i.e., task-specific skills and abilities). Deficiencies
in a caregiver’s performance can seriously impact the well-being of the patient and
the family member, threatening the quality and sufficiency of care on a long-term
basis.
Acquisition of Specialized Skills. Advances in the management and delivery of can-
cer treatments have not only permitted the portability of the treatment delivery (i.e.,
out of the hospital or clinic and into the home), but have also required the caregiver
to become involved in the delivery of technical and complex care routines. These are
tasks for which families may not have received prior preparation or training and ini-
tially are ill-equipped to perform. In an early study of familial caregivers to advanced
cancer patients, over two-thirds of the familial caregivers reported having to learn
the skills that would enable them to manage the patient’s activities of daily living
(i.e., assist with the patient’s ambulation, handle bowel and bladder disturbances),
manage the patient’s pain, attend to nutritional needs and dietary requirements, and
provide general comfort (Grobe et al. 1981). A recent investigation of family care-
givers to end-stage cancer patients documented that this caregiver information gap
190 V. H. Raveis
still exists. Over three-quarters of the caregivers reported needing training in nursing
skills and information about medical aids (Jansma et al. 2005; see review by Given
et al. 2001).
Education and training programs have demonstrated efficacy in enhancing care
provision. Several studies have demonstrated that patient and family education on
pain management significantly decreased pain intensity ratings in cancer samples
(Overcash et al. 2001; Wright et al. 2001; see review by Green et al. 2003). Cancer
caregivers who participated in a course that provided education and support felt
less overwhelmed, more knowledgeable, and better able to cope with caregiving
(Robinson et al. 1998). Andrews (2001) noted that information was a means of
increasing caregivers’ feelings of efficacy and lowering perceived burden. Yates and
Stetz (1999) have suggested that efforts which increase caregiver knowledge may
reduce some of the ambiguity in the caregiving situation, in turn reducing caregiver
distress. Coristine et al. (2003) found that caregivers caring for family members with
advanced disease found it difficult to understand symptoms experienced by patients
and to decide when a medical intervention was necessary. A central component of
fatigue management is educating the patient and family about fatigue, i.e., the fact
that management strategies exist and that it is important to report fatigue to their
health care provider (Cella et al. 1998).
Technological Advances in Training Resources. While caregiver instructional ma-
terials are limited, the Internet has become an expanding resource for cancer
information and education. There is a growing body of evidence that it is a viable
medium for offering individualized clinical information and educational support that
address families’ informational and cancer caregiving needs (Lewis et al. 2005).
Informed Decision-Making. In making decisions about treatment options, families
are faced with having to obtain and evaluate evidence and information that they
require to make an informed choice. While efforts are being made to move toward
a consolidation or synthesis of best practice approaches (Edwards et al. 2005), spe-
cialized knowledge may be necessary for family members to fully understand the
clinical information about treatment options and weigh their merits and potential con-
sequences. As cancer treatment continues to advance, families may be confronted
with more complex decisions. Informed decision-making necessitates that families
fully understand the level of uncertainty involved in the cancer treatment and man-
agement decisions. Interventions have been shown to be beneficial to families in
managing treatment uncertainty in decision-making (Germino et al. 1998; Maliski
et al. 2002; Mishel et al. 2002, 2003).
Education and Training: Future Impact
Targeted and Sustained Education Needed. Even though recent years have seen a
growth in education and training opportunities for family caregivers, significantly
more resources need to be provided. Caregivers’ basic information needs are not
sufficiently met (Chalmers et al. 2003; Iconomou et al. 2001). Training programs
for family caregivers tend to be sparse and localized, usually institutionally based.
Family caregivers would benefit from systematic efforts to provide education and
training in basic nursing and home medical care techniques, symptom interpre-
tation, managing treatment and illness-related side effects, as well as training in
operating and maintaining in the home specialized equipment or devices. Demon-
stration programs which may provide specialized or targeted training and support
tend to be time-limited. Instructional programs and materials for diverse caregiving
groups need to be accessible throughout the disease course and updated to reflect
emerging technological developments and advances in treatment and management
of cancer.
Policy: Current Impact
A variety of policies implemented since the initiation of the National Cancer Act in
1971 have directly impacted how cancer care is delivered and accessed, as well as the
resources available for coping and adapting to the cancer experience (Dunn 2002).
As discussed below, the outcomes of these policies have shaped cancer caregiving.
Mandate to Deliver Cancer Advances to the Broader Community. During the 1980s,
the National Cancer Institute (NCI) initiated a policy-driven effort to disseminate the
technological developments in cancer treatment and control that are available at the
major cancer centers to the broader medical community. The Community Clinical
Oncology Program (CCOP) is an example of one such organizational mechanism,
established by NCI, to facilitate technology transfer to community oncology pro-
grams and permit advances in cancer care to be available in community settings
(Kaluzny et al. 1989). Efforts were also instituted to expand community access to
NCI clinical trials. Although geographic disparities in access to quality cancer care
still exist (Edwards et al. 2005), these changes have made it more feasible and less of
a burden for patients to participate in clinical trials and to obtain access to the latest
advances in cancer treatment while remaining in their community. Previously, clini-
cal trial participation or access to specialized and/or state-of-the-art cancer therapies
has generally only been available in major clinical and research cancer centers. Fam-
ilies would have to incur considerable financial expense and experience substantial
time and social costs traveling to a distant treatment center for what would typically
be a lengthy cancer treatment period. The National Institute of Health’s policy shift
to start including the elderly in most clinical trials has contributed to cancer being
more aggressively treated in older adults.
Resources to Affected Groups. As part of a growing recognition on a national level of
the complex challenges families face in providing adequate care or maintaining care
over a lengthy time interval, a number of legislative developments have been enacted
to facilitate families’ management of their care burdens and demands. Examples
include the Older Americans Act, which includes the National Family Caregivers
192 V. H. Raveis
Support Program and the Family and Medical LeaveAct. There has also been growing
awareness over the last few decades that cancer is a family illness (Baider et al.
1999). That is, in addition to cancer affecting the patients themselves, its diagnosis,
treatment, and resolution affect their family members as well, the “second-order
patients” (Rait and Lederberg 1989; see review by Nijboer et al. 1998). Policy
statements issued by the National Cancer Institute define cancer survivors as anyone
touched by cancer (National Cancer Institute Office of Cancer Survivorship n. d.).
Indeed, the National Coalition for Cancer Survivorship has stated that the patient
and family should be seen as a unit of care and notes the necessity of addressing the
impact and consequences of cancer care on family caregivers (Clark et al. 1996).
Policy: Future Impact
Supportive Services Needed. As advances in cancer care continue to transform can-

cer into a chronic disease, more individuals in the future will be living with and
affected by the cancer experience. Policies that provide families with respite care, tax
relief, employee caregiver assistance programs, insurance coverage for experimental
procedures (including participation in clinical trials, complementary or alternative
medicine), and caregiving-related “out-of-pocket” expenses, would be beneficial to
family caregivers and provide relief for some caregiving burdens.
Conclusions
Family members are being increasingly relied upon as the major source of support
and assistance to persons with cancer. Developments in the treatment and manage-
ment of cancer are contributing to an expansion of the scope and duration of the
family caregiving role. Current trends suggest that the magnitude and complexity
of the caregiving situation will continue to evolve. Although advances have reduced
mortality and increased cancer survival, a growing number of individuals will be
living with the effect of the disease. Even though our understanding of the care-
giving process is still evolving, there is a pressing need to focus more attention on
addressing the challenges families face throughout the disease course.
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Part III
Cross-Cutting Issues Impacting Caregivers
and Caregiving
Chapter 11
Caregiver Stress: The Role of Spirituality
in the Lives of Family/Friends and Professional
Caregivers of Cancer Patients
Christina M. Puchalski
Caring for loved ones or patients who have chronic or serious illness or disability can
be one of the most challenging times in a personal or professional caregiver’s life.
The experience is filled with so many challenging events that can result in emotional,
physical, social, and spiritual changes, not only in the patient, but also in those who
care for the patient. These changes can create considerable challenges for those
involved in the caring process. However, the changes can also offer an opportunity
for growth, fulfillment, and deepening of relationships. However, there is no simple
roadmap to follow in learning how to care for others so that the positives outweigh
the negatives. The changes that occur in patients and in caregivers are unpredictable;
often resolutions are not easy to find.
In many ways, caring for each individual person becomes unchartered territory
as each person is unique and handles his or her illness in his or her unique way.
Consequently, caregivers may feel unprepared to handle the challenges as they arise.
This can result in stress for the caregivers with resultant physiologic and psycholog-
ical responses (Kloosterhouse 2002). This is particularly true for caregivers with a
loved one with cancer. A diagnosis of cancer can cause extreme fear, helplessness,
emotional and spiritual distress. The uncertainty associated with treatment choices
and treatment outcome can cause tremendous anxiety and stress for patients and their
loved ones.
There has been substantial anecdotal and research evidence of the physiologi-
cal and emotional effects of stress on a person. Herbert Benson and others have
demonstrated that stress can result in deleterious health effects, such as hyper-
tension, cardiovascular disease, ulcers, insomnia, anxiety, depression, anger, and
fatigue (Benson 1996; Selye 1978).Yet, others have identified an association between
stress, the lack of psychosocial resources to deal with stressors, and immunologic
disturbances. There is increasing evidence of the effect of stress on the Psychoneu-
roendocrine immunologic pathways—the links between the endocrine, immune, and
central nervous system. Glaser et al. (1999) and Anderson et al. (1994) have shown
C. M. Puchalski ()
School of Medicine and Health Sciences, The George Washington University,
2300 I St NW, Suite 419, Washington, DC 20037, USA

202 C. M. Puchalski
that psychological stress can disrupt these pathways. The changes have been linked
to adverse health effects such as cardiovascular, rheumatologic, and infectious dis-
ease. Petry et al. (1991) describe an increase in stress that is associated with higher
incidences of influenza, respiratory illness, and workdays lost due to infectious
disease.
Extensive research has documented the effect of caregiver burden and stress on
the lives of caregivers (Brody 1981; Jivanjee 1994; Montgomery 1985; Pruchno
1989; Zarit 1986). It is well-documented that providing supportive care during the
diagnosis and treatment of cancer may positively affect the mental health and stress
levels of the family caregiver (Miaskowski et al. 1997; Miller et al. 1991; Schott-Baer
1993; Wyatt et al. 1999). The stress of caregiving responsibilities can result in poor
health, depression, social isolation, and financial strain (Robinson 1990). Patients
with serious illness often need help with their activities of daily living, personal self-
care, finances, etc. This is especially true for elderly patients. Often, outside help
is not readily available; only 5% of community-dwelling, long-term care recipients
receive help from outside services (Ham and Slone 1992) and home care practically
relieves only about 5–10 hour per week of family care. Ultimately, the responsibility
of caring falls on the family, who are adult offspring, usually women or the spouse
(Brakman 1994), or a combination of family and friends.
Also, having a child in the hospital usually generates a high level of stress in the
family (Kloosterhouse and Ames 2002). As the family attempts to cope, transitions
occur within the family system (McCubbin and Patterson 1983). As a result, family
roles may get shifted; marital conflict and issues with other siblings may further add
to the stress. Financial and emotional stress can further alter the family unit. Melynk
and Alpert-Gillis (1998) write that parents of seriously-ill children are at high risk
of experiencing a negative outcome as well as intense emotional liability. Families
need resources to help them through the caregiving process, resources that are often
not available. This is particularly relevant in the current climate of healthcare. As
increased financial issues weaken the healthcare system, patients are cared for less
in hospitals and more in the homes.
Caregivers are required to put their own lives on hold, to varying degrees, in order
to care for the needs of the loved one who had cancer. Caregivers sacrifice their
personal time and often their professional time with frequent absences from work
(Vachon et al. 1995). Caregivers tend to feel isolated and ill-prepared to take on the
task of caregiving (Beck-Friss and Stang 1993; Jones et al. 1993). Adult caregivers
often neglect their own health (Lindgren 1993), which can result in increased stress
for the caregiver as well as the patient (Pierce 1993). Caregivers can begin to question
who they are and what gives value and meaning to their lives. However, of all
these stressors, probably the greatest stress is created by the ambiguity regarding the
patient’s health, including the prognosis, capacity of family to provide support and
care, and financial concerns (Kloosterhouse and Ames 2002; Melynk and Alpert-
Gillins 1998). There is a tremendous amount of uncertainty with any illness and in
life in general. While science and medicine may have some answers to many of the
physical aspects of disease and illness, there are so many aspects of being ill for
which there are no answers:
11 Caregiver Stress: The Role of Spirituality in the Lives of Family/Friends . . . 203
Table 11.1 Spiritual issues Loss of meaning—no time for other activities, relationships
for caregivers Guilt/shame—feelings of resentment for ill persons not being
able to be there 100%
Questions of faith/God
Anger at God—change in life, illness, and loved one
Sense of abandonment—caregiver feels alone, uncertain
• When will my loved one die and how?

• How long can my loved one function like this?
• Why cannot this illness be cured?
• Why is he suffering?
• Why do I feel angry with her?
• Why is he happy one day and depressed the next?
• How will I cope with her death?
• What is the meaning and purpose of my life in the midst of this caregiving
experience and stress?
• Why cannot I do and be everything to another person?
These are just some of the questions that face caregivers for which there are no
exact answers. Much of what caregiving involves is engaging in problem solving in
situations that have clear answers for some issues and no or little answers for others.
This uncertainty can lead to increased stress and suffering for both the caregivers
and the patient. Caregivers are forced to change their priorities and often drastically
change their life due to the lack of certainty that is inherent in any situation of a
chronically-ill patient.
These questions of uncertainty, limitations, meaning, and purpose are essentially
existential or spiritual questions. Burton (1998) writes, “Spirituality is the expres-
sion of self-in-relation, incorporating both material and nonmaterial realities, and
reflecting the tension between the possibilities and limitations of human existence
in history.” Thus, caregiving will trigger spiritual questions within the caregiver as
well as the patient. Some spiritual issues caregivers face are outlined in (Table 11.1).
It is critical that those questions be addressed and supported.
There are many education programs for physicians and other healthcare providers
that teach professionals how to address spiritual issues with cancer patients
(Puchalski 2002, 2006; Puchalski and Romer 2000). It is important that those pro-
grams also extend to families and friends who are the personal caregivers as well as
to professionals who are caregiving. Stress is common in the workplace, particularly
for those in the healing professions (Funk 1995). Demands are frequently placed
on professional caregivers that lead to an accumulation of pressure. Healthcare pro-
fessionals are confronted with losing satisfaction in their work as the stresses of the
changing healthcare system escalate (Remen 1977; Sulmasy 1997). There are unique
stressors for professionals, including time management, boundary issues in devel-
oping relationships with patients and their families, issues of control, and battling
uncertainty in the face of an educational system that teaches certainty, grief, and loss.
Sulmasy writes, “Physicians are so afraid of uncertainty that they fear being gen-
eralists, fear the consequences of not doing CT scans for headaches.” Montgomery
204 C. M. Puchalski
Table 11.2 Caregiver’s Physical—sleep, exercise, good nutrition

well-being Emotional—counseling, treating depression and anxiety,
grief work
Social—support groups, talking with friends, church
Spiritual—meditation, yoga, chaplains or spiritual directors,
religious activities, deriving meaning from caregivers,
forgiveness, humor, ritual
(1997) notes, “Nurses are constantly challenged to make sense of the insensible when
they are confronted with inhumanity, violence, suffering, and trauma.” She further
goes on to postulate that the exposure to suffering and the existential questions that
arise from suffering may lead to a spiritual or philosophical growth, or it may result
in a “gradual wearing down of the spirit,” but that the relationship with the patient
facilitates spiritual growth for the professional caregiver by allowing the nurse to
become part of a larger consciousness.
Since caregiving demands lead to increased stress for cancer caregivers, and stress
can have deleterious health and emotional effects, self-care, therefore, becomes
essential for the caregiver. However, often the needs of the cancer patient outweigh
the needs of the caregivers in the process of caring for a loved one. Caregivers need
to look at their own physical, social, emotional, and spiritual well-being throughout
the process of caregiving (see Table 11.2). As we discuss ideal systems of care, it is
critical that we give care of the cancer caregiver the same weight we assign to care
of the patient with cancer. Furthermore, we need to design systems of care in which
all dimensions of care—physical, emotional, social, and spiritual—are addressed.
What is Spirituality?
Spirituality is able to go beyond what is within the reach of our senses and deal with
what gives meaning and substance to our lives (Puchalski and Sandoval 2003). One
can ask questions such as:
• Who am I?
• What am I?
• What is my purpose?
Advanced illness is frequently characterized by suffering and distress that may
manifest as these spiritual questions, and as not only physical and psychological
symptoms, but also as existential or spiritual distress. Spiritual and existential dis-
tress is probably the least understood source of suffering in patients with advanced
disease, for it deals with questions regarding the meaning of life, the fear of death,
and the realization that one will be separated from their loved ones (Doyle 1992).
Thus, illness, dying, and death are spiritual as well as physical events in the lives of
patients and caregivers.
In a study of spirituality among the terminally ill, Reed (1987) defined spirituality
as the relationship outside one’s self: “Spirituality is defined in terms of personal
views and behaviors that express a sense of relatedness to a transcendent dimension
or to something greater than self.” For many, these existential questions are mainly
expressed in a formal religion by the belief in a deity, the theology of the religion,
the concept of an afterlife, and the rituals and practices of the religion used to
express those beliefs. Many religious traditions have a rich tradition and experience
in giving meaning to the cause of suffering and how to restructure it into a positive
experience. Sumner (1998) further defines spirituality in terms of values and “as a way
of being and experiencing that comes about through the awareness of a transcendent
dimension. Spirituality is characterized by certain identifiable values in regard to
self, others, nature, life and whatever one considers to be the Ultimate. . . . It is
that which gives one purpose, meaning and hope and provides a vital connection”
(Sumner 1998, p. 28).
Addressing the role of religion in medicine in the first decade of the last century,
William Osler wrote:
Nothing in life is more wonderful than faith, the one great moving force, which we can
neither weigh in the balance nor test in the crucible. Intangible as the ether, ineluctable as
gravitation, the radium of the moral and mental spheres, mysterious, indefinable, known
only by its effects, faith pours out an unfailing stream of energy while abating neither jot
nor tittle of its potence (Osler 1910, p. 1471).
Osler concluded that not only did faith have important effects on health outcomes,
but also that practitioners should encourage and incorporate faith as part of clinical
care.
However, spirituality can be much broader than religion. People can find meaning
in many different ways. One definition used in the clinical setting is:
Spirituality is recognized as a factor that contributes to health in many persons. The concept
of spirituality is found in all cultures and societies. It is expressed in an individual’s search for
ultimate meaning through participation in religion and/or belief in God, family, naturalism,
rationalism, humanism and the arts. All of these factors can influence how patients and
health care professionals perceive health and illness and how the interact with one another.
(Association of American Medical Colleges 1999, p. 27)
How people find meaning and purpose in life and in the midst of suffering varies.
Through one’s spirituality, people develop a person roadmap that guides them through
life. Whatever form spirituality takes, its active practice can help patients cope with
the uncertainty of their illness, instill hope, bring comfort and support from others,
and bring resolution to existential concerns, particularly the fear of death.
Humans are intrinsically spiritual beings. The 1971 White House Conference on
Aging asserted that “all persons are spiritual, even if they have no use for religious
institutions and practice no personal pieties. An individual’s unique spirituality or
spiritual style is the way he or she seeks, finds or creates, uses and expands personal
meaning in the context of the entire universe” (Moberg 1971). All humans search
for meaning and purpose in their lives (O’Connell 1996). Sulmasy (2002) calls this
the “notion of the human person as a being in relationship.” A cancer diagnosis,
just as any illness, however, can disrupt any sense of meaning and purpose and
206 C. M. Puchalski
affect relationships within and outside the person (Foglio and Brody 1988). Illness,
including cancer, can cause people to suffer deeply. Frankl (1984) wrote, “Man is
not destroyed by suffering; he is destroyed by suffering without meaning.” He noted
when writing about concentration camp victims that survival itself might depend on
seeking and finding meaning. Spirituality, then, is one way to bring wholeness and
healing to a person by a return to an integrated state where there is meaning and
purpose even in the midst of suffering and loss.
In facing a serious illness such as cancer, cure may not be possible, but healing
can occur. Cancer may disrupt a person’s life, however, it can also offer a person
the opportunity to see life in a different way. Many people with a serious and often
terminal illness such as cancer talk of seeing a richness and fullness in life that
they had never seen before. Some people find new priorities in their life and new
appreciation for aspects of their life that they never noticed before.
Healing, then, is not synonymous with recovery, and it may occur at any time,
independent of recovery from the illness of cancer. In dying, for example, restoration
of wholeness may be manifested by a transcendent set of meaningful experiences
while very ill, and a peaceful death. In dealing with cancer, healing may be expe-
rienced as the acceptance of limitations (Puchalski 1999). A person may look to
medical care to alleviate his or her suffering and when the medical system fails to
do so, begin to look toward spirituality for meaning, purpose, and understanding. It
is the combination of good clinical, technical, and spiritual care that can provide the
most holistic care for individuals with cancer.
The Role of Spirituality in Health
Survey Data Demonstrating Patient Need
Several national surveys have documented patients desire to have spiritual concerns
addressed by their physicians. A 1990 Gallup Poll showed that religion, one expres-
sion of spirituality, plays a central role in the lives of many Americans. When asked,
95% of Americans surveyed espouse a belief in God, 57% report praying daily, and
42% report attending a worship service in the prior week (Gallup 1990). The need
for attentiveness to the spiritual concerns of dying patients has been well recognized
by many researchers (Conrad 1985; Moberg 1982). A survey conducted in 1997
by the George H. Gallup International Institute showed that people overwhelmingly
want their spiritual needs addressed when they are close to death. In the preface
to the survey report, George H. Gallup, Jr., writes: “The overarching message that
emerges from this study is that the American people want to reclaim and reassert the
spiritual dimensions in dying” (George H. Gallup International Institute 1997). In
the 1990 Gallup survey cited previously, 75% of Americans say religion is central to
their lives and a majority feels that their spiritual faith can help them recover from
their illnesses. Ehman et al. (1999) found that 94% of patients with religious beliefs
agreed that physicians should ask them about their beliefs if they became gravely
ill; 45% of patients who denied having any religious beliefs still agreed that physi-
cians should ask their patients about them. In this survey, 68% of patients said they
would welcome a spiritual question in a medical history; only 15% said they actually
recalled being asked by their physicians whether spiritual or religious beliefs would
influence their decisions. In a survey of patients in a family practice outpatient clinic,
83% wanted their physicians to address their spiritual issues, citing increased trust
in physician and feeling they were listened to as the benefits of such an inquiry.
Patients ranked the circumstances in which they wanted to have their spiritual issues
addressed as follows: 94% if seriously ill with possibility of dying, 91% if suffering
from ongoing chronic illness, 83% admitted to the hospital, and 60% routine annual
exam (McCord et al. 2004).
Data Documenting the Effect of Spirituality on Illness
There is a growing body of evidence documenting the relationship between patients’

religious and spiritual lives and their experiences with illness including cancer (Levin
and Schiller 1987). In addition to surveys demonstrating that spirituality is important
to people and that a significant percentage of patients would like their physicians
to discuss their spiritual beliefs with them, a number of studies show that having
spiritual beliefs is beneficial to patients, particularly those with a serious illnesses
such as cancer. The majority of these studies look at religion as the spiritual variable
as there are more well-established measures of religiosity than spirituality. However,
that is changing as newer measures of spirituality are being developed and utilized
in studies (Fetzer Institute/National Institute on Aging Working Group 1999).
Reviews of the literature indicate potential associations between measures of
religious commitment and health measures, including blood pressure, lower psycho-
logical distress, and morbidity and mortality, in studies of many diseases (Benson
1996; Craigie et al. 1988; Larson and Larson 1994; Larson et al. 1986; Levin et al.
1987; McKee and Chappel 1992). Religious people tend to have greater life satis-
faction, marital satisfaction, well-being and altruism, coping skills, and self-esteem
compared to nonreligious people (Jenkins and Pargament 1995; Saudia et al. 1991;
Matthew et al. 1993; Levin and Larson 1997). Many researchers have found a strong
relationship between patients’ reliance on religion beliefs and practices and their
coping with cancer (Brady et al. 1999; Holland 1999). Spirituality has been found
as an important factor in bereavement. It has been reported that parents who have
lost a child have found much support following their child’s death in their spiritual
beliefs (Cook and Wimberly 1983).
Spirituality is important in coping with pain and with dying. Ninety-three percent
of patients with gynecologic cancers noted that their spiritual beliefs helped them
cope with their cancer (Roberts 1997). In a study of patients with lung cancer and
heart failure, it was found that spiritual concerns were important in both groups
of patients and their caregivers. These spiritual issues included despair, feeling life
208 C. M. Puchalski
is not worthwhile, feeling isolated and unsupported, feeling useless, lacking con-
fidence, asking “why me?,” and hopelessness (Murray et al. 2004). Patients with
advanced cancer who found comfort in their spiritual beliefs were more satisfied
with their lives, were happier, and had diminished pain (Yates et al. 1981). Hope is
an important spiritual value that may mediate coping in patients and caregivers alike.
Hope is particularly important for those suffering from cancer (Chang and Ji 2002).
Researchers have identified hope as an influence on effective coping during time of
loss, suffering, and uncertainty (Carson et al. 1990; Hockley 1993); facilitation of the
coping process (Herth 1989); improved quality of life (Rustoen 1995); and positively
influencing the immune system (Udelman 1991). Hopelessness is associated with an
increased incidence of illness, depression, and suicidal ideation (Breitbart 2000; Gill
and Gillbar 2001). In one study, hospice nurses identified hope as highly important
to those they care for in their practice (Herth 1995). Many researchers believe that
teaching people how to use effective coping resources, including spirituality, help
them deal with stress, and have improved health. They further suggest that this may
be cost-effective (Benson and Stewart 1992; Greenberg 1993).
In a questionnaire sent out by the American Pain Society, prayer was the second
most common method of pain management after oral pain medications and the most
common nondrug method of pain management (McNeill 1998). In a study of on-
cology patients by Brody et al. (1991), patients who had higher spirituality scores
reported higher quality of life than patients with comparable levels of pain or fatigue
who had lower spirituality scores. This spirituality may be a mediator in how patients
cope with pain.
Quality of life instruments used in end-of-life care measure what is the quality
of life in seriously ill and dying cancer patients. One domain in these instruments is
called the existential domain, which measures purpose, meaning in life, and capacity
for self-transcendence. Three items correlate with good quality of life for patients
with advanced disease: if the patient’s personal existence is meaningful; if the pa-
tient finds fulfillment in achieving life goals; and if life to this point is meaningful
(Cohen et al. 1995). There appears to be a relationship between spirituality and re-
ligion with will to live (Tsevat et al. 2003a, b). There is a correlation between will
to live in HIV patients and their intrinsic religiosity as well as spirituality in general.
A study of breast cancer patients found a significant association between quality of
life and spirituality (Brady et al. 1999).
Data on the Role of Spirituality in the Lives of Cancer Caregivers
Most of the studies on spirituality and religion and health focus on the patient. There
is a paucity of data on the role of spirituality in personal or professional caregivers in
general as well as in caregivers of patients with cancer specifically. Even in studies
that describe stressors that are spiritual, little is said about spiritual support. Because
of the limited studies in the area of religion and spirituality in the lives of caregivers of
patients with illness, especially cancer, I will include studies broader than just cancer.
However, any chronic illness, including cancer, causes stress for care access. In a
study by Murray et al. (2004), spiritual needs of both patients and caregivers of lung
cancer and heart failure patients were similar. So one can assume that findings could
be applicable to any chronic illness, including cancer. For example, Blank et al.
(1991) describe the stressors identified by caregivers included coping with added
responsibilities, the fear of being alone, guilt, and limited knowledge regarding
the patient’s situation. Two of these, guilt and dealing with uncertainty, have to do
with spiritual issues, yet the authors did not suggest any spiritual care. Wyatt et al.
(1999) stress how studies have not “provided a comprehensive profile of the bereaved
caregiver, including emotional, physical, spiritual, social, financial, and employment
outcomes.” Kloosterhouse and Ames (2002) also note that most studies have not
focused on the family as the unit of analysis. However, the studies that have been done
indicate the potential role for spirituality in the lives of cancer caregivers. Folkman
et al. (1994) showed that increased stress motivated the engagement of religious
coping in caregivers. Cupertino (1998) showed that caregivers who felt closer to God
prayed frequently, believed religion to be important, and were better able to cope, also
experienced less stress with their cancer caregiving demands. They felt more useful,
found new meaning in life, experienced strengthened relationships and were more
able to appreciate life (Cupertino et al. 1998). Jivanjee (1994) did a descriptive study
of caregivers of patients with Alzheimer’s disease using a naturalistic methodology.
Spiritual support was consistently mentioned by all but two of the 18 participants in
the study as being central to their sense of well-being and giving them the strength to
cope with the demands of caregiving. Taylor (2003) did a descriptive cross-sectional,
qualitative study to describe the spiritual needs of patients with cancer and family
caregivers. Caregivers were observed to have similar needs to that of the patients.
Seven categories of spiritual needs included:
• Needs associated with relating to an ultimate order.
• The need for positivity, hope, and gratitude.
• The need to give and receive love.
• The need to have meaning.
• The needs related to religiosity.
• The need to prepare for death.
In another study, Taylor (2006) measured the prevalence of spiritual needs and iden-
tified factors associated with spiritual needs among patients with cancer and family
caregivers. She found similar prevalence and similar types of spiritual needs in pa-
tients with cancer and family caregivers. The higher the prevalence of spiritual needs,
the greater the desire to receive help with those needs.
Wyatt et al. (1999) found that the caregivers of patients with cancer had more de-
pressive symptoms than the general public. Depression was passively correlated with
negative thinking and inversely correlated with positive outlook and with spirituality.
Cancer caregivers endorsed the following spiritual items (See Table 11.3).
A narrative approach of cases of patients with cancer analyzed the spiritual themes
that patients and families bring up in the clinical setting (Burton 1998). These
narratives tend to be expressed in terms of three basic themes:
210 C. M. Puchalski
Table 11.3 Spiritual items I believe in a power greater than myself

endorsed by caregivers. I know what is important in life
(From Wyatt et al. 1999) My values and beliefs help me meet daily challenges
I accept the mysteries of life and death
• Power (who is in charge and loss of personal power).

• Connection (degree to which one feels related to and loved by others).
• Explanation (what the illness, loss, and life itself mean).
Ellison and Levin (1998) postulate that religion and spirituality may be a resource
in coping with stressful events. Cancer caregivers who were able to find positive
religious values in negative situations or found religious purpose in stress were better
able to cope. Those who saw illness as a punishment from God, or saw God as an
apathetic God or unfair God, did worse (Mickley et al. 1998). Religion and spirituality
may help in coping with cancer because it helps alter the primary appraisal which
reframes the meaning or explanation of the crisis, improves a sense of secondary
control because the family feels a greater power is in control, modifies an individual’s
identity so the problem is less stressful and less threatening and, finally, helps people
cope with the emotions arising from the crisis.
Baines (1984) demonstrated that caregiving burdens can be relieved by increasing
one’s spiritual perspective to reframe the experience of grief and loss. A study of
families’ use of religion and spirituality as a psychosocial resource found that 70%
of families agreed that their religious and spiritual beliefs were important in helping
them cope with having a child in the hospital. The authors hypothesize that families
used their spiritual beliefs to help them appraise and give meaning to the stress of
having a hospitalized child. They further found that the families own religious and
spiritual beliefs had the largest positive relationship to families’ use of their beliefs
as a psychosocial resource.
Kaye and Robinson’s (1994) study of caregivers of persons with Alzheimer’s
disease found that the well-being of female caregivers is affected by confronting end-
of-life issues. Confronting issues of mortality and loss may enhance the importance of
spirituality in the individual’s life (Reed 1994). Other authors suggest that caregiving
results in increased feelings of depression and need for social support (Kuhlman et al.
1991; Lindgren 1993). Spirituality was shown to improve depression and enhance
social support among caregiving wives (Kaye and Robinson 1994). Robinson and
Kaye further described spiritual practices that the caregivers utilized which included:
• Talking with friends and family about spiritual matters.
• Reading spiritually related material.
• Engaging in private prayer.
• Seeking spiritual guidance.
Caregivers further described spirituality as important in everyday life, forgiveness
as an important part of spirituality, and feeling close to God or a higher power in
prayer, worship, or important moments in life.
Table 11.4 Coping strategies. Living each day as it comes

(From Pelletier-Hibbert and Finding positive meaning
Sohi 2001) Hoping for a good outcome
Drawing support from their faith in God
Chang et al. (1998) in a study examining the factors that influence and are influ-
enced by religious/spiritual coping among those providing care for disabled adults,
showed that religious/spiritual coping reduces symptoms of depression and role sub-
mersion. This effect is due to higher relationship quality. The authors hypothesize
that religion and spirituality may play a role in sustaining human relationships that
are often strained by the necessities of providing care for others. This study speaks
to the relational aspects of spirituality.
Living with uncertainty, people with chronic illness including cancer, can con-
tribute to stress in the lives of patients and caregivers. It has been shown to be a
source of stress for renal patients (Ferrans and Powers 1993). The response of family
members living with uncertainty associated with a chronic illness in a loved one
has been negative (Pelletier-Hibbert and Sohi 2001). In one study of caregivers of
patients with HIV, living in the present moment became the “anchor in the lives
of many caregivers as they struggled with the uncertain future and focused on the
present” (Brown and Powell-Cope 1991). The concept of living in the present mo-
ment is found in religious traditions and in spiritual programs such as the 12-step
program (Alcoholics Anonymous World Services 1976). Nyamathi (1987) studied
spouses of patients on hemodialysis or postmyocardial infarct and found that both
groups of spouses shared two coping mechanisms: maintaining control over a sit-
uation and finding hope. Srivastava (1988) found in a study of spouses of patients
on hemodialysis that accepting the situation as is, praying and finding more about
the situation were the highest ranked coping strategies. A focus group analysis of
family member of patients on hemo- and peritoneal-dialysis found that uncertainty
related to prognosis and potential loss was the highest source of stress for the family
members (Pelletier-Hibbert and Sohi 2001). Coping strategies included (Table 11.4).
Other authors have looked at the role of religion and/or spirituality as helping
with coping. Segall and Wykle (1989) found religion to be the major form of coping
among the Black caregivers in their study of African-American family members of
patients with dementia. Richardson and Sistler’s (1999) study of African-American
caregivers of patients with dementia found religion to be a major coping strategy,
including church attendance, prayer, belief in God, Bible study, prayer meetings,
and social support. In a mixed quantitative and qualitative study, Waters et al. (2005)
found that spirituality played an essential role in the spiritual and social lives of many
American caregivers and in how much global caregiver role strain was experienced.
Results indicate that the caregiver’s level of spirituality did not affect global strain,
however, the caregiver’s ethnicity made a difference in the response to global strain
and the level of spirituality. The caregivers noted three major themes in helping them
cope with caregiving burdens:
212 C. M. Puchalski
• Biblical instruction provides guidance.

• Prayer provides inner strength.
• Morals, cultural and family values are inherent in spiritual beliefs.
The authors conclude that while the quantitative findings reveal a weak link between
caregiver spirituality and global strain, the qualitative findings provide support that
spiritual beliefs might moderate the cancer caregiver’s overall strain.
Pierce (2001) examined caring and expressions of spirituality in African-
American family caregivers of people with stroke. Caring was described as:
• A filial ethereal value.
• Self-contemplation.
• Motivation for a philosophical introspection.
• Filial piety.
• Living in the moment and hoping for the future.
• Purpose.
• Motivation that came from the approval by care recipients.
• Christian piety.
Thus, the commitment to care for a person with a chronic illness such as stroke
was based on the values of commitment, love and affection, and on spiritual values
of connection, religious values and meaning, and purpose. It is likely these same
values are relevant in the lives of caregivers of patients with cancer. Jones et al.
(2002), in a study of Asian-American women caregivers of elderly parents, found
that the women approached their caregiving challenges with devout commitment
to filial responsibility. They described being “grateful for the love and care their
parents gave them and wanting to give back to their parents.” Love and respect
were a major part of the commitment. The authors show how connection with inner
strength and with their life purpose might help in coping with caregiving demands.
Women identified inner strength as a primary personal resource that enabled them
to deal with the demands of caregiving. Moloney (1995) analyzed older women’s
handling of difficult situations and found that connecting with their inner selves
empowered women to integrate into the caregiving experience, to derive meaning
from the experience, and to grow personally. These studies reflect the importance of
cultural, religious, and spiritual values in how cancer caregivers come to understand
their roles and how they cope with stress.
Forbes (1994) examined the relationship between caregiver’s and patient’s con-
cept of spirituality measured as spiritual well-being. She found a strong correlation
between the caregiver’s spiritual well-being and the caregiver’s perception of the
patient’s spiritual well-being, suggesting the effect of the relationship of patient to
caregiver as influential in the caregiver’s spiritual well-being. Forbes suggests that
highly significant correlations between the spiritual well-being of the caregiver and
that of the patient imply that a spiritual bonding occurs. Prayer was noted as a
significant coping mechanism for caregivers.
There has also been some work done in the area of compassion fatigue which
is a form of burnout. It affects people who are exposed to the suffering of others,
such physicians, nurses, social workers, emergency service personnel, chaplains, and
those in the caring professions. Healthcare professionals with compassion fatigue
find it more difficult to continue giving of themselves to their patients. They be-
come withdrawn and find it difficult to continue being emphatic and compassionate.
Some of the causes of compassion fatigue that have been cited include the increased
demands of managed care, increased paperwork, longer hours, and smaller staff
support (Pfifferling and Gulley 2000). Compassion fatigue can result in poor job
performance, low self-esteem, increased illness, and disillusionment. Sometimes it
can force people to leave their professions. Due to the intense nature of caring for
an individual with cancer and the repeated or often prolonged periods of required
care, this may be particularly true for professional caregivers who work with cancer
patients and their families.
Some ways to deal with compassion fatigue are support groups, counseling, and
talking with friends and colleagues (Joslyn 2002). Most physicians and other health-
care professionals chose medicine and healthcare because of a desire to help others
and to connect to others. When system stresses force healthcare professionals to rush
through patient visits, or do tasks with patients rapidly because of mounding paper
work, then those professionals begin to feel they are not doing what they were called
to do in the first place. Spirituality can also help healthcare professionals with com-
passion fatigue by giving them a way to rekindle their calling to their professional
lives and by giving them a spiritual practice to help sustain them in the midst of
stress. Thus, focusing on the spiritual needs of cancer patients brings healthcare pro-
fessionals back to the root of their work, i.e., holistic, patient-centered care rooted in
service. The attention to their own sense of meaning and purpose and the intentional
integration of that meaning and purpose into their professional lives sustains them
in the midst of stress. Spiritual practices, such as meditation, prayer, ritual, journal-
ing, or experiencing beauty in the arts and music, can further nurture the healthcare
professional in their lives.
Spirituality in Clinical Practice
Today, medical educators are recognizing the importance of spirituality and medicine
and are beginning to ask patients and their families about their spiritual beliefs (Levin
et al. 1997). There are many ethical reasons to include spirituality in the care of
cancer patients and their families (Astrow et al. 2001; Post et al. 2000; Puchalski
2002). There are ethical standards in medicine, nursing, and social work that speak
to the obligation of the healthcare professional to attend to all dimensions of the
patient’s care—the spiritual as well as the physical and psychosocial—as grounded
in the biopsychosocial model of care (Sulmasy 2002). The American College of
Physicians consensus panel determined that it is the physician’s obligation to attend to
all dimensions of a patient’s suffering, including the spiritual or existential suffering
(Lindgren 1993; Lo et al. 1999).
214 C. M. Puchalski
Table 11.5 The role of a chaplain. (From VandeCreek and Burton 2001)
When religious beliefs and practices are tightly interwoven with cultural contexts, chaplains
constitute a powerful reminder of the healing, sustaining, guiding, and reconciling power of
religious faith
Professional chaplains reach across faith group boundaries and do not proselytize
They provide supportive spiritual care through empathic listening, demonstrating an
understanding of persons in distress
Professional chaplains serve as members of patient care teams
Professional chaplains design and lead religious ceremonies of worship and ritual
Professional chaplains lead or participate in healthcare ethics programs
Professional chaplains educate the healthcare team and community regarding the relationship of
religious and spiritual issues to institutional services
Professional chaplains act as mediator and reconciler for those who need a voice in the healthcare
system
Professional chaplains may serve as contact persons to arrange assessment for the appropriateness
and coordination of complementary therapies
Professional chaplains and their certifying organizations encourage and support research activities
to assess the effectiveness of providing spiritual care
It is also important to recognize that spirituality in the healthcare setting of cancer

patients and their families is not in any one person’s domain; physicians, nurses,
social workers, psychologists, and chaplains can all deal with patient spirituality.
However, most physicians are not trained to deal with complex spiritual crises and
conflicts, while chaplains and other spiritual caregivers are trained in spiritual di-
rectives. Therefore, it is important that physicians and other care providers obtain a
spiritual history as a way of inquiry about spiritual issues that might impact a cancer
patient and also recognize when to refer to these specialists.
Nurse In the nursing code of ethics, it states that the nurse must promote an envi-
ronment in which the human rights, values, customs, and spiritual beliefs of the in-
dividual, family, and community are respected (American Nurse Association 2001).
It is recognized that nursing knowledge, skill, and experience are ineffectual if not
accompanied by a caring attitude and one where the nurse is fully present to the
patients.
Social worker Since the 1980s, social work curricula included spirituality and reli-
gion in their educational and practice guidelines because of a commitment to cultural
sensitivity and because social work is grounded in a holistic view of personhood. The
social work profession grew out of concerns rooted in the religious doctrine of love
for one’s neighbor (Loewenberg 1988). Healthcare in the United States also grew out
of religious values rooted in service to others. Hence, compassionate holistic care is
the foundation of healthcare in the United States.
Chaplain In recent years, the chaplain has become an increasingly important mem-
ber of the cancer healthcare team. Traditionally, the role of the chaplain was
sacramental, that is, to administer to the cancer patient certain prayers and rites
particular to the patient’s religion, such as communion or unction. Today the role
of a chaplain is much broader (VandeCreek and Burton 2001; see Table 11.5). The
chaplain represents an extension of the cancer patient’s personal and community

support system, as well as a source of spiritual support for the patient (Puchalski and
Sandoval 2003). When the chaplain has a regular presence in a healthcare setting,
the opportunity exists to provide support to the staff as well.
It is our spiritual side that formulates the questions dealing with ultimate mean-
ing and purpose, questions for which medicine and science have no answers. These
questions require a unique language, in which symbolism, story, and ritual are in-
volved. It is the chaplain who has the expertise in this form of communication and,
therefore, is able to address the questions. Some of these questions and concerns
might be stated in the language of faith. Here, the cancer patient might invoke God
and, in this instance, statements of faith would be used to deal with the questions.
At other times, questions dealing with the purpose of one’s life might be more ap-
propriately answered in existential terms. The chaplain can deal with these issues in
terms of how the world works, how God works, and what we consider the essence,
or meaning, of life (Handzo 1990). The chaplain also ministers to the family of in-
dividuals with cancer and the professional caregivers who treat them. As mentioned
above, caregiving can provoke spiritual questions in all caregivers and can give rise
to stress and existential distress. By attending to the spiritual needs of personal and
professional cancer caregivers, chaplains help all members of the care team cope
with stress, suffering, and loss.
Finally, the inclusion of spirituality in care is central to the precepts of patient-
centered care, in that spirituality and religion can impact shared decision-making,
good care involves respect for cancer patients’ values and beliefs, and involvement of
a larger community of caregivers (such as faith-based communities) is often important
in good patient care (Institute for Alternative Futures 2004).
Ethical/Clinical Considerations
There are other ethical and clinical factors that support the inclusion of spirituality into
the care of patients and families. Spirituality, religion, culture, race, ethnicity, family
dynamics, socioeconomic status, and education level are some of the factors that may
affect one’s understandings and beliefs about illness, suffering, pain, loss, dying, and
coping (Talemantes and Espino 1995). People especially come to understand their
health, illness, and dying as well as those of their loved ones with cancer or cancer
patients through their beliefs, cultural backgrounds, past experience, and values.
Lukoff et al. (1995) note, “The religious and spiritual dimensions of life are among
the most important cultural factors structuring human experience, beliefs, values and
behaviors as well as illness patterns.” The effect of stress depends on how people,
including cancer patients and their families and professional caregivers, perceive an
event (McCubbin and Patterson 1983).
Religious convictions/beliefs may affect healthcare decision-making. Many med-
ical decisions are affected by the cancer patient’s religious and cultural beliefs:
whether to turn a ventilator off or use of a feeding tube, blood transfusions, etc.
216 C. M. Puchalski
(University of Virginia Health Center 1997). One study found that 62% of African
Americans would prefer to die at home rather than the hospital, compared to 81% of
Euro Americans who would prefer to die at home (Neubauer and Hamilton 1990).
In another study, ethnic/racial differences in utilization of services at St. Luke’s
Palliative Care Service in New York were great (Pauling-Kaplan and O’Conner
1989). Many religious organizations have published material on ethical and religious
guidelines for healthcare practices (Cohen et al. 2000; United States Conference of
Catholic Bishops 2001; University of Virginia Health Services 1997).
Rituals and norms surrounding the process of dying and death come from cultural,
religious and family values, attitudes, and beliefs. Kagawa-Singer (1998) indicates
the importance for oncology nurses to be sensitive to the diverse cultural rituals
surrounding death and mourning practices. Since culture, religion, and spirituality
give people beliefs, values, and ways of behaving, these can impact how death from
cancer is handled and ritualized.
As discussed above, for many cancer patients, spirituality is an important dimen-
sion of their lives and a way that people cope with suffering (Puchalski 2001, 2002).
So the care of the cancer patient should include spiritual care (Kavanaugh 1996; Lo
et al. 2002; Puchalski 2000; Sullivan 1989). Values, wishes, and goals provide a
framework for cancer treatment decisions as well as for spiritual work (O’Gorman
2002).
Clinical Implications
It is important to include a spiritual assessment or history as part of the overall

clinical assessment of a cancer patient and his family. This assists in determining
the cancer patient’s spiritual needs and resources and the most appropriate spiritual
care as well as enhancing overall caregiving (Block 2001; Bullis 1996; Lo et al.
2002). One concrete method for beginning the process of incorporating spiritual
issues into one’s clinical practice is to include a spiritual assessment when taking the
cancer patient’s social history. The acronym FICA—Faith and belief, Importance,
Community, Address in care—can be helpful for structuring an interview regarding
a cancer patient’s or family member’s spiritual views (Table 11.6; Puchalski 2000).
Performing a spiritual assessment has been included in coursework on spirituality
and medicine and is performed by many practicing physicians and other healthcare
providers in the United States (Borneman et al. 2010). The spiritual assessment
emphasizes the practice of compassion with one’s patients and helps the clinician
learn to integrate patient’s spiritual concerns into the therapeutic plans. Clinicians
are encouraged to make referrals to chaplains when appropriate. Physicians and
other healthcare providers should strive to discuss cancer patient’s and their familie’s
spiritual concerns in a respectful manner and as directed by the patient. The privacy
of others regarding matters of spirituality and religion must always be respected.
Care providers should not impose their beliefs on the patients and families.
Table 11.6 Spiritual assessment tool. (From Puchalski and Romer 2000, © 1996 Christina
Puchalski, MD)
An acronym that can be used to remember what is asked in a spiritual history is
F: Faith or beliefs
I: Importance and influence
C: Community
A: Address
Some specific questions you can use to discuss these issues are
F: What is your faith or belief?
Do you consider yourself spiritual or religious?
What things do you believe in that give meaning to your life?
I: Is it important in your life?
What influence does it have on how you take care of yourself?
How have your beliefs influenced your behavior during this illness?
What role do your beliefs play in regaining your health?
C: Are you part of a spiritual or religious community?
Is this of support to you and how?
Is there a person or group of people you really love or who are really important to you?
A: How would you like me, your healthcare provider, to address these issues in your healthcare?
General recommendations when taking a spiritual history
Consider spirituality as a potentially important component of every patient’s physical well-being
and mental health
Address spirituality at each complete physical examination and continue addressing it at
follow-up visits if appropriate. In patient care, spirituality is an ongoing issue
Respect a patient’s privacy regarding spiritual beliefs; don’t impose your beliefs on others
Make referrals to chaplains, spiritual directors, or community resources as appropriate
Be aware that your own spiritual beliefs will help you personally and will overflow in your
encounters with those for whom you care to make the doctor-patient encounter a more
humanistic one
Once a spiritual assessment has been made, then the appropriate spiritual interven-
tion should be offered. While spiritual and religious interventions can be provided
by any clinician, integrating a pastoral care provider in the healthcare team will
ensure that the team becomes familiar with religious and spiritual issues and that
patient’s spiritual needs are met. Some examples of spiritual interventions are: medi-
tation, guided imagery, art, journaling, spiritual direction, pastoral counseling, yoga,
religious ritual, or prayer.
Spiritual care emphasizes the importance of the relationship between two people.
The physician may be the professional expert in most of the encounters, however,
the physician is still a human being. By relating from our humanness we can help
to form deeper and more meaningful connections with our cancer patients. What
this requires is an awareness of the healthcare provider’s own values, beliefs, and
attitudes, particularly toward the physician’s own mortality. By confronting one’s
own mortality, one can be better able to understand what the cancer patient is facing.
Furthermore, there needs to be recognition that a personal or professional caregiver’s
own cultural, religious, and spiritual beliefs and values can impact care for the pa-
tient. To be able to recognize another’s spiritual-cultural values and beliefs, cancer
caregivers should possess some self-awareness of their own. Thus, self-reflection on
218 C. M. Puchalski
one’s spiritual beliefs by family and personal caregivers as well as professional care-
givers is important for understanding the cancer patient. Also, the stress of working
with seriously ill and dying cancer patients can be better handled by an attentiveness
to one’s own spiritual and values framework. Many physicians and other healthcare
providers speak of their own spiritual practices and how those practices help them
in their ability to deliver good spiritual and, in fact, good medical care. They further
note the importance of their own spiritual practices in self-care (Puchalski 2000).
Recommendations for Research, Education, and Clinical

Practice and Policy
Research
The research to date demonstrates that spirituality, expressed in many different ways
such as meaning and purpose, relationship, religion, or other spiritual beliefs, helps
many cancer patients and caregivers deal with this serious illness and its caregiving
demands. However, this research field is relatively new and, therefore, there is a
paucity of work in the area of spirituality and caregivers. There is a lot of work on
stress factors in caregiving, on what types of coping strategies cancer caregivers use,
and on healthcare outcomes in cancer caregivers, but researchers have not included
spirituality as one of the multiple dimensions that may enhance cancer caregiver
well-being. There is little research on the role of spirituality in professional care-
givers in general and of cancer patients and their families specifically. Furthermore,
there are little data on the different expressions of spirituality and their effects for
cancer caregivers. The more detailed mechanisms for how spirituality helps cancer
caregivers and what types of spiritual interventions might work are yet to be thor-
oughly investigated. Some specific research questions that come from the research
summarized in this document on cancer caregivers include:
• Study the various complex interrelationships among spirituality related and well-
being variables.
• Investigate potential mechanisms for some of the outcomes and associations
observed in studies of cancer patients and their caregivers.
• Explore cancer patient and caregiver variables, such as age, gender, ethnic or
religious background, and spiritual practice patterns with their potential influences
on spirituality.
• Clarify spiritually related variables, such as mediators, moderators, or main effects
in cancer caregiving.
• Test specific spiritual interventions on cancer caregiver outcomes, including well-
being.
• Document the effectiveness of a spiritual perspective on the lives of cancer
caregivers.
• Study filial caregiving, examination of the relationships between filial values,

the cancer caregiving process, and outcomes in families of diverse cultural and
religious backgrounds.
• Examine the importance of finding meaning and purpose in cancer caregiving and
how that affects health and stress outcomes in personal and professional cancer
caregivers.
• Document the role of parish nurses in caring for and supporting cancer caregivers.
• Utilize faith or culturally based groups as helping networks for cancer caregivers.
• Document the role of volunteer lay groups as spiritual support to cancer caregivers.
• Study the roles of various professional caregivers (physicians, nurses, social work-
ers, psychologists, chaplains, aids) in delivery of spiritual care to cancer patients
and caregivers.
• Define models for living with and coping with the uncertainty of a cancer diagnosis
and treatment.
• Examine the roles of spiritual, religious, and cultural rituals in cancer caregiver’s
lives, specifically how the strategies assist in dealing with uncertainty, stress, and
loss.
Education
As mentioned above, there has been tremendous progress in the medical education of
physicians in medical school and residency program with regard to training doctors
how to address spiritual issues and sufferings with cancer patients. In these courses,
medical students and residents learn:
• The data indicating spirituality are important to cancer patients in coping and
about outcomes.
• Role of cultural and spiritual ritual.
• How to create trusting environments where cancer patients can share spiritual
issues if they chose.
• How to do a spiritual assessment with a cancer patient and their caregiver.
• How to work with interdisciplinary teams, including chaplains, clergy, and
culturally based healers.
• How to address and respond to cancer patient’s spiritual needs.
• How to recognize spiritual distress and pain in cancer patients and their caregivers.
• How to recognize the cancer patient’s inner resources of strength, such as hope.
• How to integrate spirituality into the cancer treatment plan, as appropriate.
• Ethical boundaries and issues related to spirituality.
• Case formulation with regard to spirituality as part of whole patient care
(Association of American Medical Colleges 1999).
Many medical schools and residency programs are also focused on self-care of the
professional caregiver, looking at the physician’s own spiritual beliefs and values
and how that affects the physician and those for whom the physician cares. This
220 C. M. Puchalski
curriculum is being expanded to all the different specialties, including oncology.

Elements of this curriculum are being expanded and should include not just the
cancer patient, but also the family and friends of cancer patients (Puchalski 2006).
Social work has also developed curricula in religion, spirituality, and health,
which are offered in some training programs. Most of these courses are taught in
the context of cultural competency and holistic care (Sheridan and Hemert 1999).
A survey of 132 baccalaureate nursing programs in the United States revealed that
few schools had a defined curriculum in spiritual care (Callister et al. 2004; Purnell
et al. 2004). Although most nurses believe spiritual care is important, most feel un-
prepared because there is little in their curricula on spiritual interventions (McEwen
2004). Topics to include in the curriculum include establishing a trusting relation-
ship, providing a supportive spiritual environment, responding to patient’s spiritual
needs, and integrating spirituality into the care plan, as well as specific topics related
to illnesses or life situation, such as cancer or crisis (Callister et al. 2004).
There needs to be standardized and tested training programs for all professions,
including physicians, nurses, social workers, home health nurses and aids, physi-
cal and occupational therapists, and psychologists as well as family caregivers. In
addition, an increased recognition of the role of spiritual care providers, such as
chaplains, pastoral counselors, spiritual directors, and clergy and ways in which the
healthcare teams can include the spiritual care providers for both cancer patients and
their families, should be emphasized. Education of clergy and religious leaders on
the specific needs of cancer caregivers is important. As more research is done on
spiritual interventions, professionals can be educated about these interventions and
how to use them to better help cancer patients and caregivers.
There are several training programs including Stephen’s Ministry and Zen Bud-
dhist Hospice in San Francisco, California, that train lay volunteers on being spiritual
companions to the dying and seriously ill, including patients who have cancer. One
of these is being studied by our group and Last Acts (Puchalski 2003). While most of
these address patients and families secondary to family, it would be important to de-
velop training programs specifically for a companion to the family caregiver. In this
way, the family caregiver is recognized as the person in need of spiritual support for
themselves and not just as extensions of the patient. Hospice is an excellent model of
integrated care for patients and families. Many hospices have family support groups
and bereavement follow-up care. However, there is still a need in hospices for spe-
cific training programs in spirituality (Larson 1997). Support groups for family in
faith-based, community cancer centers and hospitals would be beneficial.
Finally, there need to be workshops, literature, and resources developed for fam-
ily cancer caregivers with regard to spirituality in their lives, how their spirituality
affects them, and their stress, their ability to cope with caregiving, and, ultimately,
with uncertainty. Examples of helpful resources include specific counseling sessions
dealing with spiritual issues, retreats for caregivers, pamphlets, Web-based courses,
and self-spiritual assessment tools (Puchalski 2002; see Table 11.7). Education on
pastoral care providers and what they do to help cancer caregivers with their spiritual
issues would be important since many people do not know what these professionals
do.
Table 11.7 FICA for self-assessment. (© 1996 Christina Puchalski, MD)

FICA: A spiritual self-assessment tool. The acronym FICA can help structure questions in taking
a personal spiritual history
F: Do I have a spiritual belief that helps me cope with stress? With illness? What gives my life
meaning?
I: Is this belief important to me? Does it influence how I think about my health and illness? Does
it influence my healthcare decisions?
C: Do I belong to a spiritual community (church, temple, mosque, or other group)? Am I happy
there? Do I need to do more with the community? Do I need to search for another community?
If I don’t have a community, would it help me if I found one?
A: What should be my action plan? What changes do I need to make? Are there spiritual practices
I want to develop? Would it help me to see a chaplain, spiritual director, or pastoral counselor?
As all these programs are being developed, it is important to conduct ongoing

evaluation to ensure the training programs are effective and long-lasting.
Clinical Practice and Policy
Hospitals, hospices, long-term care facilities, and outpatient clinical sites need to en-
dorse the integration of spirituality, not only for cancer patient care, but also for family
and professional caregivers. This means endorsing and offering training courses,
sponsoring research, scheduling retreats and discussion groups, and providing pas-
toral care services. Families and friends of cancer patients need to be recognized as
persons in need of attention and care separate from the patient. Therefore, funding
needs to be allocated to ensure a strong, fully staffed pastoral care department in all
sites, including home-based programs that serve not only the patients, but also the
family and staff/professional cancer caregivers. Spiritual care in the broad sense of
compassionate presence, caring, taking a spiritual assessment, listening to patient’s
and caregiver’s spiritual concerns, and helping implement intervention that might be
helpful should be done by all professional and personal caregivers. However, more
in-depth spiritual care needs to be done by trained spiritual care providers, i.e., the
pastoral care team. In the ideal setting, all interdisciplinary teams should include
a chaplain so that spiritual care is coordinated. There also need to be spiritual care
competencies to which all healthcare professionals adhere to ensure optimum patient
care.
Funding should be directed at training programs and resources for cancer staff
and family caregivers. Caregivers need to be supported in their caring of others,
whether in the personal or professional role. Professional cancer caregivers are under
tremendous stress and face many of the same issues with which family caregivers
deal. All clinical sites should recognize that our work is essentially spiritual: We are
all in service to others and, as such, in the unique professions of walking with others
in the midst of their suffering. We have the professional obligation to put other’s
needs ahead of our own and be fully present to our patients and their families. This
is particularly challenging given that healthcare systems today are being ravaged
222 C. M. Puchalski
Table 11.8 Resources. (© Puchalski 2002)

George Washington Institute for Spirituality and Health, George Washington University
(www.gwish.org)
Center for the Study of Religion/Spirituality and Health, Duke University
(www.dukespiritualityandhealth.org)
Conversations in Care (www.conversationsincare.org)
Partners in Care Foundation (www.picf.org)
Partnership for Caring, Inc. (www.partnershipforcaring.org)
by the turbulent times of economic pressures and change. For the most part, the
healthcare system is being driven by economic concerns rather than or in addition to
values-centered concerns. Thus, it is often a struggle for healthcare professionals to
take the time to be fully present to cancer patients and their families.
It is critical that we return medicine to its spiritual roots and develop systems that
are caring for others, including staff, and that place priority on values and mission.
This can be manifested by cancer care systems that create an atmosphere where
money is not the bottom line, however, patient, family, and staff satisfaction is what
is measured and honored. Some ways of beginning the process of change include:
• Support from top administrators.
• Retreats and education programs for families and staff.
• Pastoral care services for patients, families and staff.
• Funding directed at spiritual services.
• Support for research projects in spirituality.
• Enabling rituals to take place that help families, patients, and staff.
• Providing rooms for meditation and ritual.
• Education of hospital administrators, government officials, and religious leaders
so that they can recognize the needs of family and professional cancer caregivers.
Conclusion
Spirituality can be an important dimension in the lives of cancer patients and their
family and professional caregivers, particularly when dealing with the chronicity,
stress, and suffering frequently associated with a cancer diagnosis. Spirituality is
an aspect of all human beings that seeks to find meaning in life and, hence, a way
that people may heal. All care providers—doctors, nurses, chaplains, psychologists,
social workers, therapists, family, and faith communities—can participate in this
dimension of patient and caregiver life. Cancer care providers should learn to use ap-
propriate assessment tools and interventions in care plans. Personal and professional
cancer caregivers should reflect on their own spirituality and how their beliefs and
values affect their life, their coping with stress, and their relationship with others,
especially those for whom they care. Each professional and family caregiver deals
with spiritual issues in a different way. By working together as a team, we can ensure
that cancer patients, our loved ones with cancer, family caregivers who give so much
of themselves, and professional caregivers who specialize in oncology participate

and create the best possible compassionate, caring healthcare system to support the
needs of all cancer caregivers and patients. In order to do this, it is important that
we develop research and education agendas that can support the changes needed in
both the healthcare system and society, thus ensuring that care is optimal for families
touched by cancer (Table 11.8).
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Chapter 12
The Economics of Cancer Care: Implications
for Family Caregivers
Dee Baldwin
Evidence is mounting on the escalating costs of cancer care associated with family
members who provide care to their loved one with cancer (Grunfeld et al. 2004;
Moore 1999; Muurinen 1986). With a few exceptions, past research on the cost
of cancer has been restricted to studying treatment, screening, or prevention costs
(Sherman et al. 2001; Stommel et al. 1993). The majority of research related to the
costs of cancer care for family caregivers has been associated with direct medical
costs, and data from insurance companies, hospitals, and Medicare files have yielded
significant findings. However, these same data sources have not been useful for
determining the indirect costs borne by patients and their families. As a result, there
is a growing need to capture the comprehensiveness of nonmedical costs associated
with cancer care (Moore 1999; Sherman et al. 2001; Stommel et al. 1993).
According to Stommel et al. (1993), “a more comprehensive view of the costs
of cancer care would include the financial impact on the family of the patient and
go beyond the costs of medical treatment, screening or prevention” (p. 1867). They
suggest that there are three important components of family costs that are frequently
subjected to neglect: (1) direct costs such as out-of-pocket cash expenditures for
services not covered by third-party payers; (2) indirect costs associated with forgone
earning opportunities resulting from the illness; and (3) indirect costs associated
with foregone household production and/or leisure time. Estimates of these costs
are greatly needed given the current trends in health care and rising cancer costs
(Sherman et al. 2001; Stommel et al. 1993). According to Sherman et al., out-of-
pocket expenses engender significant financial concerns to patients with cancer and
their family caregivers.
This chapter focuses on the cancer costs associated with family caregiving. The
chapter: (a) describes current trends impacting the economics of cancer care, (b)
discuss existing direct and indirect costs associated with cancer care, (c) delineates
D. Baldwin ()
Georgia State University, Downtown Atlanta, GA, USA
University of North Carolina at Charlotte, 9201 University City Blvd., CHHS 449B,
Charlotte, NC 28223-0001, USA

230 D. Baldwin
costs issues identified by family caregivers as patients with cancer live beyond the
initial diagnosis and treatment, and (d) provide strategies and solutions to assist
family caregivers with payment issues. The chapter concludes with recommendations
for future study including research, education, and policy development.
Background
Family members and other relatives play a significant role in the cancer patient’s
overall well-being and quality of life through social and financial support. Family
members are irrevocably changed by the individual’s illness while experiencing a
concomitant financial challenge (Moore 1999; Sherman et al. 2001; Wein 2000).
While the role that family caregivers play in supporting their family members di-
agnosed with cancer is well documented in the literature, the financial burden and
impact is less clearly understood (Grunfeld et al. 2004). Health care is expensive
and money can serve as a metaphor for value, control, and power (Wein 2000). At
the outset, money can be viewed as no object and no cost is too great. However, as
the disease progresses, financial resources may dwindle and the lack of money can
come to be seen as a metaphor for anger, loss of hope, and exhaustion (Sherman
et al. 2001; Wein 2000). Resources beyond health insurance, which help to defray
the indirect costs associated with cancer care, become critical as cancer costs rise for
these patients (Moore 1999; Sherman et al. 2001; Wein 2000).
Another reality for the family caregiver is that providing care to the family member
with cancer is time consuming, demanding, and many times frustrating, leaving little
opportunity for other household and leisure activities (Grunfeld et al. 2004; Stommel
et al. 1993). Role fatigue, often associated with confinement within the home and
restriction on activities outside the home, missed days from work, and mental and
physical illness as a result of being a caregiver are a few of the issues experienced by
family caregivers. It is well documented that the caregivers often get ill as a result
of providing care to their terminally ill loved one (Grunfeld et al. 2004; Payne et al.
1999). However, the costs of the labor associated with this care and the financial
burden for the family are frequently not calculated. If the cost of family labor input
is considered at all, it usually is evaluated in terms of market earnings. Costs incurred
by the relative who leaves or misses work to care for the patient, family members’
transportation to the doctor or hospital, and the frequent necessity for household help
are examples of the cancer family’s uncounted costs.
Many families work through the illness without adequate financial resources. To
illustrate this point, Grunfeld et al. (2004), in a longitudinal study, found that burden
was the most important predictor of both anxiety and depression in family caregivers
caring for family members with breast cancer. They also found that among employed
caregivers, 69% reported an adverse impact related to work, while 77% of family
caregivers missed work during the terminal stage of their loved one’s cancer.
Hayman et al. (2001) argue that controversy continues to exist regarding how
best to value the opportunity cost of caregiver’s time. They suggest using the average
hourly wage of working individuals with similar characteristics as an approach to

measure caregiver time. They also add that since there are no appropriate wage data
for some groups of caregivers, such as the retired elderly, measuring caregiving
time is difficult. Hayman et al. conclude that health care expenditures for family
caregiving are growing and predict they will continue to increase.
Current Status and Trends
Emerging health care trends have the potential for affecting the economics of cancer
care for family caregivers (Brown et al. 2001; Mortenson 1996; National Cancer
Institute [NCI], 2009). Significant gains in fighting the war on cancer were made in
the 1990s (Fleck 1993; Moore 1999; NCI 2009). The cancer death rate in the United
States decreased 2.6% between 1991 and 1995. This decrease in cancer deaths was
the first of its kind since record keeping began in the 1930s (Fleck 1993). While
cancer death rates were declining during the 1990s, health care expenditures were
soaring. In 1960, health care expenditures grew from 4.5% of the U.S. Gross National
Product (GNP) to 14% of the GNP in the 1990s. Health care expenditures broke the
1 trillion mark in 1996. The national cost for cancer care in 1997 was approximately
$ 50 billion. According to the NCI, cancer care treatment accounted for an estimated
$ 104.1 billion in 2006. As a result of these soaring prices, politicians and health
care agencies are looking for ways to trim health care costs at a time when cancer
research is at its most promising.
The emergence of managed care organizations was one response to these esca-
lating costs. Managed care organizations were created to help contain and control
rising costs. This meant that many employers were allowed to change their tradi-
tional health plan insurance benefits to plans in which workers no longer choose
their own physicians, thus restricting and limiting coverage and benefits. For some
cancer patients, this meant that coverage for cancer treatment changed to limited
coverage, and choosing a health care provider became no longer an option. Due to
the lower premiums, many cancer patients were forced to select a physician who was
associated with a preferred provider organization (Fishman et al. 1997).
Other current societal forces that impact the economics of cancer care include
oncology as a specialty area, clinical trials, use of U.S. Food and Drug Administra-
tion (FDA)-approved chemotherapy drugs, outpatient cancer care, prescription drug
costs, and the provision of services for minorities, the elderly, and the poor. These
trends are briefly described next.
Oncology as a Specialty Area From a cost perspective, cancer patients are not
viewed as winners by some hospitals (Du et al. 2000). The specific details of the
problems change frequently, however, the overall picture of cancer care is that it
is expensive and can be long-term. Oncology as a specialty is experiencing several
unfavorable economic conditions: increasing patient volume, growing numbers of
socioeconomically disadvantaged patients needing care, hospital-intensive monitor-
ing throughout treatment, escalating high-tech care costs, and the abundant need
232 D. Baldwin
for psychological interventions (Brown et al. 2001). While there are many cancer-
specific diagnostic-related groups (DRGs) for reimbursement, high reimbursement
DRGs do not necessarily translate into profit for hospitals. For example, the DRG
related to lung cancer is a high-reimbursement DRG, however, the care required for
these patients is long and extensive, causing the hospital to lose money because of
the complexity of the illness (Brown et al. 2001; Fleck 1993). Hospitals are given
incentives to shorten the length of stay to minimize utilization, attempt to attract
patients who are economic winners, and avoid attracting patients who are unable
to pay for care. For the cancer patient who is hospitalized, this could mean early
discharge from the hospital facility, thus transferring care to the family caregiver in
the home environment (O’Mara 2005).
Clinical Trials To advance cancer care, a large number of patients are annually en-
rolled in clinical trials for research. Clinical trials are very costly to the hospital or
clinical facility due to increased laboratory and radiology tests, a need for specializa-
tion and/or a highly educated interdisciplinary team, and higher staff/patient ratios.
There is still much debate over reimbursement for clinical trials and treating cancer
patients with stage III or stage IV disease (Fireman et al. 2000). These patients are
viewed by some as high-risk for financial support and use of health care resources.
According to Rutledge and Stair (1997), “a major barrier for both patients and in-
stitutions to participating in national studies is that third-party payers do not cover
experimental treatment, which includes all research trials” (p. 1598). For cancer
patients and their families, understanding if their insurance plan covers clinical trial
participation is critical. Participation in a clinical trial could help to minimize the
cost of treatment associated with the cancer care.
FDA-Approved Drug Use of Chemotherapy Drugs Cost drivers for the use of
chemotherapy drugs include two major concerns. The first is whether or not new drug
research will be slowed as the snowballing influence of managed care intensifies. The
second is the long-standing need for approval of off-label usage of chemotherapeu-
tic agents. In terms of research and under new FDA rules, anticancer drugs may be
given early, market approval before their effectiveness is conclusively proven if drug
companies can show that the drugs shrink tumors. In addition, the FDA has agreed to
attempt to speed approval of drugs that have already been approved in other countries
(FDA 2009; Fireman et al. 2000).
Off-label usage of chemotherapy drugs is becoming less of an issue as legislation
has been approved across the country to address this problem (FDA 2009; Fleck 1993;
Rutledge and Stair 1997). In the 1980s, the government and insurance companies
began to deny reimbursement for drugs used for indications outside of the package-
insert indications approved by the FDA. In practice, once a drug has received FDA
approval, the pharmaceutical company does not necessarily have to reapply to the
FDA when additional indications for the drug’s use are identified. In the 1990s,
the Association of Community Cancer Centers led an effort to introduce model
legislation requiring insurance companies to use the drug compendia and the peer-
reviewed medical literature in making coverage determinations rather than using the
FDA-labeled indication (Fleck 1993; Rutledge and Stair 1997; FDA 2009). Many
insurance companies will not pay for drugs used for indications that do not fall within
the drug-package insert guidelines (Fleck 1993; Guidry et al. 1998). Cancer patients
on chemotherapy may not be reimbursed for drug coverage if not indicated in their
policies, leaving families to assume medication-related costs that are not covered by
the insurance plan.
Outpatient Cancer Care Outpatient cancer care is another economic issue. The
DRG limits for reimbursement, pressure for early patient discharge, and patient
preference have been strong incentives for the accelerated growth of outpatient cancer
care facilities. The delivery of quality outpatient care has quickly become possible
through advanced technologic support (e.g., vascular access, ambulatory infusion
pumps, etc.; Mortenson 1996).
Management of toxic effects of drugs has become possible on an outpatient basis
by increasing the education and responsibility of patients and their families. This shift
to outpatient care has impacted family caregivers who are providing the majority of
cancer care in outpatient settings. This results in an increase in home health care
costs (Arno et al. 1999; Given et al. 2001; Mortenson 1996) and a shift of more care
responsibilities from the hospital to the family (Hayman et al. 2001; O’Mara 2005).
Patients receiving treatment for cancer, especially chemotherapy, have felt the impact
most heavily. While the shift to outpatient care has increased the need for home health
care, funding for home health care has decreased, making this trend a future crisis
for family caregivers. Administering oral and parenteral medications, performing
wound care, and monitoring signs and symptoms are a few of the more demanding,
yet routine tasks that family caregivers are expected to perform (O’Mara). Family
caregivers not only have to provide more follow-up care in the home, but also worry
about other cost-related issues associated with care, such as transportation to and
from the outpatient setting and job absence (Guidry et al. 1998; Hayman et al.
2001).
Prescription Drug Costs Prescription drug spending is escalating at four times the
rate of overall medical cost inflation (Reed and Hargraves 2003). Reasons for this
increase are numerous, including the production of more sophisticated drugs by phar-
maceutical companies resulting in higher prescription costs, an aging population with
increased drug usage, aggressive drug marketing to consumers and providers, and
the use of drug therapy prior to surgery. It is well recognized that cancer chemother-
apy treatment can last several months, and much longer for patients who respond
favorably. This cumulative cost of treatment can be astronomical for the patient and
family caregiver (Wittes 2004).
A looming issue in cancer care is the exorbitant costs of new cancer drugs. While
some family caregivers will be able to afford these new costs, others will not. Accord-
ing to Reed and Hargraves, working-age African Americans and Latinos are much
more likely than their White counterparts to report they cannot afford all of their
prescription drugs. Uninsured working-age people with chronic conditions are at
particular risk for not being able to afford all of their prescriptions. These vulnerable
groups will be at high risk for problems in paying for their cancer medications as
out-of-pocket drugs costs escalate. The Center for Studying Health System Change
234 D. Baldwin
(Reed and Hargraves 2003) suggests consumers and governmental health plans will
not be able to afford these new cancer drugs given their excessive costs. Several stud-
ies are beginning to show that with the new Medicare law (the government paying
for senior citizens’ drug costs), seniors will have to “foot the bill” for the high costs
of prescription drugs (Connolly and Allen 2005).
Cancer and the Poor Cancer and the poor remain an ongoing economic issue that
impacts the cost of cancer care. Problems of early cancer detection, treatment and
survival, unemployment, inadequate education, substandard housing, chronic mal-
nutrition, and diminished access to medical care disproportionately effect the poor
(Fleck 1993). The expanding number of legal and illegal immigrants entering the
United States is another major factor contributing to the increased number of people
living below the poverty line.
In the well-known study, Cancerin the Economically Disadvantaged, Harold
Freeman (1989), concludes that both cancer incidence and survival are related to
socioeconomic status and that at least 50% of the survival difference is due to late
diagnosis of the economically disadvantaged. Other studies have linked low in-
come with the low utilization of cancer screenings services (Baldwin 1996; Phillips
et al. 1999). According to Schulmeister (1999), the most serious effect of low-
socioeconomic status is the delay in seeking early detection, which results in late
diagnosis and delayed treatment. Late diagnosis usually is related to limited treat-
ment options, resulting in a poorer overall prognosis. For the low-income cancer
patient, the problem is due in part to a low awareness of cancer warning signs and
the inability to pay for recommended preventive health care. Also, some patients first
use nontraditional treatment methods for symptoms, thus delaying formal medical
treatment of their cancer. Explanations for this delay have been associated with feel-
ings of pessimism and fatalism, and a negative belief system (Phillips et al. 1999;
Schulmeister 1999).
While little research is written about family caregivers of cancer patients who
are at the poverty and low-income levels, it is believed that these patients and their
family caregivers will experience the same economic and social pressures as most
other groups, excluding the very wealthy. Money problems for the family and person
experiencing cancer cut across most socioeconomic boundaries, affecting the middle
class as well as the poor. According to Germino and O’Rourke (1996), “regardless of
socioeconomic status, almost all families experiencing cancer and cancer treatment
have financial problems” (p. 86). Nevertheless, cancer care is most burdensome
to those with low incomes, especially if they experience increased out-of-pocket
expenses (Given and Given 1997).
Direct and Indirect Cost Associated with Cancer
Most of the research related to cancer costs for family caregivers has been associ-
ated with direct medical costs. Direct cost is measured by expenditures for medical
procedures and services associated with treatment and care. Medical costs related
to cancer care are widely cited and discussed in the literature (Brown et al. 2001;
Muurinen 1986; Sherman et al. 2001). Cancers of the lung, prostate, breast, and
colon/rectum are responsible for a disproportionate share of burden in terms of both
cancer incidence and mortality (Brown et al. 2002). These cancer sites accounted for
52% of estimated new cancer cases in 1999 and 55% of estimated deaths in 1999,
and their treatment has driven up medical costs. Cancer care continues to use more
hospital dollars than any other diseases, accounting for hospital expenditures of 60–
75% of the total direct cost of cancer treatment compared to 35–50% for all other
illnesses (Brown et al. 2002).
Cost of illness (COI) estimates typically include three main elements: direct cost,
morbidity cost, and mortality cost (Brown et al. 2001). Direct costs are derived
from sources such as the National Medical Expenditure Survey, which provides
disease-specific data on cost per hospital day combined with data on the proportion of
hospital days related to each disease entity from the National Hospital Discharge data
(Cassileth 1979). Recent studies, however, describe other data sources, such as claims
data related to Surveillance, Epidemiology, and End Results (SEER) and Medicare
data sets. According to Chang et al. (2004), “these estimates have limitations pri-
marily related to the source databases” (p. 3524). Morbidity costs are measured by
lost income due to work disability and absenteeism associated with the disease entity
(Brown et al. 2002). In other words, these are wages lost that would have been earned
by patients had they not missed work because of diagnostic procedures, treatment,
or prolonged disability (Cassileth 1979). Morbidity costs are estimated based on
disease-specific work disability as reported to the National Health Interview Survey.
Mortality cost is measured as lost income associated with premature death (Brown
et al. 2001). That is, they are wages that the person would have earned if not for pre-
mature death. These costs are estimated using the human capital approach. According
to Brown and colleagues, “this approach imputes economic value to years of life lost
attributable to the disease category by assigning average age-specific, gender-specific
earnings to the lost years, including the value of household work for individuals not
employed in the formal labor market” (p. 98). The source used to obtain information
about earnings comes from the U.S. Bureau of Labor Statistics.
Indirect costs, typically not measured, are those costs associated with the work
time and output lost by the patient, family, friends, and caring others (Brown and
Fintor 1995). According to Sherman et al. (2001), “by definition, direct nonmedical
costs are expenditures as the result of an illness but are not involved in the direct
purchasing of medical services” (p. 842). These costs are rarely covered by insurance
plans. Services may include travel, lodging, payment for home health aides, and
equipment purchase for items such as support bars in the bathtub (Sherman et al.
2001). The time the patient and/or family members spend visiting the physician,
other health professionals, and hospitalized persons are frequently not included in the
overall cost estimates of the family. Special diets (dietary supplements), equipment,
clothing, and family counseling are a few of the unmeasured cost areas where families
incur out-of-pocket costs associated with care of the cancer patient. Hired labor
and labor provided by family members are also frequently uncounted. Giving up
employment to provide care, transportation related to the distance that a family
236 D. Baldwin
caregiver travels from their residence to a treatment center, and time costs are only
a few costs that are not included in the budget of the family caregiver.
To support this point, Moore (1999), in a study that analyzed breast cancer patients’
out-of-pocket expenses, noted that 60% of the patients and families experienced lost
income associated with a diagnosis of breast cancer. These losses included decreased
monthly wages, use of sick and vacation time, and time without pay. In addition,
women who were self-employed or part of a family business had to rearrange their
time and the time of others to make up for the absence. Moore warns that while loss
of income is not considered an out-of-pocket expense; it does engender a reduction
in liquid assets.
Moreover, Gould (2002) found that returning to work following treatment was
a physical and/or emotional struggle for most low-income women diagnosed with
breast cancer. Following adjuvant treatment, many of these women left their paid
workplaces because of debilitating side effects. Chang et al. (2004), in their study
that estimated the direct and indirect costs of cancer care, found that cancer patients
in the study had notably higher absenteeism than the control (noncancer) group and
cancer caregivers had a mean of 2.2 absence days per month versus a mean for the
controls of 1.4 days per month. These data translate into out-of-pocket expenses and
lost income for family members.
While there is a growing need to accurately capture the indirect costs of cancer
care, major issues surround the assessment of these types of data. For example, a
major problem in assessing indirect costs rests with the use of restricted convenience
samples (Hayman et al. 2001) and methods of data collection (Chang et al. 2004).
Issues related to data collection include comprehensive data bases (Chang et al.
2004), the availability of tools to examine indirect costs (Moore 1999; Sherman
et al. 2001), variability in individuals’ response to cancer and treatment protocols
(Moore 1999), reliable self-report information from patients (Moore 1999; Stommel
et al. 1993), and costs associated with conducting a cost-effectiveness analysis (Du
et al. 2000; Sherman et al. 2001).
Another issue surrounding the economics of cancer care is capturing the costs
of illnesses experienced by family caregivers as a result of caring for their loved
one with cancer. According to O’Mara (2005), becoming a family caregiver is a
random event, with few training programs to help with this endeavor. Many fam-
ily caregivers experience physical conditions and psychological illnesses associated
with stress, coping, and depression as they provide care to their family member
with cancer. Other concerns are a lack of leisure time and emotional support as the
family member with cancer deteriorates. Grunfeld et al. (2004) add that “caregivers
experience substantial psychological morbidity (anxiety and depression) at the onset
of the patient’s palliative illness and a substantial increase in caregiver burden and
depression when the patient reaches a terminal state of the illness” (p. 1797).
Understanding family caregivers and how caregiving affects the family caregiver
remains a critical area for research (Grunfeld et al. 2004; O’Mara 2005). More
importantly, as family caregivers experience emotional and psychological disorders
as a result of the cancer care they provide to their loved one with cancer, incorporating
these care costs will yield a more accurate and comprehensive picture of the overall
cost of cancer care (Vanderwerker et al. 2005). It is both direct and indirect cost
issues that typically contribute to the overall financial burden of the family caregiver.
Cost Issues Identified by Family Caregivers
The diagnosis of cancer in one family member affects all other members of that
family and frequently requires the designation of one member to serve as primary
caregiver (Stommel et al. 1993). Four areas of cost have been cited in the literature
related to costs experienced by family caregivers: patients’ loss of income due to loss
of employment, out-of-pocket expenditures for services, caregiver labor costs (lost
earnings), family labor costs and total costs to family. A brief explanation of these
costs is described next.
Patients’ Loss of Income Cancer survivors many times want and need to work and
to perform in their customary roles after the cancer diagnoses (Bradley et al. 2001).
Returning to work serves as a means for coping, better recovery, and returning to
normalcy. However, according to Bradley and colleagues, the ability to return to work
can vary by cancer site, treatment modality, and characteristics inherent to patients
and their jobs. In general, cancer patients employed in physically demanding jobs
are more likely to quit their employment in comparison to those with sedentary jobs
(Given and Given 1997).
For the family caregiver who belongs to the workforce, a decision to terminate their
employment may occur in order to provide care for the cancer patient. The caregiver’s
age and own health are both likely to play a part in the caregiver’s decision to remain
employed (Muurinen 1986). Increases in care can raise the cost of dropping out of
the labor force for those caregivers who are the sole or major income earners for
their families. According to Muurinen, working caregivers may find it difficult to
maintain both high levels of informal care supply and the supply of normal working
hours. Therefore, many caregivers leave the labor force at the onset of the care
episode. Those who choose to remain employed tend to experience reductions in
working hours, sometimes with consequent income losses. Out of those caregivers
who continued to work 60% report losses of income because of increased absences
from work (Hayman et al. 2001; Muurinen 1986).
Out-of-Pocket Expenditures for Services Mounting research is beginning to expose
the alarming cost of out-of-pocket expenses associated with cancer care. Expenses
incurred by family caregivers for which they have not been reimbursed include pur-
chases of special equipment and supplies, home health aides, medications, hospital
and physician services, and special foods. Additional costs are incurred by the care-
giver who leaves work to care for the patient and to transport the family member to
the doctor or hospital. The frequent necessity for household help is also an example
of the family caregiver’s expenses that are not reflected in their overall care budget
for the cancer patient. Many times the family caregiver cannot always place a dollar
amount to these expenses. In a study conducted by Stommel et al. (1993), higher
238 D. Baldwin
home care costs to families were not attributed to the result of larger cash expen-
ditures. Rather, the largest cost component was viewed as the labor cost associated
with providing the care to the cancer patient, those costs that were attributed to loss
of employment. Chang et al. (2004) add that out-of-pocket costs related to deductible
and copayments paid by caregivers were comparable to wages lost and should be
considered in the overall burden of cancer. Moreover, Hayman et al. (2001) argue that
“the frequency and intensity with which elderly cancer patients undergoing treatment
rely on their families for caregiving is substantial” (p. 3223).
Caregiver Labor Costs (Lost Earnings) Costs associated with caregiver labor
involves hours spent in caring for the family member with cancer, sacrificed em-
ployment, and lost earnings due to missed days at work. Most studies reveal that it is
difficult to evaluate the cost of care that family members provide to patients (Chang
et al. 2004; Stommel et al. 1993). This is due in part because family caregivers do
not attach a market value to the services that they are providing. Moreover, for those
who are not employed, they do not necessarily associate a monetary or wage value to
the service they are providing. Therefore, estimates have to be used in determining
caregiver labor costs. For example, Stommel et al. suggest that when there is an
absence of data on usual activities of family members, then the cost of a provider,
such as a home health aid, may be considered a reasonable approximation of the
wage that one could charge to provide cancer care.
Family Labor Costs Frequently, family caregivers, other than the primary caregiver,
are not factored into the costs of services provided to the family member with can-
cer. These caregivers include someone other than the spouse, such as the children,
cousins, other relatives (aunts and uncles), and friends. One of the issues that often
occur with family caregivers is how knowledgeable they are in caring for the cancer
patient. Frequently, these caregivers are not trained in providing direct patient care.
Therefore, training costs (time away from job or leisure activities) are infrequently
included in the estimates of cancer care. Also, promotions denied, reduced work
effort, and decline in productivity in the home not related to patient care can be ex-
perienced by family caregivers who are not the primary caregiver. These caregivers
need to be included in the overall payment strategies as cancer care is evaluated.
Payment Strategies and Solutions for Family Caregivers
Cancer is an expensive illness. For the ill-prepared family, it can be disastrous and
catastrophic. Families can pay for cancer treatment and care through various payment
options, including Medicare, Medicaid, private insurance, and other commercial pay-
ers. Different regulations govern care and reimbursement under each of these models.
It is important that families understand their insurance coverage since benefits may
vary at different stages in the disease process (American Cancer Society [ACS] 2003;
Cassileth 1979). Even those who are well insured can be financially devastated with
gaps in coverage (Germino and O’Rourke 1996).
Medicare is the federal health insurance program that provides hospital and med-
ical insurance for persons 65 years of age and older, and for those who receive
disability payments from Social Security or railroad retirement. Medicare was es-
tablished by Title XVIII of the Social Security Act in 1965. It is a two-part program,
commonly known and referred to as Part A and Part B. Part A pays for inpatient
hospital services for up to 90 days in a benefit period, plus a lifetime reserve of 60
additional days of hospital care, posthospital care in a skilled nursing facility for up
to 100 days per benefit period so long as the skilled nursing facility follows a hospi-
talization of at least 3 days and the patient is admitted to the skilled nursing facility
within days of the discharge from the hospital. Patients may receive up to 100 home
health visits in a benefit period so long as the home visits follow hospitalization. Part
A also includes home health services, hospice care, and care in Medicare-certified
nursing facilities. Part B of Medicare provides for physicians’ services, diagnostic
services such as laboratory and radiological tests, hospital equipment for use at home,
ambulance services, and outpatient physical therapy (ACS 2003; Cassileth 1979).
Title XIX of the Social Security Act established the Medicaid program. While
Medicare is administered as part of the Social Security System, Medicaid is ad-
ministered by the states and is optional. To receive Medicaid, the cancer patient’s
income and assets must be below a certain level. Under Medicaid, federal assistance
is offered to states that provide medical care coverage for a minimum of specified
basic services for at least everyone receiving federally aided money payments under
any one of the categorical public assistance programs. Federal funds are available
to match state expenditures according to a formula that considers a state’s relative
wealth (ACS 2003; Cassileth 1979). In addition to coverage for categorical public
assistance recipients, the state may choose to cover individuals who are medically
needy. This coverage includes, among others, persons whose income exceeds public
assistance levels but who otherwise would be eligible for public assistance programs
because they are aged, blind, disabled or members of families eligible for aid to
dependent children, and children of families with incomes too low to be eligible for
categorical assistance (ACS 2003; Cassileth 1979).
It should be noted that both Medicaid and Medicare are experiencing severe cuts
(Connolly and Allen 2005; Mortenson 1996). These cuts have the potential to affect
the future of cancer care and increase the financial burden of the family caregivers
if they receive coverage under these plans.
Private insurance organizations provide health care benefits through various plans.
These organizations are typically associated with an individual’s employer who along
with the employee makes contributions to the health insurance plan. These plans
cover hospital services, physicians’ services, diagnostic services, and other benefits.
However, the recent increase in premiums and employees having to share more of
the cost for health care could make it difficult for family caregivers to maintain
their health insurance coverage. Many commercial insurance companies offer health
insurance coverage. Their policies often take the form of major medical insurance
plans and may vary widely in their coverage (ACS 2003; Cassileth 1979; Eisenberg
1979).
240 D. Baldwin
Other solutions for family caregivers include being adequately prepared finan-
cially for a major illness like cancer. This means having knowledge about one’s
insurance plan to ensure adequate health coverage, possessing disability insurance,
and knowing about cancer centers and other community resources. Financial prepara-
tion for a major illness should be a part of every family’s plans. Adequate insurance
coverage includes coverage for hospitalization, outpatient services, radiation and
chemotherapy, and home health services. Some insurance plans even have coverage
for a catastrophic illness. Family caregivers should explore their policy to determine
if they have adequate coverage. Most insurance policies, however, have poor cover-
age for home health care expenses (Stommel et al. 1993), in a time when home health
care abounds. The insurance policy should also be noncancelable, which means that
the insurance cannot be discontinued unless the individual fails to make payments
(Fleck 1993).
For those who cannot afford to pay for cancer costs, the Hill-Burton program
is available. The program was established by Congress in 1946 to provide grants
and loans for construction and modernization to hospitals, nursing homes, and other
health facilities. In return, these facilities agreed to provide treatment to a “reasonable
volume” of persons unable to pay, and to all persons living in the facility’s catchment
area. Eligibility is based on family size and income (ACS 2003). While the program
stopped providing funds in 1997, about 300 health care facilities nationwide are still
obligated to provide free or reduced-cost care. Hill-Burton may cover services not
provided by other governmental programs.
Disability insurance can help protect the family’s income as well as protect the
individual if unable to work. Disability insurance provides the individual with income
at a flat rate and does not take into consideration inflation. Therefore, it is important
that the cancer patient and family caregiver examine their policy to ensure that the
plan will meet household expenses (ACS 2003).
Community resources are available to assist the cancer patient and family care-
giver to help defray the cost of cancer care. While these resources may vary from
community to community, they may also vary in the resources they provide. Many
community groups will have emergency funds to help pay medical bills. Cancer
centers such as the American Cancer Society, National Cancer Institute, and the
Leukemia Society of America may offer free cancer treatment, transportation, and
support programs. Churches and synagogues may also be able to provide cost as-
sistance with such activities as baby-sitting, home care services, and purchasing
of home equipment. Many churches and synagogues will also offer cancer support
groups for the patient and family caregivers (ACS 2003).
While a wealth of support programs exists for the patient and caregiver, few
economic and financial programs are available to help family members manage
and disclose their illness-related financial pressures. Without disclosure, these
illnesses-related demands could cause disharmony in the family leading to nega-
tive consequences for the cancer patient and the caregiver. Family caregivers can
potentially benefit from having a training forum whereby they have an opportunity
to express and share how they manage their finances as one of the illness-related
demands.
Recommendations for the Future
Research
Research in indirect costs associated with cancer care and how these costs impact
family caregivers is a major area for continued research. Most of the research related
to the costs of cancer care for family caregivers has been associated with direct med-
ical costs, which includes mostly hospital cost and doctor bills (Hayman et al. 2001).
However, more research is needed to address the out-of-pocket expenses incurred by
family caregivers as they care for the cancer patient. This research should focus on
elderly patients with cancer (Hayman et al. 2001) and female caregivers. Evidence
is mounting that as the population ages, caregivers of the future will continue to be
female who are caring for elderly relatives. Studies that continue to focus on the fi-
nancial impact of female caregivers as they support the cancer patient will strengthen
this area of research.
Moreover, more longitudinal studies focusing on the economic burden of family
caregivers are needed to better understand the out-of-pocket expenses incurred by
family caregivers. Many studies on the cost burden to caregivers are based on the
surveys of small convenience samples (Chang et al. 2004). Intervention studies with
large randomized sample sizes will expand the research on cost burden to family
members.
Cancer caregivers’ knowledge of providing direct care is also an area of continued
research. According to O’Mara (2005), informal caregiving is an intricate part of
health care and will become a larger factor in the world of decreasing resources.
Unfortunately, the selection of an informal caregiver, like the diagnosis of cancer
itself, is a random event, and no education programs exist to prepare individuals
to be one (O’Mara 2005). Therefore, more research is needed on the development
of educational programs that will assist the informal caregiver in providing direct
care. These educational programs should also include information on identifying
resources (beyond insurance coverage) to support caring for the patient diagnosed
with cancer.
Equally important, research is needed on family labor costs associated with not
only the primary caregiver, however, with all caregivers who provide care to the
cancer patient. Caregivers of adult patients undergoing cancer treatment are usually
spouses, sons and daughters, or sons- and daughters-in-laws, cousins, and friends
who are rarely paid (Hayman et al. 2001). The social and economic burden that these
individuals encounter when caring for the cancer patient is rarely included in the
overall treatment costs of the cancer patient. More research will strengthen this area
of cost analysis.
In addition, little research is written about family caregivers of cancer patients
who are at the poverty and low-income levels. The majority of studies with families
experiencing cancer have been conducted on educated middle-class families. More
studies are needed on the economic issues of cancer and the poor and with different
ethnic/racial groups.
242 D. Baldwin
Furthermore, research related to data sources used to calculate the economic bur-
den on cancer is greatly needed. The economic burden of cancer is usually measured
by cost-of-illness methods developed in the late 1960s and early 1970s (Chang et al.
2004). The primary data source has been national survey information, combined with
claims data. Indirect measures have relied on self-report data related to work disabil-
ity obtained from the National Health Interview Survey (Chang et al. 2004). More
studies using additional data sources to measure indirect costs are greatly needed to
capture a more comprehensive picture that family caregivers portray in care of the
cancer patient. Last, little data exist on the employment experience of people with
cancer who are able to work. More research is needed in this area.
Education
According to the American Association of Caregiver Education (AACE 2005), fam-

ily caregiving is more prevalent than actually documented and growing faster than
anticipated, adding that most Americans will be caregivers for more than one indi-
vidual and more than once before or during their lifetime. AACE points out that these
caregivers may not have accessed the needed information to make wise decisions
about treatment options and cancer care (CancerCare 2012; Tamblyn et al. 2001).
Family caregivers who provide cancer care to their loved one are typically, spouses,
daughters, sons, friends, and other relatives.
While it is well recognized that cancer caregiving places an increased burden on
family caregivers, more national family caregiver education programs are greatly
needed (O’Mara 2005; Pasacreta et al. 2000). Given et al. (2001) suggest that a
major concern expressed by family caregivers is their need for information. Family
caregivers have a need to know more about the signs and symptoms of the cancer dis-
ease, comfort measures, physical care, treatment regimens, household management
procedures, and finances (Given et al. 1994). They also report needing additional
information about how to arrange for activities such as transportation, nutritional
support, coordination of care, and financial activities (Guidry et al. 1998; Given
et al. 1994).
Pasacreta et al. agree that family caregivers need educational programs to help
with the management of their loved one with cancer. To support this notion, they
conducted a study to determine caregiver characteristics before and after attendance
at a family caregiver cancer education program. Upon completion of their education
program, which included psychosocial support, resource identification, and symptom
management for caregivers, participants believed that they were much better well
informed and confident about completing caregiving tasks. Caregivers also believed
that their burden did not worsen as the caretaking tasks increased in intensity because
of the education program.
Bulsa et al. (2004) agree that patients and their family members desire to remain
in control and feel empowered in the management of their cancer care. They suggest
that health care providers work with caregivers in terms of how best to move forward
once the initial diagnosis and shock is over. Given et al. (1994) suggest that positive
outcomes can be achieved for family caregivers if they are embraced as a partner of
the health care team, a team that provides instruction, guidance, and information in
evaluating the home care situation. The health care provider can provide information,
clarify terminology, and help patients understand their treatment options.
Rabow et al. (2004) add that “family caregiving is typically at the core of what
sustains patients at the end of life” (p. 483). They offer several recommendations for
conducting a family meeting when the patient is unable to participate. This infor-
mation includes providing family caregivers with medical updates on the patient’s
condition, dealing with decisions that need to be made, and education about pallia-
tive care. Rabow et al. suggest that physicians, as members of the interdisciplinary
home care team, can play a key role in the multidisciplinary referrals and training
family caregivers may require. They call for a national education and compensation
reform to enhance physician services to family caregivers.
In its strategic plan, the NCI (2003) suggests that the quality of cancer com-
munications need to be enhanced, including gaining a better understanding of the
information needs of patients, families, and other decision makers involved in the
choice of cancer interventions. Equally important, research is needed that investigates
the relationship between the time that professional caregivers provide information
and improved patient outcomes (Given et al. 2001). Last, economic seminars need
to be sponsored to assist family caregivers with the financial realities of the cost of
cancer care.
Public Policy
Given existing trends, it is likely that the cost of treating cancer will continue to
escalate. Increasing costs are attributable to the aging of large numbers of our na-
tion’s citizens, improved cancer survivorship, better early detection strategies, and
enhanced treatment modalities (Eisenberg 1979; Harper 2000). Increasingly large
numbers of people are achieving old age, thus expanding the population of persons
susceptible to develop cancer (Harper 2000). If true estimates of cancer care for the
family caregiver are to be determined, then public policy that addresses both indirect
and directs costs must continually be assessed. Specifically, those polices related to
unpaid family care, paid home care, and out-of-pocket costs associated with skilled
nursing facility placement need to be continually monitored (Hayman et al. 2001).
Navaie-Waliser et al. (2002) assert that family caregivers and their advocates have
generated “a new awareness of the challenges of caregiving in the current healthcare
system” (p. 411). In their study, they found that vulnerable caregivers, those 65
and over, were more likely than nonvulnerable caregivers to be providing care to
their loved one with cancer. Yet, they were providing this assistance without paid
compensation. Navaie-Waliser et al. suggest that pressures on unpaid caregivers are
likely to increase, with Medicare “as a dependable supplement to family caregiving”
dramatically reduced (p. 411). They call for the development of a broader array
244 D. Baldwin
of accessible, affordable, and innovative services and programs to support family

caregivers. Guidry et al. (1998) call for insurance programs to be broadened and
include diagnostic procedures and treatments which help prevent recurrence and
ease survivor anxiety and pain. Insurance programs should also eliminate the barriers
imposed by those who lack means to pay for adequate health insurance coverage,
including groups such as minorities, the elderly, and the poor.
According to Lukemeyer et al. (2000), family-friendly workplace policies are
now being advocated by family caregivers and other consumers. They suggest that
employers are beginning to respond to the costs of cancer care being shifted from
the public to the private sector by helping employees meet paid work and caregiving
demands. Yet, the extent to which these policies offset the cost to employers of
higher absenteeism and turnover rates need to be researched. Workplace policies
that help employed caregivers meet work and family demands while reducing the
family caregiver’s cancer care burden are beneficial to employers (Lukemeyer et al.
2000).
Promotion of increased access to cancer clinical trials is another area where policy
changes are needed. According to the FDA (2009), one of the most common methods
to gain access to unapproved drugs in the use of cancer care is to enroll into a clinical
trial. However, studies have shown that most insurance plans do not cover the cost
of participation in clinical trials (Fleck 1993). Fireman et al. (2000), in their study
on the cost of care for patients in clinical trials, found that “participation in cancer
clinical trials at a large HMO did not result in substantial increases in the direct costs
of medical care” (p. 136). More studies exploring the cost of participation in clinical
trials need to be conducted.
Another policy issue relates to insurance coverage. According to Guidry et al.
(1998), insurance coverage is of utmost importance to ensure access to needed med-
ical services. However, some employers are no longer providing complete insurance
coverage for their employees due to the rising cost of private insurance premiums.
Consequently, for cancer caregivers, a loss in coverage could increase their financial
burden. Moreover, individuals with low or no income depend on the public insurance
plan of Medicaid to provide access to health care. With recent cuts in Medicaid at the
national and state levels, patients and family caregivers may experience increased
out-of-pocket expenses associated with cancer care. Advocates are encouraged to
petition policy makers and stakeholders to support Medicaid funding for the poor
and indigent at its existing rates. Other policy areas that need to be explored include
psychological stress and distress, and shortened survival as a result of caring for a
loved one with cancer.
Summary
Mounting evidence on the escalating cancer costs associated with family caregiving
is emerging. While most research has been conducted on direct medical care costs,
significant gains in examining indirect costs have been made. Current research on
family caregiving confirms the significant financial burden that cancer care places on
both the family and society. A more comprehensive view of the costs of cancer care
is needed—one that focuses on the financial impact of cancer care on the family as
well as the patient with cancer, and goes beyond medical treatment, screening, and
prevention.
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Chapter 13
Legal Issues in Cancer Caregiving
Marilyn Frank-Stromborg and Kenneth R. Burns
The importance of looking at the legal issues of being a caregiver of a cancer patient
is underscored by the number of people diagnosed with cancer and the number of
individuals who serve as caregivers. A total of 1,399,790 new cancer cases and
564,830 deaths from cancer are expected in the United States in 2006 (Jemal et al.
2006).
Cancer patients used to spend long periods of time in the hospital, but they are much less
likely to do so now. So, that person and whoever is the significant caregiver are often called
upon to manage complex treatment, understand what is going on in terms of side effects, and
incorporate this diagnosis and treatment into their everyday lives. (Caregiving Challenges
2006, p. 1)
There are 52 million informal or family caregivers who provide care to someone aged
20 years or older who is ill or disabled (Family Caregiver Alliance 2005), and 8%
report providing care to someone with cancer (Northouse 2005).
Current Status of Legal Issues in Caregiving
One of the first legal issues encountered in any discussion of family caregivers is
whether or not a legally enforceable obligation exists to provide caregiving assistance
to the individual. A nonfamily member would have no obligation to provide care
unless they agreed to be a caregiver. This is especially true when active family
involvement is essential to the implementation of the individual’s desired care plan,
for instance, when the individual prefers to remain in her/his own home rather than
entering a nursing home. While it might be argued that there is a moral duty to
care for one’s family, no law compels family members to personally provide direct,
M. Frank-Stromborg ()
DeKalb County Courthouse, 133 West State Street, Sycamore, IL 60178, USA
K. R. Burns
Division of Nursing, Martin Methodist College, 433 West Madison Street, Pulaski, TN 38478, USA

250 M. Frank-Stromborg and K. R. Burns
hands-on care to dependent relatives (Kapp 2003). The same is true for the situation
in which a family insists on participating in the caregiving for an ill relative who
objects to such care. “Families have neither a duty nor a right to be involved, as
long as the individual who objects to the family providing direct services to them
is capable of making and expressing their own autonomous decision” (Kapp 2003,
p. 50). However, once a family member enters into the role of caregiver, every state
has a statute that makes it illegal for the caregiver to willfully ignore the basic needs
of, or otherwise through acts or omissions, endanger the dependent person. The basis
of these statues resides in elder abuse. In the overwhelming majority of states, when
health and human-service professionals suspect cases of abuse or neglect, they have a
legal obligation to report their suspicions to local Adult Protective Services agencies
(Kapp 1995). In the remaining states, health and human-service professionals have
immunity against any liability if it is a good faith report.
Kapp (2003) addresses the issue of whether or not the caregiver needs a profes-
sional license to take care of the family member. If there is a willing family member,
it is commonplace for home health agencies, hospital, and nursing facility discharge
planners to train the willing family member in how to care for the cancer patient (e.g.,
change dressings, suction tubes, administer medications). While no state empowers
family caregivers to administer medications and other medical treatments, no state
expressly prohibits their administering medications and treatments when caring for a
family member. The reality is that throughout this country, caregivers are delivering
every conceivable type of physical care to family members hundreds of times a day
without any reported criminal prosecutions for practicing nursing without a license
(Kapp 2003).
While there is not a duty to provide physical care for a parent, there are family
or filial responsibility statutes in 26 states. These statutes impose a duty on adult
children, if they are able, to provide financial assistance to indigent parents (Jacob-
son 1995; Lee 1995). For example, in the Americana Healthcare Center v. Randall
(1995), the South Dakota Supreme Court held that an adult child with financial ability
is liable for the support of an indigent parent. The court also upheld the constitution-
ality of a statute requiring such support (Jacobson 1995). Filial responsibility laws
are rarely enforced, and when they are, the enforcement has sometimes led to the
law’s repeal (Lee 1995).
The statute in Illinois defining a caregiver is typical of that found throughout
the country in state statutes on this subject. The applicable statute in Illinois (IL St
Ch 320 § 65/15, 1993) defines a caregiver as an adult family member, or another
individual, who is an informal provider (not compensated for the care he or she
provides) of in-home and community care to an older individual, or a grandparent
or older individual who is a relative caregiver.
In general, the following facts are known about caregivers: (a) More than one-
third of caregivers spend a minimum of 40 hours per week providing care to the
family member; (b) Almost half (44%) of caregivers are male (Did you know? 2005);
(c) The majority of caregivers are middle-aged (35–64 years old; Family Caregiver
Alliance 2005); and (d) Most caregivers are employed (Bond et al. 1998). Research
has documented that psychological health appears to be the aspect of the family
13 Legal Issues in Cancer Caregiving 251
caregiver’s life that is most affected by providing care, with depression the most
common mental health alteration (Given et al. 2004; Schulz et al. 1995).
Research has documented the differences in caregivers of patients with cancer.
Comparison between caregivers providing care for patients with cancer versus those
without cancer showed that “a greater percentage of cancer caregivers reported taking
time off from work, having less time to socialize with family and friends, and wanting
help managing stress than non-cancer caregivers” (Northouse 2005, p. 2). Cancer
caregivers also are more likely to provide care in situations with higher levels of
burden. In one study, more than half of cancer caregivers (56%) provide care at the
two highest levels of burden in contrast to less than one-third of noncancer caregivers
(31%; Northouse 2005).
Caregiving of cancer patients presents considerable challenges: physical, emo-
tional, economic, and legal. The nature and extent of home care have changed
markedly over the past decade. Technological advancements permit sophisticated
services that previously were limited to use within health care institutions, however,
can be rendered today with the usually preferred location of the patient’s own home.
Virtually every diagnostic and treatment modality that can be made portable can be
provided in the home (Kapp 1995). Because of the multiple issues and challenges
(e.g., physical, emotional, economic, and legal) involved with caregiving for cancer
patients, the legal issues encountered by caregivers can seem confusing and compli-
cated. This is especially true if the care recipient is impaired or facing end-of-life
issues. Four major legal issues faced by caregivers include: (1) caregiver employ-
ment issues, (2) care recipient health insurance, (3) legal issues encountered by the
caregiver when planning for the incapacity of the care recipient, and (4) legal issues
surrounding advance directives.
Employment
Caregiving itself can have financial consequences for the caregiver. One study found
that caregivers lose an average US$ 659,130 over their lifetimes as result of reductions
in their salaries and retirement benefits (National Alliance for Caregiving 2005). Six
in ten employed caregivers reported that caregiving forced them to make changes
at work, such as going in late, leaving early, taking time off, or leaving their jobs
altogether (National Alliance for Caregiving 2005).
Caregivers need to be made aware of the 1993 Federal Family and Medical Leave
Act (FMLA; 29 U.S.C. 2654). The FMLA entitles most workers to unpaid leaves of
absence for up to 3 months to care for a family member. Unfortunately, because it
is an unpaid leave, more than three in four employees need but do not take family
and medical leave because they cannot afford the loss of income (National Center
on Women & Aging at Brandeis University & the National Alliance for Caregiving
1999). Caregivers are entitled to take a total of 12 weeks of unpaid leave during any
12-month period to provide care to an immediate family member (spouse, child, or
parent) with a serious health condition, including cancer. To be eligible for FMLA,
the employee must have been employed for at least 12 months, worked at least
1,250 hours during the 12 months immediately preceding the requested leave, and
either works in the home office of the employer or at a satellite office that has 50
or more employees and is located within 75 miles of the home office (Gelak 2005).
Caregivers have the right to return to their job or an equivalent job. An equivalent
job is defined as one with the same pay, benefits, and responsibilities (National
Partnership for Women & Families 2005). More than 35 million Americans have
taken leave under this law since it was passed in 1993 (U.S. Department of Labor
2000). The problem with a nonpaid leave from work is that some cancer diagnoses
span a lengthy period of time of alternating remissions and physical crises as well
as coexist with diseases which require the caregiver to have multiple employment
absences.
Depending on where the caregivers live, they could be afforded more help under
state laws. Only one state, California, has created a comprehensive paid family and
medical leave insurance program in the nation. Through the California paid family
leave insurance program most employees, over 13 million, can receive 55–60% of
their salary up to a cap of US$ 728 per week for up to 6 weeks of leave per year to
care for a seriously ill family member or a new baby (Bell and Newman 2003). The
program is funded by the employees themselves, at an estimated cost of US$ 27 per
worker per year. While California has an explicit paid family leave law, other states
have enacted provisions that provide at least some assistance to working caregivers.
There are at least 26 states that have regulations or laws that permit caregivers,
if they are public employees, to use their sick leave to provide care for certain sick
family members. These states include: Arizona, California, Colorado, Connecticut,
Florida, Hawaii, Idaho, Indiana, Iowa, Kansas, Kentucky, Maryland, Minnesota,
Montana, Nebraska, Nevada, New Hampshire, North Carolina, North Dakota, Ok-
lahoma, South Carolina, South Dakota, Tennessee, Texas, Utah, and Washington. In
five states, private employers are required to allow caregivers to use their sick leave to
care for certain sick family members. These states include: California, Connecticut,
Hawaii, Minnesota, and Washington (Bell and Newman 2003).
In addition to federal and state laws, caregivers have other avenues to explore
that may help provide paid time off, partial paid time off, or a guarantee that their
job or an equivalent will be available when they return to work. Caregivers need
to investigate their employer’s company policies, know their state’s laws pertaining
to caregiving leaves and schedule a meeting with their employer’s human resource
representative to request an extended leave.
Considering the success of the FMLA, it is recommended that the federal gov-
ernment takes steps to make FMLA a more viable option for families who cannot
afford to take the leave as it currently stands. Enacting a federal paid family leave
bill is not a politically viable option at this time with a nation coping with a war, the
aftermath of Hurricane Katrina, and a growing budget deficit. The climate simply
does not support a broad federal initiative; rather it is recommended that incremental
steps be taken, such as: (1) commissioning a Department of Labor report on the cost
implications of various workplace-friendly programs, including California’s paid
family leave bill and (2) creating a tax credit for companies which voluntarily pro-
vide some measure of paid family leave, or create greater flexibility in the workplace
for employee caregivers (Bell and Newman 2003).
With a significantly increasing aged population, the need to develop a more viable
option for families who cannot afford to take a nonpaid leave of absence from work
is becoming more urgent. Managed care and state and federal health benefits have
shortened hospital stays. Shortened stays have resulted in more families spending a
greater amount of time providing intensive, ongoing care to a family member with
cancer. Unfortunately, the pool of family caregivers will dwindle in the coming years.
By 2050, the ratio of caregivers to each person needing care will be 4 to 1 compared to
11 to 1 in 1990 (Institute for Health and Aging as cited in National Family Caregivers
Association 2003).
The time required and the amount of care the family member needs may be so
significant that the person providing the care and services must take considerable
time off work or find it necessary to stop working. The time frame for such exten-
sive care may last from a few weeks to several years (Warren et al. 2004). Based
on the negative financial impact on family caregivers, arguments have been put
forth regarding the need to pay caregivers as one method of addressing the issue of
nonpaid leaves of absence. However, the practice of paying relatives as caregivers
remains controversial. A research study conducted in Arkansas found that family
members who hired family versus nonfamily workers received more service and had
equal or superior satisfaction and health outcomes as compared to those who hired
nonrelatives (Simon-Rusinowitz et al. 2005). Several countries do have policies for
caregiver payment. Australia, Norway, Sweden, and the United Kingdom are exam-
ples of countries that offer a care wage to caregivers of severely disabled and elderly
persons (White and Keefe 2005).
Reimbursement for Caregiver Services
If a family caregiver is not paid while he or she is delivering care, can they recover
payment from the estate once the sick family member dies? Unfortunately, after
the death of the family member, it is common for such a care provider to face
obstacles when attempting to recover from the estate. Other relatives may refuse
to allow compensation, and the care provider may be forced to litigate his or her
claim against the estate. “Many states have an evidentiary rebuttable presumption
that services rendered to a family member are gratuitous in nature, so the caregiver
cannot recover. However, in states with such a presumption, these are not always
hard and fast rules” (Simon-Rusinowitz et al. 2005, p. 96). It should be noted that
the presumption of gratuity is applied only in the absence of a contract between the
parties, which can be either an express contract, a written contract between the two
parties, or an implied contract made through statements or impressions imparted by
the care recipient to the caregiver that he or she will be rewarded from the estate
for their caregiving services. The courts will take into account multiple factors in
deciding whether to award payment for caregiving services upon the death of the
family member. Evidence provided by the caregiver for payment must demonstrate
that the expectation of payment was reasonable, given the extraordinary nature of
the services provided and the nature of the relationship of the parties.
Health Insurance and Disability Benefits
Nearly one in every four Americans is enrolled in Medicare or Medicaid. These

programs provide health care for the aged, disabled, and indigent populations and
are administered by the Centers for Medicare and Medicaid Services (CMS; formerly
HCFA, the Health Care Financing Administration). Medicare is the federal health
insurance program for people aged 65 or older. It also covers certain younger people
with disabilities and people with End-Stage Renal Disease. Medicaid is a joint federal
and state program that helps with medical costs for some people with limited income
and resources. Coverage varies from state to state, and a person may be covered by
both Medicaid and Medicare.
Medicare covers hospitalization, skilled nursing, home health and hospice care,
however, requires certain deductibles, premiums and copayments. For patients re-
ceiving outpatient care, Medicare will cover 80% of allowable outpatient medical
services after a US$ 100 deductible. The patient is responsible for 20% of the charge,
regardless of the cost. If the health care provider or supplier accepts “assignment” the
patient does not have to pay anything since “assignment” is an agreement between
Medicare and the health care providers to accept the Medicare-approved amount as
payment in full. On January 1, 2006, Medicare began offering a new program of
prescription drug coverage. This new coverage can provide help with drug costs,
no matter how the person pays for drugs today, and everyone with Medicare can
join a drug plan to get this coverage. The Medicare prescription drug coverage is
insurance, in that insurance companies and other private companies approved by
Medicare provide the coverage. The patient chooses a drug plan and pays a monthly
premium (Medicare Basics 2005). To date, significant problems with this program
have been reported in the very low-income Medicare beneficiaries who also qualify
for Medicaid.
Out of approximately 7.2 million low-income seniors who are eligible for the
low-income subsidies that were designed to help make medicines affordable, only
about 1.7 million, or 24%, are actually receiving those subsidies. The poorest
of the poor—those very low-income Medicare beneficiaries who also qualify for
Medicaid—have worse drug coverage today than they had before the new Medicare
Part D program began in January. These so-called “dual eligibles,” approximately
6.3 million needy seniors, had good drug coverage through Medicaid before Part D
began. This group now has drug coverage through private Medicare plans that, in
several respects, is not as good as the Medicaid coverage they used to have (Steinberg
2006).
Medicare also offers home health care benefits if the patient meets four conditions:
(1) the attending physician must identify and prescribe the need for in-home medical
care; (2) the patient must need intermittent skilled nursing care, physical therapy,
speech or occupational therapy; (3) the patient must be homebound; and (4) the
home health agency providing care must be approved by the Medicare Program.
The skilled nursing care must be at a level requiring a registered nurse or licensed
practical nurse to provide the essential care. Medicare does not pay for full-time
personal care, 24-hour/day care at home, and homemaker services such as shopping
and cleaning. In addition, home meal delivery is not covered.
There are multiple issues associated with Medicare, including problems with ac-
cessing the health care system and physician specialists (Trude and Ginsburg 2002).
In one community survey, the percentage of Medicare seniors reporting delays in or
not receiving needed care rose from 9.1% in 1997 to 11.0% in 2001. In addition,
Medicare seniors and older privately insured people are also waiting longer for ap-
pointments with their physicians. By 2001, more than a third of Medicare seniors
waited more than 3 weeks for a checkup and a similar percentage waited a week
or more for an appointment for a specific illness (Trude and Ginsburg 2002). At the
same time, the proportion of physicians accepting all new Medicare patients fell from
74.6% in 1997 to 71.1% in 2001. These health care access problems are the result
of the changes in Medicare payments for specialist physicians made in the Balanced
Budget Act of 1997.
In general, Medicare needs to be revised to reflect the fact that people no longer
die within a few years after reaching the age of 62 or 65. Increasingly, life expectancy
may be to the mid-1980s. There are several major problems with Medicare, includ-
ing inadequate program funding, program rigidity, and the impact it has had on
accessibility to health care for the elderly. In addition, the current Medicare system
attempts to place all seniors into a centrally planned system. As the senior population
becomes more diverse and medical care changes and advances, the more outdated
and unfair this system becomes to seniors (Beckner 2003). The financial stability of
Medicare is another significant issue. As the baby boom population begins to reach
Medicare-eligible age in 2010, the costs to both Part A and Part B will begin to sky-
rocket and force Congress to attempt to impose cost controls on a system already
beginning to deliver inadequate care to a diverse senior population (Beckner 2003).
The Trustees of the Federal Hospital Insurance (HI) and the Supplementary Medi-
cal Insurance Trust Funds (SMI) report annually to Congress on these trust funds’
short- and long-term financial health. The 2005 report estimates that Medicare will
remain solvent until 2020. Policy reforms that enable Medicare to continue, albeit
with different rules on eligibility and coverage, are urgently required.
Caregivers frequently want to know how the care recipient may qualify for
Medicaid coverage for nursing home services or home- and community-based long-
term-care services. Medicaid is embodied in 42 U.S.C. § 1396 et seq. (http://www.
law.cornell.edu/uscode/42/ch7schXIX.html). Medicaid was first enacted in 1965 as
an amendment to the Social SecurityAct of 1935. Medicaid pays health care providers
for rendering specified health-related services to specified groups of people who sat-
isfy a financial means test. If seniors and disabled people have incomes and assets
low enough to qualify them for the federal Supplemental Security Income (SSI) cash
assistance program, they most likely qualify for Medicaid benefits (Kapp 2003).
Many states allow people to become eligible under a “medically needy” category if
they “spend down” their income and assets on care. Since its inception, the program
has been plagued by fraud from both health care providers and patients. To curb
these abuses, Congress passed a law in 1996 making persons criminally liable for
committing fraud in order to become eligible for medical assistance.
When the Health Insurance Portability and Accountability Act (HIPAA) of 1996
(Public Law No. 104–191), came into effect, it exposed to criminal punishment for
fraud and abuse anyone who “knowingly and willfully disposes of assets (including
by any transfer in trust) in order for an individual to become eligible for medical
assistance under Medicaid, if disposing of the assets results in the imposition of
a period of ineligibility for such assistance.” President Bush signed a law making
it more difficult to give away assets and then qualify for nursing home care under
Medicaid. Previously, if applicants transferred assets within 3 years of applying for
Medicaid long-term care, they faced a delay in becoming eligible. The new law
lengthens the period for most asset transfers to 5 years. It also states you may not
qualify for Medicaid if you have home equity of more than US$ 500,000. These
measures were instituted because Medicaid is a very costly program. In addition,
the goal of the new legislation is cost containment as well as preserving the original
purpose of Medicaid to help the truly needy or poor (Miller 2006). These recent laws
have significant implications for caregivers, especially in terms of caregiver burden,
as they may result in the patient not being able to qualify for Medicaid nursing home
services, home- and community-based long-term-care services. All of these services
are frequently needed when people have a cancer diagnosis. Another change of which
caregivers should be aware concerns the requirement that care recipients provide sat-
isfactory documentary evidence of citizenship or nationality when initially applying
for Medicaid or upon a recipient’s first Medicaid redetermination. The requirement
to provide proof of citizenship to be eligible for Medicaid was instituted on July 1,
2006 (Public Law No. 109–171, Deficit Reduction Act of 2005, Section 6036; CMS
2006).
While many laws may have a daunting impact on recipients as well as caregivers,
several recent laws promise to increase funding for support services for family care-
givers and for stimulating state innovations in long-term care. The key development is
the enactment of the National Family Caregiver Support Program (NFCSP) in 2000,
an amendment of the Older Americans Act (OAA; Fox-Grage et al. 2001). This bill
was codified as Title III-E of the OAA. The NFCSP signifies national recognition
of and commitment to providing direct support services to caregivers. It is the first
major nationwide program initiative under the Older Americans Act since the 1970s.
Under broad federal guidelines, the NFCSP calls for states, working in partnership
with area agencies on aging and local service providers, to develop multifaceted
systems of support for family and informal caregivers within five basic categories
by offering: (1) information to caregivers about available services; (2) assistance
to caregivers in gaining access to available services; (3) individual counseling and
training to help caregivers in making decisions; (4) respite care to temporarily re-
lieve caregivers; and 5) supplemental services, on a limited basis, to complement
the care given by caregivers (Feinberg et al. 2004). The importance of the support
offered by the NFCSP is underscored by the research on the cost of caregiving for
the terminally ill by Aoun et al. (2005). Aoun et al. report that caregivers providing
support to individuals receiving palliative care identified unmet needs for informa-
tion, communication, service provision, and support from health and community
services.
Under the NFCSP, states use federal funds to offer direct support services to family
caregivers of persons aged 60 and older. All income groups are eligible for services.
However, states must give priority to those providing care to older individuals in the
greatest social or economic need with particular attention to low-income individuals
(Feinberg et al. 2004). While the NFCSP is emerging both as a key program to
enhance the scope of services available to caregivers and as fuel for innovation in
this area, it is inadequately funded. The level of funding to states in 2003 was US$
138.7 million, which left gaps in caregiver support services and varied substantially
from state to state.
Feinberg et al. (2004) conducted a 50-state study on caregiver support with the
passage of NFCSP. They made five recommendations for achieving a better caregiver
support system across the United States. The five recommendations include: (1) raise
the funding level of NFCSP to reduce gaps in caregiver support; (2) improve data
collection and reporting under the NFCSP; (3) conduct a national public awareness
campaign on family caregiving; (4) invest in innovation and promising practices; and
(5) strengthen and expand uniform assessment of caregiver needs in all Medicaid
home- and community-based services programs that provide some component of
caregiver support.
Planning for Incapacity
Caregivers should begin making legal preparations when the family member has been
diagnosed with cancer. Cancer creates strain on the family’s physical, psychological,
and financial resources. People with cancer may have the capacity to manage their
own legal and financial affairs when diagnosed, however, as the disease advances,
they will need to rely on others to act in their best interests. The transition may
occur rapidly or gradually over a long period of time. However, no matter how rapid
or prolonged, this transition is never easy. Advance planning allows people with a
long-term disease and their families to make decisions together for future events.
The legal issues that must be considered when a person is (or may become)
incapacitated include: (a) management of the person’s financial affairs during his
lifetime; (b) the management of the person’s personal care such as medical decisions,
residence, and placement in a nursing facility; (c) arranging for payment of long-term
health care; (d) preserving the family assets; and (e) the distribution of the person’s
assets on his or her death.
Financial and Health Care Management Issues
Health care information is considered confidential, and there has always been reluc-
tance on the part of health care providers to share private information with family
unless directed to do so by the patient. Complicating confidentiality issues is the set of
federal regulations (45 Code of Federal Regulations Parts 160 and 164) that became
effective on April 14, 2003, to implement the medical privacy provisions of Health
Insurance Portability and Accountability Act (HIPAA). These health care privacy
laws require written documentation that the health care provider is authorized to dis-
cuss a family member’s care with the caregiver. These regulations impose significant
restrictions and documentation requirements on health care providers, among others,
regarding the release of identifiable medical information to persons other than the
patient. Therefore, it is essential that as soon as possible after a diagnosis of cancer
is confirmed that the caregiver secures the necessary paperwork to have access to
health care information about their family member (Kapp 2003).
How can a family make financial/legal decisions on behalf of the cancer patient?
A Durable Power of Attorney (DPA) for Property is a document that allows the
cancer patient to give authority to another person to make financial/legal decisions
and financial transactions on their behalf. It is called “durable” when, by its terms,
it remains effective even if the principle becomes mentally incompetent (Sabatino
2001). The powers given to the attorney-in-fact can be as limited or as broad as the
patient wants, and can include the power to buy property, to invest, to contract, to
engage in tax planning, to make gifts, and to plan for government benefits such as
Supplemental Security Income. A DPA usually becomes effective as of the day it is
signed and executed. However, a “springing” DPA becomes effective at a later date
when the patient becomes mentally incompetent. It “springs” into effect at the point
the patient is certified by a physician as having lost capacity.
If decisions have not been made regarding durable or springing power of attorney
prior to the cancer patient becoming incapacitated, the Court can appoint an indi-
vidual or professional to act on the care recipient’s behalf. The terms used for these
protective proceedings vary by state, however, in general are called: (a) a “guardian-
ship” in which control is given over the incapacitated person’s financial affairs and
(b) a “conservatorship” to describe a proceeding giving control over the person’s
personal affairs (Prensky 2004). Family members and interested parties may petition
the court to become either a guardian or conservator.
Most states have three documents that help ensure that even if patients cannot
speak for themselves, they will get only the care they desire when gravely ill. These
documents are a living will, a Durable Power of Attorney for Health Care (DPAHC),
and a do-not-resuscitate order. The first two are legal documents that are administered
according to a state’s laws; the third is a medical directive, like a prescription order,
that is filed with the patient’s medical chart (AARP 2006). The DPAHC is an advance
directive that allows the patient to appoint a health care “agent” or “proxy” to make
health care decisions in the event that they can no longer speak for themselves. Every
state recognizes a DPAHC, however, laws governing directives vary from state to
state. While state laws may vary, the powers the patient gives to the caregiver usually
include: (a) the right to select or discharge care providers and institutions; (b) the
right to refuse or consent to treatment; (c) the right to access medical records; (d) the
right to withdraw or withhold life-sustaining treatment; and (e) the power to make
anatomical gifts (Sabatino 2001). A DPAHC is executed when it is signed by the
patient, witness, or notary public verifying that the patient is competent and acting
under his or her own volition.
Though the name of living wills varies by state, this document, also known as a
declaration, instruction directive, or wishes for terminal illness, outlines the type of
treatment the patient would or would not like in the event that they have been given
a terminal diagnosis or are in a terminally unconscious state (Villet-Lagomarsino
2000). Most living wills direct that only “life-sustaining” or “life-prolonging” treat-
ments should be withdrawn. These are generally defined as treatments used to
artificially prolong the dying process but which will not ultimately prevent someone
from dying. Most states accept the validity of living wills, and some states impose
penalties on health care providers who do not comply with the patient’s instructions.
Some states have living will statutes that provide protections for life insurance ben-
efits that might otherwise be jeopardized. The patient’s rights to advance medical
directives are protected by the Federal Patient Self-Determination Act. This federal
law requires all health care agencies and managed care plans to give their patients
covered by Medicare or Medicaid information about advanced directives. Before the
document can become active, though, most states require that two doctors record a
terminal diagnosis on the individual’s medical records.
Since end-stage cancer patients will generally not benefit from cardiopulmonary
resuscitation (CPR), it is not unusual for the patient to fill out a Do-Not-Resuscitate
Order (DNR). The DNR is placed directly into the patient’s medical file or chart so
that medical staff will be on notice not to attempt CPR. The DNR should be filed with
every physician and care institution that the patient will use, as it is not transferable
between institutions.
There are special issues that arise when the caregiver is in a lesbian, gay, bisexual,
or transgender (LGBT) committed relationship, typically referred to as same-sex
relationships or domestic partnerships. Without legal protections in place, these
relationships might not be legally recognized and could be questioned or contested
by a biological family member. When the LGBT caregiver and care recipient first
learn of the cancer diagnosis, there should be discussion of the possible financial and
legal decisions that need to be made in the event of incapacity, and the couple should
investigate local and state laws related to LGBT relationships. Currently, some states
have laws granting legal rights to same-sex couples and define these relationships as
marriages, civil unions, domestic partnerships, or reciprocal beneficiaries (Wenzel
2005). These states are California, Connecticut, Hawaii, Maine, Massachusetts,
New Jersey, Vermont, and Washington (Human Rights Campaign 2006). California’s
Domestic Partnership Law (AB205) went into effect on January 1, 2005 but does not
affect federal benefits (such as Social Security survival benefits), because the federal
government currently does not recognize domestic partnerships (Wenzel 2005).
When cancer has been diagnosed in one of the partners, the LGBT caregiver should
do estate planning either with a Will or a Living Trust, a Durable Power of Attorney
for Finances and Property and for Health Care. The LGBT persons receiving and
giving care may also want to consider a Revocable Trust, which provides for an
orderly distribution to beneficiaries of a person’s assets upon death. A trust also has
incapacity language in it, which may become effective before death. The Durable
Power of Attorney for Property/Finances and the Durable Power of Attorney for
Health Care functions for LGBT persons in the same manner it does for other people.
The Durable Power of Attorney for Health Care is known in California as an Advance
Health Care Directive and ensures that all health care needs and desires of the LGBT
person are carried out and monitored by a trusted person when the principal can no
longer make or communicate health care decisions.
Proactive Planning by Care Recipients and Care Providers
Caregivers form the foundation of ever-expanding home-based long-term care for

individuals experiencing altering life illnesses or disabilities that interfere with their
ability to perform activities of daily living. Both caregivers and care recipients need to
collaboratively work through multiple issues to ensure a satisfying experience. While
potential filial caregivers may feel obligated to provide care to a family member, it
is important to first consider the financial impact of accepting such responsibility as
the level of care may require the arrangement of unpaid leaves of absences. Another
consideration is to determine the ramifications that an unpaid leave or cessation of
work to provide full-time care will have on maintaining personal health insurance.
While it may be difficult, discussions concerning reimbursement and reaching a
form of agreement for caregiver services can avoid costly legal expenses as well as
long-term family disagreements and dissention.
Caregivers of cancer patients need to be aware of the stress associated with care-
giving, potential social isolation, time commitment, potential for alterations in their
own physical and emotional health, and the high level of burden that is associ-
ated with the role of caregiver. Therefore, it is important to be proactive to insure
“time-off” from caregiving responsibilities, as well as time to take care of personal
needs such as clinic visits, financial/banking, and other family responsibilities. Such
arrangements can be made during discussions with family members, through ex-
ploring what is available through state and federal programs, by examining the care
recipient’s health, disability, and long-term care insurance policies for respite care,
as well as seeking assistance in caring for the individual.
To assure that the plan of care is followed and both the care recipient and care-
giver have a satisfying experience, care recipients should ensure that the caregiver
has access to his or her health care information. The caregiver should be enabled
to discuss the treatment plan with the physician or other health care staff members
to guarantee an understanding and accurate implementation of the plan. The care
recipient needs to sign the appropriate release forms for all clinics, outpatient ser-
vices, and hospitals. These forms should be placed in the patient’s chart within each
service delivery agency. Care recipients should establish with their caregivers that
access to this information obligates them to maintain confidentiality unless expressly
granted permission to disclose. Early on, it is beneficial for care recipients to plan for
incapacity by establishing Durable Power of Attorney for Health Care (DPAHC), Fi-
nances and Property (DPAFP), and a Living Will, as well as their decision regarding
resuscitation. Not all familial caregivers are named as holding DPA. Early identifi-
cation of the individual or individuals holding the DPA provides the caregiver with
the necessary information to assure that the care recipient’s instructions and desires
are fulfilled, assets are protected, and the financial obligations are discharged.
While the role of caregiver may seem overwhelming, federal and state statutes
and regulations are changing to alleviate this based on: (a) the increasing number
of individuals desiring to remain in the comfort of their homes versus admission
to long-term care facilities; (b) shortened hospital stays; and (c) the recognition
of the challenges and burdens experienced by caregivers, as well as the lack of
information and services available to them. In addition, as ongoing research continues
to demonstrate the positive outcomes of homecare and the challenges, barriers and
economic burdens experienced in attempting to fulfill the role of caregiver, more
attention will be given to changing laws at the federal and state levels to lessen
family economic burdens and to assure ready access to information and resources
essential to this role.
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Chapter 14
Cancer Caregiving: Policy and Advocacy
Dale L. Kaufman, Ann O’Mara and Christine M. Schrauf
In almost every way, cancer care in the United States today reflects brilliant advances
in research, education, and training. Patients receive sophisticated treatments that
have become so routine family members can provide them at home. When they
want to be involved in treatment decisions, these same patients and families can
turn to the Internet and learn about clinical trials and recommendations from the
best medical facilities throughout the world. As patients receive chemotherapy and
other treatments at home, medical professionals are turning over care to families and
other nonprofessional caregivers. However, while cancer diagnosis and treatment
explode with promise for the future, policies that support families providing care lag
far behind.
A step back in time provides important insight on what it will take for poli-
cies to change. At the turn of the twentieth century, for instance, cancer inevitably
was a death sentence. Scientific and technical discoveries changed that automatic
prognosis—however, something else allowed our health system to progress, at each
step of the way. And, that was shared outrage by the American community of health
professionals and consumers, men and women, young and old, at the unfair fate of
people with cancer and the need to launch a “war on cancer.” At each step of the
way, outrage at this fate led to a commitment on the part of political leaders and the
health system to change the future of people with cancer.
D. L. Kaufman ()
U.S. Department of Veteran’s Administration, Washington, DC, USA
U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services,
200 Independence Avenue S.W., 309D-02, Washington, DC 20201, USA
A. O’Mara
Center for Medical Health Services/SAMHSA, Rockville, MD, USA
DHHS/NIH/NCI/DCP, MS-7340, Rockville, MD 20892, USA
C. M. Schrauf
Division of Nursing, Elms College, 291 Springfield St. BH 431, Chicopee, MA 01030, USA

266 D. L. Kaufman et al.
It will take similar outrage to find a solution to the unfairness that exists today for
the families and other nonprofessional caregivers who care for loved ones with cancer.
It will take determined advocacy, strong policies, and the unyielding conviction that
society must address the needs of caregivers along with those of the patients.
The statistics reveal that a movement to support the needs of caregivers for persons
with cancer has never been more important. If current cancer incidence rates were
applied to U.S. Census Bureau projections for the next five decades, due to population
growth and aging the number of cancer patients is expected to double from 1.3 to
2.6 million between 2000 and 2050. In addition, the number and proportion of older
persons with cancer are expected to increase dramatically. In the next 30 years, the
absolute number of cancers in persons 65 years and older is expected to double
(Edwards et al. 2002).
And, there are other changes that have implications for people with cancer and their
caregivers—from dependence on two incomes to sending patients home from the
hospital more quickly, and from smaller family size to greater geographic mobility,
limiting family availability. As the need grows while the pool of potential caregivers
shrinks, we must ask, “How will we fill the need for care?” Families and community
groups simply would not be able to fill all the needs without the support of good state
and national policies.
Current Issues
The challenges of caring for the elderly, especially those suffering from cognitive
impairment such as Alzheimer’s disease, have propelled caregiving to a subject
of national attention. Former and current caregivers for elderly family members
have been leaders in forming advocacy groups and working toward measures such
as respite care. However, although caregivers for cancer patients have benefited
from the groundbreaking activism of caregivers for aging family members, cancer
brings different caregiving issues. Alzheimer’s and other diseases of aging are usually
chronic and long-term illnesses, while cancer often is an acute illness that often brings
with it an avalanche of crises. For all caregivers there may be a change in family roles,
however, cancer can telescope the experience. Suddenly, a wife is taking physical care
of her husband, while independence, emotional and physical, is thrust prematurely
on their children. And, caregiver needs do not end when the patient is in remission
or dies. Issues, from survivorship to bereavement, not only stress families—they can
rewrite their future. Like most illnesses that involve expensive treatments, which may
or may not be covered by insurance, cancer can impoverish a family. The quicker
move to outpatient care may reduce expenditures by the healthcare system, however,
savings are exacted in terms of psychological, physical, and financial burdens at
home. And, often, a cancer patient may become debilitated or die in the prime
wage-earning years, leaving a legacy of lost income.
Another key issue, both for cancer care and other illnesses, is that caregiving is
a woman’s issue. Most studies show that the number of women caregivers far
surpasses the number of men caregivers. According to a recent report from the
14 Cancer Caregiving: Policy and Advocacy 267
Foundation for Accountability and The Robert Wood Johnson Foundation (2001),
68% of caregivers are women. The Family Caregiver Alliance (FCA 2006) reports
that estimates of the percentages of family or informal caregivers who are women
range from 59 to 75%.
In addition, by all accounts, women unequivocally are the ones who quit their
jobs or take leave as well as provide more physical and nursing care than men.
As Carol Levine, from the United Hospital Fund (UHF), observed, “The AIDS
epidemic has lessons for caregivers. The male caregivers expected more and they got
it” (Giorgianni 1997). Men expected more and asserted themselves, and that is what
cancer caregiving advocacy needs.
Advocacy
Greta Greer, a social worker for the American Cancer Society (ACS), effectively
summarized the challenge to cancer care advocacy when she said: When you ask
a caregiver what she needs, you get a horrified look, like addressing her needs will
take away from the patient’s care (Greer 2002, Personal communication). Because
of the relatively acute nature of cancer, as well as the fact that it can strike people in
their prime, cancer caregivers are transformed into acute care nurses who barely can
see beyond their responsibility to the patient.
Advocacy and consumer organizations have largely provided cancer-related in-
formation and referral to information resources (Shelby et al. 2002). However, the
changing trajectory of cancer to a more chronic condition, as well issues surrounding
survivorship, may change the cancer caregiver’s exclusive focus on patient suf-
fering. Online support groups for cancer caregivers, including one from the ACS
at http://www.acscsn.org, are providing ways for cancer caregivers to share their
difficulties—psychological, physical, and financial. At the same time, they are help-
ing cancer caregivers recognize common difficulties in cancer care—from costs of
care to need for information to help caregivers. In addition to numerous resources
to help caregivers cope with the demands of being a caregiver, the ACS website also
provides a link to the American Cancer Society Cancer Action Network (ASCAN).
As a nonprofit, nonpartisan advocacy affiliate, this organization assists interested
individuals to participate in political activism on the national or state level to make
the fight against cancer a priority agenda item (ACS 2012a). Strategies to make one’s
voice heard through written messages or face-to-face meetings with legislators are
also clearly described on the ACS website (ACS 2012b).
While caregiving advocacy initially grew out of efforts on behalf of caregivers
for the aged, these efforts now are providing momentum for cancer caregiving advo-
cacy. In July 2001, The NationalAlliance for Caregiving (NAC), in collaboration with
the Partnership for Caring, convened a Caregiver Empowerment Summit to create
a movement for caregivers. In the proceedings of the Summit, it was observed that,
“Large-scale change to help family caregivers—through public laws, healthcare ben-
efits, and workplace policies—is needed, however, cannot happen without a unified
political voice. Despite their huge numbers, at present, American caregivers have
none” (NAC 2001). Meeting participants called for a collaboration among all family
caregivers to impact public policy, develop public awareness about caregiving, and
create a grassroots plan to promote activism.
Two caregiving organizations originally started for caregivers for aging persons,
The NFCA and NAC took on “The Family Caregiver Self-Awareness and Empow-
erment Project” to bring together family caregivers for persons with mental illness
to mental retardation, and from cancer to AIDS. The goal is to develop “self aware-
ness as a potential trigger to empowerment and action” (Hoffman 2002). The project
started with a literature review and communications audit on self-awareness and em-
powerment, which it published online in February 2002. According to the report, the
review confirms “that millions are taking on the heavy burdens of caregiving without
acknowledging the magnitude of those burdens on every aspect of their lives. Even
those organizations and individuals who seek either to serve caregivers or to capi-
talize upon the existence of this new population are slow to recognize the inherent
conflict so many caregivers face.” The project is identifying these caregivers who
think of themselves as wife, husband, or daughter of the patient without recognizing
their need for support as caregivers. Once it is clear where and who the caregivers
are, the project will develop a communications campaign to reach them and help
them take actions to gain assistance they need.
At the same time, as part of its series on Strengthening Families and Communities
for Caregiving, the NFCA conducted Town Hall Meetings in five cities (Philadelphia,
Washington, DC, Chicago, Boston, and San Francisco) in 2002–2003 to encourage
dialogue on the needs of family caregivers. Again, although the NFCA was created
for caregivers of elderly persons, the goal—and effect—is to focus attention on needs
of all caregivers.
At the end of the twentieth century, the Rosalynn Carter Institute for Caregiving
(RCI) ushered in a new era for caregiving advocacy when it adopted caregiving as its
priority. Through partnerships with professionals, groups, and individuals, the RCI
is stimulating and supporting public awareness activities and advocacy for better
caregiving practices. To strengthen the impact of these efforts, the RCI established
the National Quality Caregiving Network in 2007, which supersedes the RCI’s spon-
sorship of the National Quality Caregiving Coalition (NQCC), which was founded
in 1990.
Current Status
Federal Legislation, Regulations, and Initiatives
Support of Federal policies to improve the well-being of caregivers has been limited
and incremental. In 1993, the Family Medical Leave Act (FMLA) was passed into
law, requiring that employers covered by the Act grant employees up to 12 work
weeks of unpaid leave during a 12-month period to care for an immediate family
member with a serious health problem. Although this was a landmark law, it leaves
out many caregivers. For one thing, the law applies only to employers of 50 or more
employees, so small businesses are excluded. And, for another, many caregivers sim-
ply cannot afford to take leave without pay for 3 months. Efforts to expand provisions
within the FMLA during the 108th and 109th Congressional sessions have been un-
successful, however, have included attempts to both increase the eligible employee
base as well as provide some paid leave within the allotted time away from work
(National Center on Caregiving [NCC] 2006).
The National Partnership for Women and Families has made family leave poli-
cies an important piece of their policy agenda. In addition to grassroots lobbying
efforts to expand FMLA provisions, they have produced a detailed guide to the
FMLA. This document explains provisions in the law addressing specific individual
and family situations requiring a work leave. A comprehensive 2006 publication,
Where Families Matter: State Progress Toward Valuing America’s Families, provides
an overview of the paid family and medical leave initiatives that were introduced in
state legislatures during 2005.
Another milestone for caregiving came in the year 2000, when the Older Amer-
icans Act was amended to include the National Family Caregiver Support Program
(NFCSP), which provides funding for states to work in partnership with area agen-
cies on aging and local community service providers on providing basic services for
family caregivers. The five services for caregivers identified in the program include:
information about available services, assistance in gaining access to support services,
individual counseling and caregiver training to assist caregivers in solving problems
related to their caregiving roles, respite care, and limited supplemental services to
complement care provided by caregivers. However, this program also comes with
significant limitations for cancer caregivers of younger patients. As it is part of the
Older Americans Act, it applied only to family caregivers of adults over 60 years or
to grandparents or other relatives of children 18 years or younger.
Several caregiving-related bills received the attention of the 109th Congress. H.R.
6197, the Older Americans Act Amendments of 2006, was passed by the 109th
Congress and signed into law on October 17, 2006. As Public Law 109–365, the Act
amends the Older American Act of 1965 to authorize aging appropriations for fiscal
years 2007 through 2011. The Act also lowers the age from 60 to 55 years for grand-
parents and other relatives caring for children 18 years or younger (Administration
on Aging 2012a).
The Caregiver Assistance and Relief Effort (CARE) Act of 2005 was introduced
again in 2006 with the aim of providing funding and incentives for caregiver support
and long-term care assistance. It would also amend the Internal Revenue Code,
allowing a tax credit to caregivers assisting family members to meet care needs.
Also introduced in the 109th Congress was the Re-Entry Enhancement Act, which
included a provision to totally eliminate the age requirement for relative caregivers
under the NFCSP. Neither of these bills made it out of committee (NAC 2004).
A highlight of 2006 was passage of the Lifespan Respite Care Act of 2006 (HR
3248). The legislation, originally introduced in 2002, was signed into law by the
President on December 21, 2006. TheAct authorizes US$ 289 million over 5 years for
state grants to develop Lifespan Respite Programs. Programs are to provide assistance
to families in obtaining quality, affordable respite care. The Act defines lifespan
respite programs “as coordinated systems of accessible, community-based respite
care services for family caregivers of children and adults with special needs.” The law
authorizes funding in four areas: (a) development of state and local lifespan respite
programs based on models and best practices; (b) planned or emergency respite care
services; (c) training and recruitment of respite care workers and volunteers; and (d)
caregiver training (Administration on Aging, 2012b).
Although targeted primarily toward caregivers of the elderly, the Administration
on Aging (AoA) has developed the NFCSP, mentioned earlier, with a focus on con-
sumer education. Information about program eligibility and services is provided
through written information, televised public service announcements, and other in-
formation accessed through their website. Especially useful for caregivers and care
recipients of all ages is a link on the home page to a document produced by the
National Conference of State Legislatures, Family Caregiver Support—State Facts
at a Glance, providing detailed information about programs and services available
in every state (Link et al. 2006). Another link on the AoA website is to the Com-
pendium of Department of Health and Human Services (HHS) Caregiver Support
Activities, which reflects several programs that add to our understanding of caregiv-
ing prevalence and to our awareness about caregivers in the workplace (HHS New
Freedom Initiative Caregiver Support Workgroup 2006). The projects and services,
however, focus on caregivers for elderly people or children with disabilities and not
on caregivers for people with cancer.
Similarly, the Center for Medicaid and Medicare (CMS) has developed a project
that targets caregivers for elderly people, however, is breaking ground by exploring
issues that often affect caregivers for people with cancer: caregivers in the workplace.
The CMS Caregiver/Employer Project provides tools and information for caregivers
of seniors on Medicare, and it is conducted through employers with caregiver em-
ployees. The materials, Medicare and Eldercare Essentials: A Toolkit for Employers,
has several components: Medicare Basics, for caregiver decisions; When Employees
Become Caregivers: A Manager’s Workbook, for employers to assist employee care-
givers; and New Medicare Prescription Drug Coverage: A Message for people Who
Care for Someone with Medicare (Centers for Medicaid and Medicare Services
2006).
Another issue, the major role of women as caregivers, was addressed in the context
of aging at a hearing sponsored by Senators John Breaux and Barbara Mikulski in
February 2002. Although the hearing was part of an effort to encourage legislative
changes in the long-term care system that would acknowledge the role of women
as caregivers, the concerns explored touched on the realities of cancer caregivers.
Experts testified on the disproportionate share of caregiving assumed by women and
the effects on their health, as well as additional costs related to caregiving expenses
such as transportation, utilities, and dietary needs.
Accrediting agencies potentially can play a powerful role in requiring healthcare
agencies, such as home healthcare facilities, to standardize its support and training of
family and informal caregivers of chronically ill cancer patients. To date, however,
that role is more of an implicit than explicit one. Two major players responsible
for accrediting healthcare agencies are the Joint Commission on Accreditation of

Healthcare Agencies (JCAHO) and The National Commission for Quality Assurance
(NCQA). As of April 2007, minimal information related to family caregiving was
available on either the JCAHO (five articles, primarily from other sources) or NCQA
(one article related to professional caregiving) websites.
Accrediting Organizations
The National Committee for Quality Assurance (NCQA) is a nonprofit organization

that sets standards for the quality of care and service that health plans provide to
their members (NCQA 2011a). Three different tools are used to evaluate healthcare:
accreditation (a rigorous on-site review of key clinical and administrative processes),
the Health Plan Employer Data and Information Set, and a comprehensive member
satisfaction survey. Of the three activities, NCQA’s accreditation of organizations
from HMOs and PPOs to Managed Behavioral Healthcare Organizations (MB-
HOs) could have significant impact on informal caregivers. However, review of the
standards used to evaluate and accredit these organizations reveals no reference to
informal caregiving. One category NCQA uses in its accreditation process is “Living
with Illness,” and a key question is, “How well does the health plan care for people
with chronic conditions (NCQA 2011b).” Without question, assessments could be
included that focus on support and education of family caregivers.
The Home Care Accreditation section of the JCAHO website (http://www.jcrinc.
com/HC-Resources) identifies the types of programs that are part of JCAHO’s ac-
creditation process, most of which are clearly relevant to cancer caregiving. They are
Home Health, Personal Care and/or Support, Home Medical Equipment, and Hos-
pice (JCAHO 2012). Although the standards primarily relate to services provided
by healthcare professionals, several of the National Patient Safety Goals used in the
accreditation process specify involvement of patients and families. They are Goal 2:
Improve the effectiveness of communication among caregivers, Goal 7: Reduce the
risk of healthcare-associated infections, Goal 8: Accurately and completely recon-
cile medications across the continuum of care, Goal 9: Reduce the risk of patient
harm resulting from falls, and Goal 15: Identify safety risks inherent in the patient
population (JCAHO 2010).
State Policies
Activities on the federal level, from the NFCSP to the New Freedom Initiative, in-
creasingly have handed states considerable responsibility for providing community
services for the elderly and for persons with cognitive impairments and developmen-
tal disabilities, as well as for their caregivers. The federal government has handed
states responsibility for services for the frail elderly and persons with disabilities, and
the high cost of this care, along with a consumer movement to help family members
live at home, fuel a growing trend for state policies that support family caregiv-
ing. Lynn Friss Feinberg, Deputy Director of the NCC of the FCA, comments on
another motivation, “Family caregiving is a growing issue for states rising societal
value placed on caregiving as more women and caregivers now hold elective offices”
(National Health Council [NHC]and National Quality Caregiving Coalition [NQCC]
2002, p. 14).
Services are largely targeted to caregivers of elderly persons and the cognitively
impaired, however, they support growing acknowledgment caregiver needs in gen-
eral. Given the dismal financial climate for states, the economic benefits of supporting
family caregivers have become clear to most state governments. Although funds may
be far from adequate, the incentives for state policies on caregiving are enormous.
State funding is pieced together from a variety of sources. The NFCSP, which the
U.S. Administration on Aging administers for elderly recipients care, provides lim-
ited funding. General revenues and the US$ 286 billion, 25-year settlements in the
late 1990s between states and the tobacco industry provide a major source of funding.
Medicaid waivers, specifically for home- and community-based services (HCBS) for
frail elderly, provide services that indirectly benefit caregivers by enhancing recipient
care, such as training and respite services. However, for the most part, this funding
does not benefit caregivers of persons with cancer.
As previously referenced, the National Conference of State Legislatures, in as-
sociation with the National Association of State Units on Aging, has developed a
document detailing a state-by-state description of programs for caregivers of the el-
derly. An additional resource developed by the Family Caregiver Alliance (FCA) in
2004, The State of the States in Family Caregiver Support: A 50 State Study, provides
a broader and more detailed review of state programs available to patients and their
families of all ages (Feinberg et al. 2004). Available in PDF format through their
websites, these resources can be used by caregivers of cancer patients to determine
if specific programs might be applicable to them. Contact information for the state
agency administrating each program is also provided.
In a policy research report, Family Caregiver Support Services (Feinberg et al.
2005), the AARP describes services offered by states to caregivers, primarily
through NFCSP funding. These include:
• Information to caregivers about available services.
• Assistance to caregivers in gaining access to services.
• Individual counseling.
• Organization of support groups.
• Caregiver training in making decisions and solving problems relating to their
roles.
• Respite care for temporary relief from caregiving responsibilities.
• Supplemental services to complement care provided by caregivers.
Through its Public Policy Institute, the American Association of Retired Persons
(AARP) has produced a scorecard identifying how well individual states have done
in delivering long-term services and supports to older persons, individuals with
physical disabilities and family caregivers. Twenty-five individual indicators were
used to assess state performance and identify characteristics of those with the highest
level of supportive public policies (Reinhard et al. 2011).
The FCA seeks to advance the development of high-quality, cost-effective policies
and programs for caregivers in every state through its NCC established in 2001. Its
recent 50-state study of caregiver support programs, funded by the AoA, describes
publicly-funded programs developed since passage of the federal act establishing the
NFCSP (Feinberg et al. 2004). Through surveys and telephone interviews, detailed
state information enabled the authors to key themes in state program development.
Their findings show:
• Increasingly available, however, diverse and uneven, publicly-funded caregiver
support services across and within states.
• Enhancement and innovation in caregiver support services due to the NFCSP,
however, inadequate funding to service most caregiving families.
• Broad recognition of the value of uniformly assessing caregiver needs, and the
importance of adequate training and technical assistance in this area.
• Mixed views among the states on the importance of caregiver support services,
approaches to systems development, and methods to integrate family caregiving
programs into existing home- and community-based care.
The 50-state study is supplemented by a web-based searchable resource map, en-
abling easy access to information about individual state caregiver programs. NCC
web links to current state-by-state legislation offers detailed information for each
state, however, is not regularly updated. However, a free electronic newsletter, Care-
giving Policy Digest, provides semimonthly information about new state legislation
and policy. The newsletter also covers federal legislation, policy and reports, as
well as international news, upcoming conferences related to caregiving, and funding
opportunities for caregiver research.
A more in-depth FCA report, Family Caregiver Support: Policies, Perceptions
and Practices in 10 States Since Passage of the National Family Caregiver Support
Program (Feinberg et al. 2002), identifies commonalities and differences in 10 states
that represent 37% of the U.S. population. Chosen for their diversity in geography,
culture and age range, the states (Alabama, California, Florida, Hawaii, Indiana,
Iowa, Maine, Pennsylvania, Texas, and Washington) were studied through site visits
and interviews with key officials and stakeholders. They represented states with state-
funded caregiver support programs already in place, as well as states that had just
begun to develop programs.
This in-depth focus was intended to stimulate discussion among state leaders about
ways to integrate new NFCSP funds into existing programs of caregiver support,
or how to best create new programs. Although the report reflects state caregiving
emphasis on caregivers for elderly persons, the themes across states provide lessons
for developing cancer caregiver programs. Many of this study’s findings were later
corroborated in the 50-state study, however, others also emerged, including:
• Providing explicit support for caregivers represents a paradigm shift in current
healthcare reimbursement philosophy.
• In addition to limited funding, workforce shortages challenge development and

implementation of caregiver support services.
• Respite care and supplemental services (e.g., consumable supplies) are viewed as
the top service needs of family caregivers.
• Use of consumer-directed options for respite care differs among the states, how-
ever, when available, most families choose relatives, friends or persons they
already know.
• Uniform data collection on family caregivers, especially outcome data, is lacking,
making it difficult to measure the impact of services and assure quality.
The FCA also issues policy briefs, funded through federal grants or nonprofit founda-
tions, which address emerging issues and initiatives in caregiver support. The briefs
addressing working caregivers highlight an important cancer caregiver advocacy is-
sue since family members often balance work and home caregiver demands, and
consumer-directed home care, which provides families direct control over scarce
resources to meet their own specific needs.
Donna Wagner, in her paper on state initiatives for working caregivers, notes
that state programs specifically targeted to working caregivers are extremely limited.
However, she comments, in taking greater initiative to develop partnerships that ad-
dress needs of working caregivers, states can work with state businesses and industry
to promote economic stability and growth (Wagner 2001). One method to achieve
change is through state provisions which build on the national Family and Medical
Leave Act as described by Bell and Newman (2003). State-administered insurance
programs to provide payments for temporary disability or family leave are offered
by some states. Others require employers to allow employees to use sick leave to
care for sick family members. Retention of skilled workers through these types of
initiatives has been shown to benefit employers through lower hiring and training
costs. Pavalko and Henderson (2006) demonstrate that women are still more likely to
leave the labor force when family caregiving is needed then their male counterparts.
However, workers in jobs that provide access to flexible hours, unpaid family leave,
and paid sick or vacation days are more likely to remain employed and maintain
work hours.
Problems related to retirement planning once family caregivers are forced to leave
the workforce to care for loved ones are addressed by Young and Newman in an-
other FCA policy brief (2003). Reduced wages and reduced job security may be
experienced in the short term, however, long-term consequences can impact fam-
ily caregivers as they near retirement age. Factors contributing to this problem are
reduced social security benefits based on earnings, limited access to employer-
sponsored pensions as work hours decrease, and limited personal savings as monies
must be used on current medical expenses.
Consumer-directed home care, although successfully used by some states, con-
tinues to be controversial as it shifts the locus of decision-making and control of
services from providers and payers to consumers and families. In defending the stance
that an ethical imperative exists for paying caregivers, Larry Polivka also acknowl-
edges concern about containing costs. He draws on lessons from early home- and
community-based services waiver programs, and presents suggestions for keeping

expenditures within budget limits, including restrictive eligibility based on func-
tional need, financial resources, and caregiver availability and enabling nonfamily
caregivers to dispense medicine, give shots, and provide other healthcare services
under supervision of a nurse. Polivka also comments that available evaluations of
Caregiver Pay Programs for long-term care recipients in Germany and Austria sug-
gest that paying caregivers is a cost-effective alternative to institutionalization
(Polivka 2001).
Doty (2004) describes three models of consumer direction: (1) control restricted
to hiring and supervision of personal aides or assistants; (2) “cash and counseling,”
which increases resource use options to purchase of needed technology or home
modifications; and (3) a no-strings-attached cash benefit, usually available only from
private insurers. The “cash and counseling” approach was tested on a broad scale
in a three-state Medicaid demonstration project, implemented in Arkansas, New
Jersey, and Florida. Results among Arkansas families participating in the project
showed a decrease in caregiver strain and better well-being, especially among work-
ing caregivers. The absence of serious problems with abuse, neglect, mistreatment,
or financial exploitation by family members or directly hired workers has assisted to
quell concerns among skeptics to these programs.
Following the early success of the “cash and counseling” model, theAoA extended
this initiative to another 11 states in 2004, and the model is also being implemented
in a range of federal and state-funded HCBS programs. A study to identify the role of
consumer-based direction in the United States in 2003 (Feinberg and Newman 2005)
found that the NFCSP appears to be speeding the adoption of consumer direction in
family caregiving support programs. Although personal care and respite care are the
most likely services that families can be paid to provide, spouses are not allowed to
be paid to provide care in nearly two-thirds of these programs.
The reluctance to provide compensation to family members, especially spouses,
reflects some policymakers’ concerns about contributing to a major shift away from
caring as part of normal family responsibility (Kunkel et al. 2003–2004). These
authors summarized empirical evidence that demonstrates that payment to family
members providing care in U.S. programs has not lessened the commitment of family
members to care for their loved ones, and actually contribute to the satisfaction of
both care recipients and caregivers. In a similar theme, Li (2005) demonstrated that
informal caregivers do not relinquish caregiving when publicly paid home care is
available, which is another concern of policymakers.
The fact that these and other caregiving initiatives across states target caregivers
for the elderly or persons with mental impairment highlights the paucity of services
targeting cancer care. However, these programs also serve as models for cancer
caregiving advocacy. For instance, the California Caregiver Resource Center (CRC)
delivers caregiver support services through 11 regional sites throughout the state.
Although an important innovation of the CRC program is a statewide clearing house
on caregiving and cognitive impairment, California has expanded its caregiving ser-
vices to caregivers for adults with other chronic conditions. The Pennsylvania Family
Caregiver Support Program provides up to US$ 200 per month in respite and chore
services to caregivers of persons 60 and older, as well as funding for home modifi-
cation, counseling, and caregiver training. As research continues to demonstrate the
societal benefit of supporting family caregiving in states willing to test innovative
models, advocacy will be critical in convincing policymakers to implement similar
programs.
Education
According to a study in New York City conducted by the UHF and the Visiting
Nurse Service of New York, nearly 60% of New York’s family caregivers do not
receive the training they need to assist in essential responsibilities. These responsibil-
ities include medical tasks, such as managing prescription medications and providing
physical assistance, such as bathing or moving a loved one. The lack of consistent
policies on education and training puts both patient and caregiver at risk (Levine
et al. 2000). Recent attempts to improve education of family caregivers, especially
when loved ones are hospitalized, include web-based publications, such as A Family
Caregiver’s Guide to Hospital Discharge Planning (Hunt and Levine 2002).
Although nonprofit and private groups largely have assumed responsibility for
conducting training for caregivers, state governments are increasingly developing
caregiver support activities that include training, information, and referral services.
A policy brief from the FCA, Federal and State Policy in Family Caregiving:
Recent Victories but Uncertain Future, reviews model state initiatives on education,
many of which are targeted to caregivers of elderly persons (Fox-Grage et al. 2001).
The authors identify model programs in California, Pennsylvania, Washington, and
Maryland. For example, Maryland’s General Assembly established the Caregiver
Support Coordinating Council in the Department of Human Resources to coordinate
statewide planning, development, and implementation of family caregiver support
services.
The Pennsylvania Department of Health has been a leader in funding train-
ing for cancer caregivers through its support of the University of Pennsylvania’s
development of the Strength for Caring program. This program was designed to
help caregivers understand cancer and its treatment, meet the physical and emo-
tional needs of the patient, deal with changing family roles, improve their own
mental and physical health, and find and take advantage of community resources.
With funding from OrthoBiotech, Inc., the program now is available nationwide at
http://www.strengthforcaring.com.
The FCA issued a report to describe five widely used caregiver education and sup-
port programs that have empirical evidence to support their effectiveness (Toseland
2004). Although requiring caregivers to commit to a series of group meetings, the
programs represent diverse ways to fit attendance into the caregiving life, offering
half-day and evening programs supplemented by booklets, workbooks, and videos.
In addition to detailed information about the five programs, this resource provides
guidance to program facilitators in selecting the appropriate program for a targeted
audience, preparing to implement the program and recruiting participants.
There are numerous electronic resources available for cancer caregivers. On the
NAC website, links to several publications for caregivers is provided, some with
reference specifically to cancer caregivers (Met Life Mature Market Institute and
NAC 2007). Resources for Caregivers 2004,produced by NAC and the MetLife
Mature Market Institute, includes sections for caregivers of various major disease
categories. Under “Cancer,” there are three resources described including the Cancer
Survival Toolbox: An Online Audio Resource Program produced by the National
Coalition for Cancer Survivorship (2005). In the toolbox is an audio entitled Caring
for the Caregiver, which was developed specifically to provide resources and support
for cancer caregivers. The NAC also lists Palliative Care: Complete Care Everyone
Deserves as a resource for caregivers who need to understand what palliative care is,
who provides it, and how best to assess its quality.
Caregivers for people with cancer do not typically turn to caregiver organiza-
tions for information; they are more likely to get information from cancer groups.
A 2012 search using the keyword “caregivers” within the ACS website produced
over 40,000 hits, listing articles or resources either produced by the ACS or linked
to other caregiver websites (ACS 2012). Offerings include a brief but supportive
document, Being a Caregiver, as well as articles addressing Concern for Families
and Caregivers, Anxiety Check for Caregivers, and Coping Check-up for Caregivers.
These documents build on findings from professional cancer journals that describe
cancer caregiver research, thus demonstrating the growing interest and concern in
supporting families of cancer victims.
The National Cancer Institute (NCI) at the National Institutes of Health (NIH) has
also expanded its communications efforts to caregivers. Using their website, a search
using the word “caregivers” resulted in the listing of several booklets and other web
resources, specific to the needs of cancer caregivers. They include information and
electronic booklets such as Caring for the Caregiver, When Someone You Love is
Being Treated for cancer, and Family Caregivers in Cancer: Roles and Challenges
(NCI 2012). A link to the Family Care Research Program at Michigan State University
also provides cancer patients and their families with general information about health
management in addition to several information resources specific to family caregiver
issues. NCI also funds research grants on caregiver education and training.
The Family Caregiver Self-Awareness and Empowerment Project, initiated by the
NFCA in 2000 and described on their website, seeks to gain a better understanding of
why so many family caregivers do not self-identify and what can be done to gain their
attention (NFCA 2012). The first phase of this project consisted of market research
to develop a communications strategy to reach family caregivers and resulted in
five reports: A base-line survey conducted by AARP, a communications audit, an
appendix of available information, a caregivers’ focus group report, and a message
testing report. Much of this information concludes that many caregivers are reluctant
to embrace the caregiver label, that they prefer to focus on the quality of care they
provide rather than their own needs, and that media messages must be crafted with
these and other findings in mind. Phase II, the implementation portion of the project,
is currently under development.
For caregivers who can obtain information and support from others through online
exchanges, a blog is available through the WebMD site featuring guest bloggers who
are experts in numerous areas of concern to family caregivers (NHC & WebMD
2012). Discussion topics include insurance issues and legal advice in addition to
numerous questions relating to medical symptoms and treatment options. These
personalized exchanges with numerous types of experts offer caregivers a home-
based approach to troubling questions.
Practice
As Jane Ingham, Director of Palliative Care at Georgetown University’s Lombardi

Cancer Center, observes:
The system does not consistently formally recognize the caregiver as either a part of the ‘unit
of care’ or a part of the care team itself. This occurs even though the caregiver is physically
and emotionally impacted by the illness and even though he or she also may become at a
number of times through the course of cancer care an ‘around the clock nurse.’ Oncology
care is commonly delivered in specialized environments, away from the ‘family practice’
model of care, and thus the caregiver often is not ‘linked’ in any structured way within the
same system of medical care as the patient. Although there is an increasing recognition of
caregiver needs, until a patient reaches the point where care is delivered within the context
of hospice, the systems, policies, reimbursement structures, and attitudes that are commonly
linked to oncology settings do not provide a consistent, supportive structure for addressing
the unique and important care, support and educational needs of caregivers. This lack of
formal recognition anchors the caregiver truly as an ‘informal’ caregiver within a system
that presents significant challenges – rather than supports – to both caregivers and health
professionals as they seek to foster caregiver well-being and good health. (Ingham, personal
communication 2003)
Most initiatives for health professionals to partner with family caregivers are started
in hospitals and hospices. A current example is the Peer Partners Program at Emory’s
Winship Cancer Institute. As one of Emory’s many cancer survivorship programs,
this initiative matches cancer survivors and caregivers with those currently dealing
with a new diagnosis of cancer. One-to-one support is offered by survivors and their
caregivers based on their own personal experiences. In order to facilitate program
success, professional staff offer training and supervision to individuals who volunteer
to become peer partners (Emory 2012).
A long and ongoing project to bring family caregiving to the forefront in part-
nering with health care professionals has also been the work of the United Hospital
Fund (UHF), a research and philanthropic organization in New York City. Spear-
headed by Carol Levine, director of the UHF Families and Health Care Project and
a former spousal caregiver, Next Step in Care is a multiyear project to change usual
practice in health care settings so that family caregivers are involved in planning and
coordinating care for their loved one (UNF 2012).
The Next Step in Care campaign offers free downloadable guides for caregivers to
assist them to understand and navigate complex health care systems. Transitions from
one care setting to another are frequently difficult for caregivers because they are
often excluded from care coordination activities. The guides and associated checklists
provide assistance in ensuring that caregivers remain part of the transition planning
process. Other guides written for health care professionals offer information about
how to work with family caregivers more effectively.
The important practice of provider assessment of caregivers is currently identified
as one of the emerging trends in addressing the needs of family caregivers (Feinberg
et al. 2006). The value of identifying needs of not only the care recipient, but also
their primary caregiver, is recognized as a fundamental need to sustain caregiving
families and help them stay “on the job.” Although caregiver assessments are used
to tailor caregiver services in some states, it is widely recognized that a universal
assessment tool would be beneficial for both practice and research.
In September, 2005, the FCA convened an invitational National Consensus Devel-
opment Conference for Caregiver Assessment, bringing together recognized leaders
in health and long-term care with two goals: to generate principles and guidelines
for caregiver assessment, and to build common ground among leaders committed
to innovation, experimentation, and the systematic generation of new knowledge.
Reports summarizing the conference achievements include the participants’ ability
to form consensus on fundamental principles and practice guidelines for caregiver
assessment. These are applicable to a range of practitioners, providers, and care
managers in a variety of settings (FCA 2006).
Research
In an article investigating where terminally-ill patients look for assistance with

nonmedical needs from personal care to transportation, Emanuel et al. found that
most cancer patients rely completely on family members and friends for assistance
(Emanuel et al. 1999). In a comprehensive summary of five publications that included
the economic value of care provided by informal caregivers to ill and disabled adults,
Gibson and Houser (2007) report that its estimated value is about $350 billion per
year. This figure is more than total spending for Medicaid ($300 billion in 2005) and
is more than four times the total amount spent on formal paid home care services.
Other studies stress the indirect costs of family caregiving. For example, as leading
researchers Barbara and Charles Given observe, “The cost in personal, physical and
mental health of caregivers has yet to be fully explored. What’s known is they often
give up leisure, physical exercise, and proper nutrition. Unknown are the use of
medications such as tranquilizers or other medications and the number of primary
care visits” (Given and Given 2002, p. 1). In another article, Given and Given identify
four areas where research especially is needed: (1) symptom management strategies;
(2) patient-caregiver communication to understand key elements of a productive
patient caregiver relationship; (3) defining patient outcomes as a basis for developing
standards of care; and (4) cost-effectiveness (Given et al. 2001).
Methodological issues have greatly limited research on caregiving. Most studies
on caregivers to date have been descriptive, and there is a paucity of empirical research
including controlled studies comparing caregivers with noncaregivers. There is
a need for instruments specifically designed to evaluate the quality of life of care-
givers of cancer patients (rather than measuring specific outcomes like distress) and
to detect changes in caregiving needs over the course of illness and shifting goals.
The literature reflects that caregiving studies use small samples, rather than the larger
samples that are needed to adjust for different relationships among caregivers to the
patient and for different needs of different cancers. Convenience samples typically
have been used, especially as caregivers often are reluctant to participate in research
when patients are very ill. Population-based studies are needed to explore prevalence
for family-based care and variability in family variables.
In July 2001, the NIH’s National Institute of Nursing Research conducted a State
of the Science Workgroup Meeting on Research in Informal Caregiving (Grady and
Armstrong 2001). The purpose was to identify research opportunities on informal
caregiving, and the workgroup listed three key areas for research investment:
• Informal Caregiving Populations, including persons with cancer, diverse popula-
tions, and hard to reach groups.
• Caregiver Knowledge, Skills, Support, including developing instruments for
outcome measurement.
• Impact on the Caregiver, including influence of family dynamics, evaluation of
effectiveness, and financial impact.
Future Directions and Conclusion
Reflection on the advances made in policies and programs benefiting family care-
givers during the early 2000s has relevance for anyone committed to improve the
ability of cancer caregivers to care for themselves and their loved ones. This summary
of current initiatives has relevance for further work in political and regulatory advo-
cacy, education of both families and healthcare practitioners, professional oncology
practice, and research to further identify caregiver needs and how best to meet them.
Advocacy and Policy Development
The need to support family caregivers was most prominent in the policy arena with
the passage of the 2000 Older Americans Act and development of the NFCSP.
Although this initiative resulted in more state caregiver programs, budgetary con-
straints have limited program expansions, both in terms the populations served and
services available. However, efforts to educate policymakers and health profession-
als about the needs of specialty caregiver groups, such as cancer caregivers, must
continue so that awareness of needs can precede opening of the “policy window” in
the future.
Although the major caregiver groups advocate for “caregiver-friendly” policies
and programs on the national level, advocacy for the specialty needs of cancer care-
givers may be most effective on the state and local levels where legislators are
most accessible. In addition, specific caregiver populations served by federal and

state-funded programs are often determined by state agencies, based on available
information. Specific actions that can be taken to advance development of beneficial
policies and programs include:
• Educate state lawmakers, especially those who serve on committees which review
health legislation, about the realities of care needs at home preceding, during, and
after cancer therapies. Use stories of families’ experience with cancer, especially
families in congressional districts which these legislators represent.
• Be ready to identify specific changes in family leave policies that would alleviate
both short- and long-term burden on families facing unexpected care needs. Look
to states that have implemented beneficial programs as examples of change.
• Link cancer caregiver needs to the benefits that the business community realize
when policies and programs support these employees through enhanced leave
options, ability to use sick time, or transfer of sick time use from other willing
employees.
• Investigate expansion of tax credit options for cancer caregivers with local and
state governments.
• Educate payers of healthcare about the benefits of family cancer care in enhancing
patient outcomes as well as maximizing scarce professional care resources.
• Utilize the media to highlight the role that family caregivers play in treatment
and ongoing care and support of cancer patients undergoing active therapy as
well as cancer survivors. Use existing annual timeframes which highlight cancer
awareness. On a national level, efforts by professional cancer advocacy groups
to quantify the contributions of cancer caregivers, both in terms of their numbers
as well as care dollars saved, would increase awareness of policymakers and
the general caregiving advocacy community. This strategy has been successfully
used by groups representing caregivers of the elderly, especially those caring for
persons with cognitive disorders such as Alzheimer’s disease.
Education and Communications
The explosion of Internet-based information for caregivers, both through cancer-

specific websites and general caregiver-focused sites, is of great benefit to cancer
caregivers and their healthcare providers. Increasing availability of this information
to all cancer caregivers is the current challenge. We also now recognize that the
term “caregiver” may not be internalized by those providing care at home to their
loved ones. In addition, access to cancer caregivers in the home, especially those
without computer access presents a further challenge. Efforts to increase education
and communication can include:
• Make caregiver information an important part of established cancer resources, in-
cluding 1–800 numbers, especially to reach the large number of cancer caregivers
who are more likely to seek information about cancer than about caregiving.
• Ensure that information for caregivers is linked to cancer websites, and that web-
sites for cancer patients and their families are linked to one another. Links to the
AoA and FCA sites would be particularly useful since they contain a wealth of
caregiver information.
• Begin education and training of caregivers throughout the trajectory of illness,
beginning with diagnosis, before caregivers become overwhelmed by the illness
and responsibilities.
• Identify caregiver resources available for Hispanic and other prominent local lan-
guage communities. When possible, adapt cancer-specific educational materials
for use by local ethnic communities.
• Adapt proven caregiver education programs to the needs of cancer caregivers and
encourage their use through local agencies serving caregiving families.
• Educate healthcare professionals (oncology practitioners, home care nurses, etc.)
who are most likely to have contact with family caregivers of cancer patients about
resources available.
Practice
With the beginning development of standards and guidelines for caregiver assess-
ment, healthcare professionals in all specialty areas will benefit in adequately
assessing caregiver needs. As policies develop, practitioners must also update their
knowledge of laws, regulations, and emerging programs useful to the cancer caregiv-
ing community. Transfer of this knowledge to family members needs to take place
wherever and whenever possible—during hospital admissions, in oncology offices
and clinics, or during home visits. Specific recommendations include:
• Incorporation of standardized caregiver assessment tools at times and in settings
when home caregivers are expected to participate in care and support of their
loved ones.
• A shift in the care paradigm of persons with cancer to the family as the unit of
care.
• Incorporation of updates about policies and programs benefiting caregivers in
beginning and continuing education of oncology and home care healthcare
providers.
Accreditation
• Educate accrediting agencies about the benefits of incorporating involvement of

family caregivers into standards addressing hospital discharge and home care.
Use research findings demonstrating caregiver well-being on patient outcomes.
Use principles underlying the hospice paradigm as an example.
• Encourage development of standards addressing caregiver assessment and direc-

tion to programs which can enhance their well-being and maintain the integrity
of their caregiving role.
Research
• Frame cost studies in the context of the value of caregiving, not as cost-effective-
ness studies. In their issue brief detailing the economic value of caregiving, Gibson
and Houser (2007) note ‘. . . it is essential to prevent family caregivers from
being overwhelmed by the demands placed upon them. The cost of funding more
services and supports for caregivers is minute compared to the value of their
contributions. (p. 7)’
• Develop instruments and approaches that address current methodological limita-
tions of caregiving research. Focus on issues such as measuring overall quality
of life of caregivers, designing controlled studies, and exploring prevalence and
variability of family-based care.
• Conduct studies on caregiver burden, to address the costs of not making better
policies for caregivers.
• Conduct studies on costs of cancer to families, as well as on symptom man-
agement, patient outcomes and best caregiver practices, and caregiver-patient
communication.
• Conduct policy evaluations of programs in countries outside the United States to
pay family caregivers.
Concluding Comments
Cancer is a tragic illness that can cause tremendous suffering and cut lives short.
Care also comes with huge costs to the family caregiver, who takes on tremendous
responsibilities for a loved one. Cancer affects the whole family. And, as a society,
we cannot afford not to support better policies for caregivers.
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Chapter 15
Caregivers of Patients with Cancer: Ethical
Issues
Martin L. Smith and Mary Elizabeth Paulk
Since the 1960s, healthcare treatments, diagnostic procedures, and other interven-
tions have become more effective and hope-filled with each new medical discovery,
technological advancement, and research breakthrough. At the same time, the health-
care delivery has become a more complex, perplexing, and dilemmatic undertaking
due to rising healthcare costs, shifting cultural beliefs (e.g., emphasis on individ-
ualism, freedom of choice, self-determination), disparities in access to treatments,
expanded legal and regulatory oversight as well as litigation, higher expectations for
what medicine can accomplish, and increased life expectancy that can be accompa-
nied by protracted debility and dependence. Due to these and other factors, there is
a growing need for both professional and family caregivers to consider the ethics of
cancer care.
In this more complicated arena of healthcare provision, cancer professionals
need ethically based knowledge, understanding, awareness, and skills to better pro-
vide high-quality care to cancer patients and to address the needs of caregivers. This
chapter is designed to help healthcare professionals become more aware of and un-
derstand how ethical issues and decision-making involve and impact caregivers of
patients with cancer, particularly when patients approach the end of life. To the ex-
tent applicable, this chapter will focus on practice, research, education/training, and
policy/advocacy of the ethical elements to be reviewed. In keeping with the overall
structure of this book, current status (what is known) and future directions (what
is needed) will be noted. In the United States and many other parts of the world,
the fields of bioethics and clinical ethics have been greatly influenced by the iden-
tification and explication of basic principles and duties of healthcare professionals,
M. E. Paulk()
Division of General Internal Medicine,
University of Texas Southwestern Medical Center,
5323 Hines Boulevard, Dallas, TX 75390-8889, USA
M. D. Anderson Cancer Center, Houston, TX, USA
Center for Ethics, Humanities, and Spiritual Care,
Cleveland Clinic, 9500 Euclid Avenue, Cleveland, OH 44195, USA

288 M. L. Smith and M. E. Paulk
therefore, some guiding and foundational principles will first be presented briefly
and then used as foundational reference points for the material and information that
follow.
Guiding Ethical Principles: What Is Known
Clinical ethics refer to the day-to-day moral decision-making of those caring for
patients (Callahan 2004). As a precursor to concrete, practical decision-making,
“Healthcare professions typically specify and enforce obligations, thereby seeking
to ensure that persons who enter into relationships with their members will find them
competent and trustworthy” (Beauchamp and Childress 2001). Sources for identi-
fying such ethical obligations include the codes of ethics of the various healthcare
professions, including medicine, nursing, and the multiple allied health professions.
However, many of the duties and obligations asserted in such codes can be viewed
as derived from an even more fundamental set of principles: respect for patient au-
tonomy, nonmaleficence, beneficence, and justice (Beauchamp and Childress 2001).
These four principles are generally regarded as important for guiding and creating a
framework for treatment decisions and will be useful for discussing the ethical issues
and dilemmas faced by caregivers.
Respect for Autonomy
The first bioethical guiding principle is respect for patient autonomy and for patient
self-determination. Such respect includes recognizing and promoting individuals’
freedom to make their own choices without the controlling influence of others. Re-
spect for autonomy undergirds the doctrine of informed consent, which obligates
healthcare professionals to provide patients all materially relevant information when
treatment decisions are to be made, to involve patients as partners in their own
treatment decisions, to involve family members and caregivers when patients lack
decisional capacity (i.e., “competence”) to make their own decisions, and ultimately
to respect the wishes and choices of patients. In most situations, patients with de-
cisional capacity must authorize medically recommended diagnostic procedures or
treatments through the informed consent process. It is also the process by which they
are educated, in language and concepts understandable to them, about the nature,
purpose, risks, benefits, and alternatives of the proposed procedure or treatment.
Life-threatening and emergency situations are exceptions to this general rule. A sig-
nificant implication to the fact that patients in most situations must first authorize
their own treatments is that informed patients with decisional capacity can also refuse
recommended treatment at any time, including after signing informed consent forms.
Respect for autonomy is also the guiding principle behind other professional duties
such as veracity (i.e., truth telling) and confidentiality.
15 Caregivers of Patients with Cancer: Ethical Issues 289
Nonmaleficence
The second bioethical principle is nonmaleficence, or the “do no harm” principle,

obligating healthcare professionals not to inflict harm intentionally on patients. In
the concrete reality of clinical practice and cancer care, the professionals, patients,
and caregivers must understand that little is able to be done diagnostically or by way
of treatment without some harm, risk of harm, or negative side effects (such as those
resulting from the administration of chemotherapy). A simple surgical example is the
use of intravenous (IV) fluids after tumor resection. The fluids may help to stabilize
a patient’s blood pressure transiently, which is the goal of the IV intervention, but
they risk pain or infection at the IV site, increased urine output leading to bed sores,
or pulmonary edema. In each circumstance resulting in some harm or risk of harm
to patients, the anticipated burdens of the intervention must be weighed against the
potential or likely benefits, with the aim of minimizing harms while maximizing ben-
efits. From an ethical perspective, based on nonmaleficence, healthcare professionals
do not have an obligation to provide treatments that they know will be excessively
harmful or burdensome to patients and which will have little or no benefit. Although
there has been an extensive published literature since the late 1980s about the issue
of “medical futility” and patient and caregiver demands for treatments judged to be
medically inappropriate, more research is needed to understand how often and why
physicians and other professionals accede to such demands.
Beneficence
The companion principle of nonmaleficence is beneficence. Stated simply, benefi-

cence obligates professionals “to do good” and to promote patient benefit, health, and
well-being. This should be the goal when any treatment or diagnostic procedure is
presented to patients and then initiated. Medical advice and recommendations should
always be based on what physicians and the other members of the healthcare team be-
lieve to be in patients’ best interests and what is medically appropriate. Professionals’
efforts to achieve and maintain clinical competence and skills support the principle of
beneficence. To the extent that cancer professionals have knowledge and expertise to
administer up-to-date treatment regimens of chemotherapies or bioimmunotherapies,
for example, and apply appropriate palliative and symptom-management agents and
techniques, they are fulfilling the ethical obligations associated with beneficence.
Neither beneficence nor nonmaleficence is a stand-alone principle in clinical prac-
tice; the benefits and burdens of proposed treatments or procedures must always be
considered together and weighed against each other.
Justice
The fourth guiding principle of bioethics is justice. The principle of justice demands
fair, equitable, nondiscriminatory, and appropriate treatment in the light of patients’
medical needs. A moral maxim often associated with justice is that healthcare pro-
fessionals should treat similar patients similarly. In situations where there are limited
healthcare resources (e.g., ICU beds, nurses, time, money), justice obligates profes-
sionals, healthcare organizations, and society to identify fair and ethically justified
criteria for the allocation and distribution of those limited resources.
Issues of justice or fairness arise in many different situations in cancer care. For
example, a bedside nurse ought to provide each patient and family caregiver with the
level of care and attention needed. If she spends a disproportionate amount of time
with a single patient or family (perhaps because they are friends or acquaintances),
she deprives other patients of their fair share of her time and attention. However, on
a more macro, organizational level, if this same nurse is assigned a disproportionate
number of patients because of nursing personnel cut-backs and she is unable to attend
to the legitimate needs of her assigned patients and caregivers, the organization may
have the greater culpability regarding the injustice and patient safety issues that have
been created.
Many other issues related to justice exist on a societal level and even on the
global level, such as whether indigent patients without healthcare insurance should
have equal access to expensive treatments like bone marrow transplantation (BMT).
Within a healthcare delivery system with limited resources, every possible treatment
or intervention cannot be offered to all patients. Therefore, when making allocation
decisions, healthcare professionals, organizations, and society must articulate fair
criteria that will be equitably applied to all similar patient cases.
These criteria should be transparent and available publicly so that patients and
caregivers can understand the bases for allocation decisions, especially if and when
they are denied needed or desired treatment. National policies do not exist in the
United States to guide cancer centers and professionals as well as to promote consis-
tent and fair allocation of resources and access to cancer treatments. Although cancer
centers can and do differ in expertise and specialization, development of general and
agreed-upon criteria for appropriate access to cancer treatments could help to create
a more just system nationally in the distribution of limited resources.
Standards for Decision-Making: What Is Known
Clinical decision-making and the clinician-patient relationship have undergone ma-

jor revolutionary changes in the United States, starting in the last quarter of the
twentieth century. Prior to the 1970s, the prevailing model for decision-making
was paternalism. This model was founded on physicians’ commitment to patients’
well-being and the ethical principles of beneficence and nonmaleficence, and was
dominated by physicians’ expertise and authority. In this model, the patients played
a passive, almost child-like role of obediently and unquestioningly following physi-
cians’ orders. Paternalism has been replaced now by an expectation of partnership
between healthcare professionals (especially physicians) and patients. The partner-
ship model continues to affirm clinical expertise but recognizes patients’ expertise as
well, i.e., that patients are the most knowledgeable persons about their own values,
goals, and preferences, all of which should be incorporated into clinical decisions for
a particular patient. A partnership model emphasizes mutuality and shared decisions
between clinicians and patients. As a result of this partnership model, new standards
for clinical decision-making have emerged, based on respect for patient autonomy
and patients’ abilities to participate in their own healthcare decisions.
The Gold Standard: Currently Competent Patients
The gold standard for clinical decision-making involves patients who currently have
decisional capacity and are able to engage presently in the process of informed con-
sent, i.e., patients’ wishes are known simply by talking to them. Most adult patients
receiving outpatient cancer care, and many hospitalized patients, meet the gold stan-
dard. If disagreement arises between patients and healthcare teams, other treatment
goals can be negotiated or patients may choose to seek care from other physicians.
Also, as some pediatricians and others have asserted, some mature adolescents may
be able to meet this standard as well (Leikin 1983; Weir and Peters 1997; Weithorn
and Campbell 1982).
Occasionally, questions arise about whether patients currently have sufficient
cognitive skills to be able to make their own healthcare decisions. For a variety
of reasons (e.g., sedating medications, side effects of chemotherapy, stroke, head
trauma), the patients may experience temporary or permanent loss or diminution of
their cognitive abilities. When doubts arise about a patient’s mental faculties, the
primary physician has the responsibility to assess the patient’s decisional capacity.
The input from mental health professionals (e.g., a psychiatrist, a neuropsychologist,
or a mental health social worker) may be helpful and appropriate. Ultimately, the
patient should be assessed for specific cognitive abilities to: (a) express a choice,
(b) understand relevant information, (c) appreciate the medical situation and its
consequences, and (d) reason with relevant information (Grisso and Appelbaum
1998).
The Silver Standard: Once Competent Patients
When a patient who once had decisional capacity is judged currently to lack deci-
sional capacity, the silver (or second best) standard for decision-making is needed.
The goal of those responsible for making decisions on behalf of the patient (profes-
sionals, family members, and other caregivers) is to identify, to the extent possible,
the patient’s values and any previously expressed preferences and wishes for the spe-
cific medical situation now being faced by the patient. Previous conversations that
the patient may have had and the patient’s life-style, values, and attitudes may help
surrogate decision makers to discern and extrapolate to the current medical situation
what the patient may have wanted. In essence, for the silver standard of decision-
making, those involved should aim to make a substituted judgment on behalf of the
patient in accordance with the patient’s values and previously expressed wishes. The
situation for surrogate decision makers can be complicated because they often make
assessments of patients’ preferences and quality of life that are different from either
those of the patient or those of the medical team (Sulmasy et al. 1998). Substituted
judgment should only be used if there is reason to believe that it can be done ac-
curately, and that it will reflect the patient’s wishes, i.e., the persons and caregivers
representing the patient’s views should have actual knowledge of the patient’s wishes
and represent them honestly.
The Bronze Standard: Never Competent Patients
Finally, if the patient has never had decisional capacity or there is no information
that can give caregivers an insight into what the patient would have wanted, then
the criterion for decision-making becomes the patient’s best interest. Examples of
patient profiles when the best interest standard is needed include pediatric patients,
patients with severe mental retardation, and other patients for whom nothing is known
about their life-styles, values, or previously expressed wishes. For decision-making
standards that emphasize respect for patient autonomy, the best interest standard is
the bronze (or third best) standard. Here, healthcare professionals and caregivers,
without the assistance of patients’ previously expressed directives, must weigh the
burdens and benefits of treatments with the aim of making decisions that will be
medically best for patients.
Cultural Cautions Regarding Standards for Decision-Making:

What Is Needed
In the above discussion about the four fundamental ethical principles and the three
standards for decision-making, there is a tendency in the United States and other
western democratic societies to emphasize respect for patient autonomy when there
is a conflict between and among autonomy and the other ethical principles and
duties. This tendency is compounded (and supported) by a western rationalist U.S.
cultural view of the human person as an independent decision maker whose individual
freedom needs to be protected—and even isolated—from the influence of others. For
example, in most situations in U.S. healthcare delivery, informed adult patients with
decisional capacity have the right to refuse recommended treatments such as blood
products or curative chemotherapy, regardless of the perspectives of others or the
consequences of the decision for the patients’ caregivers. In essence, from a U.S.
cultural perspective, supported by mainstream bioethics and law, patient autonomy
tends to “trump” other ethical principles and considerations, such as the patient’s
best interest as perceived by others around them.
Nevertheless, in the actual clinical application of the four guiding bioethical prin-
ciples (with an emphasis on patient autonomy), the process of decision-making is
not always so easy and straightforward. One reason for the difficulty and challenge
is that the system and standards of ethical decision-making used in the predominant
U.S. culture can be very different from other cultures, subcultures, and countries.
For example, in some cultures that emphasize a more familial, communitarian, or
human-interdependence approach to decision-making, there may be an expectation
that healthcare decisions are based on the wishes and needs of the family rather than
those of the individual patient. Also, patients in some cultures and subcultures (both
inside and outside the United States) may not wish to receive information about ter-
minal cancer diagnoses directly from healthcare professionals, but would prefer to
have it first disclosed to close family members (Freedman 1993).
Further complicating cultural considerations for decision-making is that physi-
cians and other healthcare professionals operate in a different culture than that
inhabited by most informal or family caregivers. As Crawley et al. (2001) point
out:
The fact that medicine itself is a cultural system is often hidden from our awareness. Those
of us embedded within the biomedical system learn to assume the authority of science.. . .
Death as a medical event has its own specific language, values, and practices that must be
translated, interpreted, and negotiated with patients, families, and communities who are
outside of the professional domain of medicine. . . . Although the values held by medicine
may privilege ethical notions of individual autonomy, disclosure, and informed choice, these
values are not universally shared. (p. 40)
That values and the ranking of ethical principles are not universally identical may
form the basis of conflict among patients, caregivers, and professionals, and even
within families. It is very possible to have two or more people (or groups) promoting
what they believe is in a patient’s best interests and who propose very different
clinical decisions and actions.
While it may not be appropriate to ask family members or caregivers to make de-
cisions for patients unless a patient has requested that this be done, there is increasing
support for an approach that incorporates family members and caregivers into the
decision-making process to the fullest extent possible without compromising the in-
terests of the patient (Kuczewski 1996). It can be argued that in many circumstances,
attention to and caring for the whole family may be the best way of caring for the
patient.
Advance Care Planning: What Is Known
As noted previously, substituted judgments are only as good as the knowledge that
the surrogates have about patients’ wishes, preferences, and values. Some patients
may have had very specific discussions with family, friends, caregivers, physicians,
or other healthcare professionals about their wishes and treatment preferences related
to particular clinical situations. However, most adult patients have not engaged in
such conversations or in what has been called “advance care planning.”
Emanuel et al. (1995) describe advance care planning as a multistage process
that promotes individuals stating their preferences for future medical care in the
event of decisional incapacity. There are three stages to this patient-centered process:
(1) thinking about preferences and proxies, (2) communicating preferences to others,
and (3) documenting preferences and designated proxies. The goals and benefits of
advance care planning include: (a) extending patient autonomy and control into
situations when decisional capacity has been lost; (b) facilitating communication
and minimizing conflict; (c) decreasing family anxiety, stress, and burden when
significant decisions must be made for the patient; (d) reducing overtreatment or
undertreatment; (e) saving healthcare resources and dollars because treatments the
patient would not have wanted are not initiated or continued; and (f) providing legal
protections for those with ultimate decision-making authority, especially when those
decisions may lead to the death of the patient.
Barriers to Advance Care Planning
Multiple barriers have been identified to explain why most patients seem to avoid
thinking about their preferences and communicating them to others and why many
physicians fail to initiate advance care planning discussions with their patients. An
overarching, cultural barrier is a general societal difficulty with thinking and talking
about dying and death, whether one’s own or someone else’s. Metaphorically, death
is like “the elephant in the room”—present and dominating, especially in situations
of serious illness, yet calling attention to it or direct conversation about it is to be
avoided almost at all costs. A narrower but similar cultural barrier exists within U.S.
hospitals, ambulatory clinics, and other healthcare facilities where the dying and
death of patients (and talk of such) may be viewed as professional medical or patient
failure. The military metaphors often associated with cancer (e.g., the war or battle
against cancer, the therapeutic armamentarium used to counterattack cancer, defend
the body and defeat disease) seem to reinforce the courageous fight that patients
and their physicians are expected to wage, subtly conveying that they have more
control over illness than they actually do. Physicians sometimes fear that death-talk
or death-preparation, especially early in an illness, will be interpreted as a sign of
premature surrender to the assaulting disease.
Practical barriers to serious conversations about advance care planning, especially
if substantive conversations between patients and physicians are envisioned, include
time constraints and compensation concerns (Morrison et al. 1994). Advance care
planning, by the very nature of its cognitive content and emotional evocations, can
be time intensive and psychologically difficult and draining. Oncologists and other
physicians who experience constant pressures to see more patients in the course of a
day in order to generate more revenue could easily relegate advance care planning to
the bottom of a priority list of issues to be addressed during a 10-to-20 minute office
visit with a patient.
Some studies report that patients and physicians have diverse views about who
should initiate advance care planning (Miles et al. 1996). The patients wait for
physicians to initiate such discussions and physicians wait for patients to initiate
such discussions. The result can be mutual misunderstandings and silence about
the issue. A physician’s reluctance to initiate the discussion may be complicated
by discomfort with talking about dying and death, fear of causing patient distress,
a desire to protect patients and maintain their hope, a belief that only older and
seriously ill or terminal patients should be concerned about such issues, and a lack of
training, skills, or knowledge about advance care planning and advance directives.
The patients may be reluctant to initiate advance care planning discussions due to
a fear of their own death, an overestimation of their medical prognosis, the lack
of trust in the physician, a perception that such issues and decisions should remain
private, and cultural standards and practices that emphasize communal or familial
decision-making over the individualism, self-determination, and independence that
can characterize patient autonomy.
Overcoming the Barriers to Advance Care Planning: What

Is Needed
Studies have shown that regarding advance care planning, the patients prefer a re-
alistic approach, particularly if it is individualized to the patient’s situation and the
physician projects confidence and competence (Hagerty et al. 2005; Pentz et al.
2002). Furthermore, as Puchalski et al. have affirmed, patients often view advance
care planning as more than a tool for exercising autonomy and control over decision-
making; they also can consider it as a means to prepare for death and dying, and an
opportunity to strengthen personal and family relationships (Puchalski et al. 2000).
Physicians committed to empowering patients to be partners in their own health-
care decisions are not without practical resources (Marquis 2001) and strategies. Back
et al. (2003) note that a difficulty for physicians treating patients with life-threatening
illnesses is acknowledging and supporting a patient’s hopes while recognizing the
possible seriousness of the patient’s disease. These authors recommend that physi-
cians engage patients in a conversation that has a dual agenda of “hoping for the best
while preparing for the worst.” They assert:
Hoping for a cure and preparing for potential death need not be mutually exclusive. Both
patients and physicians want to hope for the best. At the same time, some patients also want
to discuss their concerns about dying, and others probably should prepare because they are
likely to die sooner rather than later. Although it may seem contradictory, hoping for the best
while at the same time preparing for the worst is a useful strategy for approaching patients
with life-limiting illness. By acknowledging all the possible outcomes, patients and their
physicians can expand their medical focus to include disease-modifying and symptomatic
treatments, and attend to underlying psychological, spiritual, and existential issues. (p. 439)
Within this framework of a dual agenda, these authors recommend five practical
considerations for physicians: (1) giving equal air time to hoping and preparing;
(2) aligning patient and physician hopes, with a first step of directly inquiring from
patients what they are hoping for; (3) encouraging, but not imposing the dual agenda
of hoping and preparing; (4) supporting the evolution of hope and preparation over
time; and (5) respecting hopes and fears, while responding to emotions.
When and with whom should physicians initiate discussions about advance care
planning? One significant factor in answering these questions is the contrast that
usually exists between outpatient and inpatient healthcare settings. In ambulatory
clinics, the patients are often less stressed and anxious, and more likely to be able
to focus on the issues, information, and recommendations associated with advance
care planning.
Furthermore, if a physician incorporates advance care planning into routine clini-
cal appointments with many or most patients, some of the patients’immediate worries
and questions (such as “Why is my doctor bringing this up now? What does she know
about my medical condition that I don’t know?”) may be quickly dispelled when the
physician is able to say: “I’m not singling you out and I’m not holding back medical
information about you. I have these conversations with all my patients.” Intending
the process of advance care planning to occur over time during multiple outpatient
visits allows the physician to introduce the topic, encourage the patient to think about
preferences and discuss them with close family and friends, and reinforce basic in-
formation by providing the patient with take-home materials. These may include
pamphlets, copies of advance directives, videotapes, and value history worksheets
aimed at reenforcing basic information (Leland 2001). Using this kind of a strategy
increases the likelihood that outpatient appointments will be extended only by a few
minutes.
Not all physicians will be persuaded to initiate advance care planning with all
or most of their patients. Nevertheless, there can be specific clinical indicators and
markers that signal a degree of urgency for physicians to initiate end-of-life discus-
sions. Quill (2000) opines that the following situations are more urgent indicators
for meaningful end-of-life discussions: the patients facing imminent death, patients
who talk about wanting to die, patients or families inquiring about hospice, patients
recently hospitalized for severe progressive illness, and patients suffering out of
proportion to prognosis. At a minimum, physicians need to be attentive to patients
manifesting such clinical “triggers” and to respond quickly by initiating advance care
planning discussions with them.
Physicians, when facing the multitude of barriers to be overcome, should remem-
ber that they play a key but not an all-encompassing role in the advance care planning
process. In addition to raising issues, helping the patients understand their diagnoses
and prognoses, and encouraging patients to reflect on their preferences and values,
physicians can and should direct patients, their families, and their caregivers to ap-
propriate support persons and resources. These may include psychologists, social
workers, chaplains, and midlevel practitioners, including physician assistants and
advance practice nurses, who are knowledgeable and skilled in this area.
Documenting Preferences and Proxies: What Is Known
The third stage for advance care planning, as noted previously, is documenting
preferences and designated proxies. All states in the United States now have legisla-
tively approved advance directive forms (with individual state variations), whether
for providing instructions regarding medical treatment in the event of a terminal or
irreversible condition (usually called a Living Will), or for designating a surrogate
or proxy decision maker when a person loses decisional capacity (a Medical Power
of Attorney). Typically, Living Wills can be executed by any adult person with de-
cisional capacity, regardless of current state of health, and are intended to provide
instructions regarding care at the end of life. The more traditional purpose of a Living
Will has been to direct the limitation or cessation of treatment for specified medical
conditions, but some states (e.g., Texas) allow patients to request to be kept alive in a
terminal or irreversible condition using available life-sustaining treatment. In either
case, physicians should be open and honest with patients about their willingness and
ability to honor the advance directive.
Living Wills have been criticized for failing to meet their original purposes
and aims. Fagerlin and Schneider (2004) identified five failures of the living will:
(1) despite their availability in most U.S. jurisdictions for at least two decades, most
people have not completed one; (2) people do not know enough about illnesses and
treatments to make prospective life-or-death decisions about them; (3) it is nearly
impossible for persons to state accurately and lucidly their preferences, due to the
use of especially using generic and vague preprinted documents; (4) the completed
documents are too frequently unavailable to decision makers and caregivers; and
(5) decision makers and caregivers too infrequently understand and follow the living
will’s instructions. The President’s Council on Bioethics (2005) has echoed the same
sentiment about the failure of the living will.
Many commentators acknowledge that documents designating proxy decision
makers are more flexible and more useful than Living Wills. Often called a Medical
Power of Attorney for Healthcare, this document allows the patient to assign respon-
sibility for decision-making to another person (proxy or surrogate) in the event that
the patient is unable to make decisions. The patients do not have to be terminally ill
for this document to take effect. For example, if a patient is sedated during surgery,
and a medical decision is needed, a surrogate decision maker could step in. How-
ever, in an autonomy framework for decision-making, even the more flexible Medical
Power of Attorney is only useful if a patient designates a proxy decision maker who
knows the patient well. It assumes that the proxy understands the patient’s values,
life-style, and preferences, or who has had substantive conversations with the patient
about the patient’s wishes for various anticipated medical circumstances.
In the absence of Medical Power of Attorney, most state laws designate a hierarchy
of decision makers, usually starting with a spouse, and followed by adult children,
parents, and adult siblings. Although such legally prescribed hierarchies, based on
social custom, provide a reasonable default position for patients who do not complete
a Medical Power of Attorney, the legally designated persons might not always be the
best ethical surrogate for the patient. For instance, the person who knows the patient
best (e.g., same-sex partner) could be preferable ethically to a legally recognized
estranged parent. Whenever possible, the perspectives of all legitimately involved
persons should be considered when the “silver standard” for decision-making is
invoked.
Cautions about the Medical Power of Attorney document include: (a) it should not
supersede the patient’s expressed wishes, either in a previously existing document,
or as directly expressed to the physician or other clinicians; (b) it does not apply if
the patient has decisional capacity; and (c) it applies only to medical decisions and
not to other realms of life.
Since 1991, U.S. federal law has required hospitals, health maintenance organi-
zations, and hospices to inquire from patients, upon admission, whether they have an
advance directive (Patient Self-Determination Act: Omnibus Budge Reconciliation
Act (OBRA), 1990). A patient’s response to this inquiry is recorded in the patient’s
medical record; many healthcare organizations encourage patients to provide copies
to be placed in their medical records (La Puma et al. 1991). The federal law is clear
that access to care is not contingent on whether a patient has completed an advance
directive; that is, an advance directive cannot be used as a way for the healthcare
system to limit treatment and care available at the end of life (Levinsky 1996).
Documenting Preferences and Proxies: What Is Needed
Many patients will complete advance directive documents without the participation
or knowledge of their primary care physician or oncologist. In an outpatient setting,
routinely asking patients whether they have completed advance directives can be an
excellent entry into a discussion about advance care planning. Although the execution
of legislatively approved forms is probably the most common manner for patients to
document preferences and proxies, completion of these forms is not the only way to
document patient wishes. When physicians engage patients in such conversations,
written summaries should be documented in the progress notes of patients’ medical
records.
For many patients, self-determination and control may not be the only considera-
tions that they value. Attempts to document patient preferences without exploring the
diverse values that underlie them underestimate the complexity of human decision-
making and are inevitably flawed. End-of-life preferences are best understood not in
isolation, but within a broader context of patient values, cultural traditions, spiritual
beliefs, and social relationships. Only in this way can patient autonomy be truly
respected.
One caution about documenting preferences and proxies is the tendency to reduce
what should be a quality conversational and educational process to the signing of
documents—similar to the tendency to reduce the informed consent process to the
event of getting a patient’s signature on an informed consent form. An argument can
be made that completing advance directives is the least important step in the process
of advance care planning. The first two steps, which include reflection, education,
discussion, and communication, are much more important.
If advance directives do not exist, or they are contrary to what physicians and
others perceive as patients’ best interests, or are in conflict with the wishes of family
members or other caregivers, conflicts can arise. Armed with an understanding of the
guiding principles of bioethics and the standards of decision-making, the strengths
and weaknesses of advance directives, and expectations of families and caregivers
regarding the decision-making process, healthcare professionals in most situations
should be able to negotiate conflicts to find ethically supportable solutions that work
for all participants in the process.
Decisions at the End of Life: What Is Known
Cancer patients, like most people, face significant end-of-life treatment options and
choices. Their caregivers must have an adequate understanding and comfort with
these choices because frequently caregivers will be participants in the end-of-life care
that cancer patients receive (e.g., offering emotional support, assisting with activities
of daily living, administering medications, communicating with the members of the
healthcare team about the patient’s condition). Five major decisions at the end of life
can be distinguished. All five routinely result in the dying and death of the patient,
and therefore their ethical and legal implications have great significance.
Withholding and Withdrawing Life-Sustaining Treatment
For terminally ill cancer patients, decisions are routinely made to forego (i.e., with-
hold or withdraw) life-sustaining treatments such as a ventilator, dialysis, artificial
nutrition and hydration, blood products, and cardiopulmonary resuscitation (CPR).
Decisions to forego these treatments, with the foreknowledge that death will be a
likely result, usually are based on a combination of patient wishes and patient best
interests. For many patients, a decision to forego life-sustaining treatments is a first
step for entry into a hospice program or a hospice mode of care. Although there are
many myths about whether foregoing life-sustaining treatments are ethically justi-
fied and legally permitted (Meisel et al. 2000), a general ethical and legal consensus
exists, especially for terminally ill patients, that life-sustaining treatments can be
foregone so that a more “natural death” can occur.
Comfort Care That Could Hasten Death
Most dying patients wish to spend their last days in as little pain as possible. For
cancer patients with advanced and progressive disease, the need for symptom con-
trol and analgesia can increase as their cancer progresses or becomes metastatic.
Since some pain medications in higher doses (e.g., morphine) have the possibil-
ity of occasionally (or only even rarely, Fohr 1998) hastening death or shortening
life through the suppression of respiration, some healthcare professionals, patients,
and caregivers may be reluctant to provide aggressive pain management using these
medications. For persons who oppose euthanasia (defined and described below) on
ethical grounds or who fear legal repercussions for even the appearance of euthana-
sia through the administration of high doses of morphine, a conflict of duties and an
ethical dilemma can arise: How is adequate comfort and pain relief for dying patients
provided while not crossing an ethical, moral, and legal boundary by directly causing
patients’ deaths?
In contemporary bioethics, the principle of double effect has emerged as an ethical
explanation and justification for providing adequate palliation for dying patients. The
principle of double effect states that an action with multiple possible effects, good and
bad, is morally permitted if the action: (a) is not in itself immoral, (b) is undertaken
only with the intention of achieving the possible good effects, without intending the
possible bad effects even though they may be foreseen, (c) does not bring about the
possible good effect by means of the possible bad effect, and (d) is undertaken for a
proportionally grave reason. As Sulmasy and Pelligrino (1999) note, “Treating dying
patients in pain with appropriate doses of morphine is generally done in a manner
that satisfies the criteria of double effect.” They explain:
The use of morphine (1) is not itself immoral; (2) it is undertaken only with the intention of
relieving pain, not of causing death through respiratory depression; (3) morphine does not
relieve pain only if it first kills the patient; and (4) the relief of pain is a proportionally grave
reason for accepting the risk of hastening death. (p. 545)
The principle of double effect is not without its detractors (Quill et al. 1997). A
central criterion of the principle is that the bad effect or consequence of the action
is foreseen, but unintended. Human intentions for a single act can be multiple, am-
biguous, and unclear, and even contradictory. The principle of double effect assumes
almost a clearly purposeful and single-minded intention. Furthermore, in many other
spheres of life, including civil and criminal law, people are held accountable for all
reasonably foreseeable consequences of their actions, not just the intended conse-
quences (e.g., the death of a pedestrian hit by an automobile driven by someone under
the influence of alcohol). Why should physicians and clinicians be exempted from a
similar expectation and responsibility for foreseen but unintended consequences of
their actions?
Despite these criticisms, the principle of double effect remains a recognized ethical
justification for providing adequate palliation that could hasten death. On a practical
level, physicians and other clinicians should administer palliative medications only
in response to patients’ manifestations (or reasonably anticipated manifestations) of
symptoms of pain and distress. Documentation in patients’ medical records should
include not only the medications prescribed and administered, but also the symptoms
being palliated.
Palliative Sedation
An additional and similar application of the principle of double effect is the occa-
sional practice of palliative sedation (Rousseau 2004), which is sometimes called
terminal sedation (Quill et al. 2000). In rare instances, the only recourse for treating
intractable pain and discomfort is to sedate a patient to unconsciousness. Palliative
sedation, while providing comfort, prevents patients from interacting with family
members, caregivers, and healthcare professionals, and from taking food and drink
by mouth. These burdens and negative consequences may be acceptable to patients
in exchange for the comfort and relief that palliative sedation will bring. Palliative
sedation will, therefore, have stronger ethical justification when the patient’s or sur-
rogate’s informed consent has been obtained. Even though palliative sedation could
hasten the dying of patients, it can be justified through the principle of double effect
as long as it is used with the intention of palliating and controlling intractable signs
and symptoms of pain and discomfort.
Physician-Assisted Suicide
Primarily because of an emphasis on patients’ autonomy and their right to control

both their living and dying, proposals have emerged to allow physicians to assist in
the suicide of terminally ill patients. Under this social policy proposal, physicians
would be permitted to both prescribe medications (e.g., pentobarbital) and provide
information so that patients could kill themselves. Ultimately, the actions proposed
would remain suicide (i.e., self-killing), but they would be carried out with the means
and knowledge provided by physicians.
Arguments and reasons for opposing physician-assisted suicide include fears that
vulnerable populations (e.g., the elderly, indigent, minorities, those coping with
physical or mental disabilities) will be coerced by social policy or expectations to
take their own lives. They also have concerns that a “license to kill” will have negative
effects on the medical profession; and there will be conflicts of interest by family
members and caregivers, who frequently shoulder the burdens of caring for the
terminally ill. Those who oppose physician-assisted suicide also worry that a right
to die could become a duty to die (Foley and Hendin 2002). Arguments in favor of
physician-assisted suicide, and that it is a necessary component of excellent hospice
and palliative care, include patient autonomy and control, relief of pain and suffering,
nonabandonment of patients in intractable pain, and a wider view of human suffering
that can be unendurable and beyond relief (Quill and Battin 2004).
Currently, in the United States, physician-assisted suicide is clearly legal only in
the state of Oregon where the majority of voters, by referendum, have supported a
Death with Dignity Act in both 1994 and 1997. To request from a physician a pre-
scription for lethal medications, the Oregon Death with Dignity Act requires that a
patient must be: (a) 18 years of age or older; (b) a resident of Oregon; (c) have deci-
sional capacity; (d) be diagnosed with a terminal illness that will lead to death within
6 months and that the diagnosis has been confirmed by the prescribing physician and
a consulting physician; (e) must make two oral requests to the physician, separated
by 15 days; (f) provide a written request to the physician, signed in the presence of
two witnesses; (g) be referred for a psychological examination if the patient’s judg-
ment is believed to be impaired by a psychiatric or psychological disorder; (h) be
informed about feasible alternatives (e.g., hospice care); and (i) be requested, but not
required, to notify next of kin about the prescription request (Oregon Department of
Human Services 2005). From 1998 to 2004, 208 citizens of Oregon (approximately
9.9 per 10,000 total deaths) have used physician-assisted suicide to end their lives.
Euthanasia
The word “euthanasia” literally means “a good death,” and is used usually to refer to
“mercy killing,” i.e., the intentional and direct killing of another person, motivated
by the desire to end the person’s pain and suffering. Euthanasia can and should be
distinguished from physician-assisted suicide in view of who does the killing. For
euthanasia, the doer of the deed is someone else; for physician-assisted suicide,
the doer is person or patient, with assistance of information and medication from a
physician. Euthanasia can be voluntary (i.e., in accord with the patient’s expressed
wishes), involuntary (i.e., a patient did not request it, but was capable of doing so),
or nonvoluntary (a patient is not capable of requesting it). Arguments or reasons for
and against euthanasia are similar to those expressed in the debate about physician-
assisted suicide.
From the point of view of public policy, euthanasia is legal only in Holland and
nowhere else in the world. For a nine-month period in 1996–1997, euthanasia was
a legal medical treatment within the Northern Territory of Australia where two men
and two women died making use of this legislation, while three others attempted
to, but died from other causes (Kissane 2002). Although the formal legalization of
euthanasia in Holland did not occur until 2001, since the mid-1980s, there have
been consensus guidelines permitting euthanasia that were supported by the Dutch
courts, the Royal Dutch Medical Association, the Ministry of Justice, and the Dutch
Health Council (Hendin 2002). The guidelines are similar to those noted above for
physician-assisted suicide in Oregon and include a voluntary, well-informed, and
well-considered request by the patient; intolerable and intractable pain and suffer-
ing; formal consultation with a second physician; and physicians reporting specific
acts of euthanasia to designated medical and legal authorities. In 1995, there were
approximately 3,000 deaths in Holland as a result of euthanasia. The total deaths in
Holland in 1995 were approximately 135,000 (Groenewoud et al. 2000). Pertaining
to the Dutch practice, concerns have been raised regarding clinical and technical
problems (e.g., difficulty inserting an IV line, myoclonus, longer-than-expected in-
tervals between administration of medications and death), and that in some cases
“voluntariness is compromised, alternatives are not presented, and the criterion of
unrelievable suffering is bypassed” (Groenewoud et al.).
Guidelines for Caregivers: What Is Needed
Three of the key decisions made at the end of life have clear and growing ethical, le-
gal, and societal support. The first set of decisions involves foregoing life-sustaining
treatment, providing comfort care that could hasten death, or dispensing palliative
sedation. The other two decisions, allowing physician-assisted suicide and euthana-
sia, are much more controversial and continue to be debated, especially whether
social policy and medical practice should be changed to allow them.
When considering the decision to forego life-sustaining treatment, specific and
practical concerns and dilemmas arise regarding decisions to withhold CPR and the
accompanying medical order of “do-not-resuscitate” (DNR). In general, the lay pub-
lic is not well informed about realistic outcomes from CPR, especially for cancer
patients with metastatic disease. One retrospective, inpatient CPR outcome study,
for example, differentiated sudden, unexpected cardiac arrests versus anticipated
cardiac arrests. During a five-year period that was studied (1993–1997), of the 171
cancer patients who experienced an anticipated cardiac arrest, no patients survived to
hospital discharge (Ewer et al. 2001). The patients and caregivers need to understand
that CPR is an intervention that is most effective after sudden and unexpected car-
diac arrests secondary to such events as drowning, electrocution, suffocation, drug
intoxication, or automobile accidents. CPR is generally not an effective interven-
tion in the setting of advanced cancer and multiorgan failure, and rarely staves off
death for more than a short period of time. Furthermore, although a patient has a
right to refuse CPR, respect for the patient autonomy does not generate a right to
demand CPR when it is medically inappropriate. The principles of nonmalfeasance
and beneficence can “trump” patient or surrogate wishes in some clinical situations.
From an ethical perspective, healthcare professionals do not have an obligation to
provide treatments (including those that are life-sustaining) that are judged to be
medically inappropriate, ineffective, or overly harmful. Furthermore, as observed by
Reid and Jeffrey (2002), “it is generally accepted that doctors have no legal obligation
to offer any treatment, which in their professional judgment will not be beneficial.”
Caregivers should be attentive to and find appropriate ways to respond when dying
patients raise any of these major decision areas. A training program called “Educa-
tion in Palliative and End-of-Life Care” (EPEC 1999), originally developed by the
American Medical Association, can provide guidance for appropriate responses.
The EPEC program consists of multiple educational modules on various aspects
of end-of-life care, including Module 5, which focuses on physician-assisted suicide.
This module presents and explains a six-step protocol for responding to requests for
physician-assisted suicide and euthanasia. The six steps are:
1. Clarify the request by providing an immediate compassionate response, using
open-ended questions, and inquiring about suicidal thoughts and plans.
2. Determine the underlying causes of the request by exploring with the patient the
possible dimensions of suffering (psychological, social, physical, spiritual), with
a particular focus on fears for the future, and depression and anxiety.
3. Affirm a commitment to care for the patient by listening, acknowledging fears and
feelings, and assuring the patient of a commitment to help find solutions together.
4. Address root causes of the request by discussing with the patient goals and
preferences for the end of life, and explaining palliative care approaches and
services.
5. Educate the patient and discuss legal alternatives to physician-assisted suicide
and euthanasia such as refusal of treatments, withholding and withdrawal of
life-sustaining treatments, comfort care, and palliative sedation.
6. Consult with others by seeking support from trusted others such as nurses, social
workers, and physicians who have experience in caring for dying patients.
These guidelines are founded on caregivers’ willingness and ability to listen, probe
for underlying issues, and commit to being present with the patient during the dying
process.
Conflicts and Conflict Resolution: What Is Known
Respect for patients’ autonomy includes honoring their wishes to the extent possible
and when medically appropriate. Promoting patients’ best interests includes making
reasonable judgments about the burdens and benefits of treatments, and then acting
accordingly. In most clinical situations, when patients, family members, caregivers,
and the involved healthcare professionals are able to agree about the goals of treat-
ment, and corresponding diagnostic procedures can be given, appropriate treatment
plans may be developed.
A useful model for understanding the matrix of relationships in which these
choices and decisions are made is outlined by Loscalzo and Zabora (1995). Basi-
cally, these stakeholders in the decisions (patients, family members, and caregivers)
exist as interconnected spheres in equilibrium such that if there is stress on one party,
the others will try to compensate. The greater a threat is to the patient, the more
dynamic can be the response from family and caregivers, as they try to maintain the
equilibrium. Furthermore, “the greater the shared sense of threat and disruption to
the integrity of the family system, the more likely patients and families will act in
unison toward resolution of identified problems.” This model and matrix can apply
to the involved healthcare professionals as well. The more they are in agreement with
the patient and family, the more easily they will move toward a unified goal, and
help the patient and family move in that same direction. However, to the extent that
any one of the involved persons has a different perspective or a different expectation,
moving toward a common goal will be more difficult. When family responses are not
those expected by healthcare personnel, tension may be generated between family
members and healthcare providers at a time when clarity and effective interaction
are essential. If the staff is not in agreement with the family, then power struggles
can take over, leading to fear, mistrust, and conflicts. Pertaining to staff challenges,
Loscalzo and Zabora (1995) note:
Healthcare professionals practice in an extremely demanding environment. Although they are

prepared to function well within the context of intellectual challenges and multiple technical
and instrumental tasks, staff is seldom prepared for the psychological and emotional demands
of patients, families, and their own idiosyncratic responses. (pp. 241–242)
Healthcare professionals ignore the psychological and emotional demands of pa-

tients, family members, and caregivers with significant peril because without
understanding the equilibrium dynamic and assisting the stakeholders in address-
ing those issues, consensus on goals usually cannot be reached and conflicts will
arise.
Reasons and Sources of Conflict
Conflicts among patients, families, caregivers, and healthcare professionals occur

for a variety of reasons, but especially when there are breakdowns in communication
or ethical dilemmas arise. Abbott et al. (2001) found that conflict between Inten-
sive Care Unit (ICU) staff and families occurred in about 46% of cases, as reported
by families whose loved ones did not receive life-sustaining treatment. Sixty-three
percent of family members had spoken previously with the patients about their end-
of-life treatment preferences, which may have lessened the burden of the treatment
decision. Conflicts primarily centered on communication and perceived unprofes-
sional or disrespectful behaviors by physicians and nurses, but conflicts were also
reported concerning decisions to withdraw or withhold life-sustaining treatments,
pain control, perception of quality of care, and quality of life of the patients. Dis-
cussions and decisions about withdrawing or withholding treatment were rarely an
isolated source of conflict.
Conflicts may be more likely in settings of patients with agitated delirium, poor
symptom control, a history of substance abuse or psychiatric illness, a family previ-
ously and significantly involved in patient care, or a history of intrafamilial conflict.
Also, utilization of coping mechanisms such as displacement (transfer of emotional
concerns about one issue that is too difficult to cope with, to another that is more toler-
able), denial (unconscious repudiation of all or one aspect of reality), and distancing
(conscious postponing, or focusing on all or one aspect of reality) may contribute
to or aggravate conflicts (Dunkell-Schetter et al. 1992). Ferrell (2001) found that
anxiety is prevalent in caregivers of dying patients; anxiety was present in 32% of
caregivers at the time their loved ones were referred to a home care team, and per-
sisted in 26% of caregivers during the last week of their loved ones’ lives (Ferrell
2001). As Loscalzo and Zabora (1995) have observed when patients are dying of
cancer:
In these circumstances, anxiety and confusion should be understood as an expression of
overwhelming nature of this experience for family caregivers who are highly uncertain
concerning their ability to manage. Significant anxiety will disrupt any attempt for effective
communication because family members may be unable to comprehend or retain complex
or technical information. . . . Disruption by families is a communication, a disguised and
confused plea for help, which is best handled by attending to the underlying concerns of the
family and not the distractions, such as imperfections in the staff. (p. 233)
Sources of conflicts can be: (a) honest disagreements about what is best for patients
(e.g., family believes that a terminally ill cancer patient will improve by placement
of a feeding tube while the medical team asserts that administration of hyperali-
mentation will increase patient’s discomfort); (b) pathological conflicts related to
relational dysfunctions within families or healthcare medical teams; or (c) a combi-
nation of both. Factors predisposing situations to pathological conflicts include high
stress levels for family (either internal, such as guilt, or external, such as financial
problems), distrust of the healthcare system, poor coping skills, and the “Daughter
from California” syndrome (i.e., a family member who is emotionally and at times
geographically distant from the patient, and who, in a time of crisis for the patient,
strongly inserts opinions or demands into the situation, Molley et al. 1991). Staff
characteristics that may predispose them to conflicts include a fractionated team,
team style, personal stress, and maladaptive behaviors.
More complex and potentially explosive situations can arise when patients lack
decisional capacity. In such situations, family members and caregivers are usually
asked to provide substituted judgments (i.e., to make decisions in accord with the
“voice” and values of the patient). However, the preferences and values of these deci-
sion makers may conflict with those of each other and with those of the patient. This
may be especially true if patients, when competent, did not engage in advance care
planning or execute advance directives applicable to their current medical situations.
A Five-Step Model for Conflict Resolution: What Is Needed
Karlawish et al. (1999) describe a consensus-based, conflict-resolution strategy that

keeps what is known about patient wishes and values in the foreground, but also
expects guidance from physicians and other healthcare professionals, and elicits
input from family members and caregivers who have knowledge about the patient.
Their five-step process has application for many healthcare conflicts, not only for
those in which the patient lacks decisional capacity:
1. Identify the main participants in the decision-making. Participants should include
a Medical Power of Attorney if one has been designated and is needed, as well
as close family members and caregivers. The most important criterion for who
should be included is knowledge about the patient. It should also be noted that
“the legally mandated and the ethically appropriate person are not always the
same (e.g., an adult daughter may be a more ethically appropriate surrogate than
an estranged wife; a homosexual partner may be a better choice than a parent)”
(Faber-Langendoen and Lanken 2001).
2. Allow participants to narrate how the patient has come to this stage of illness.
A useful technique is to ask family members and caregivers to share their per-
spectives about the patient’s illness up to this point. Sharing narratives can have
multiple benefits, including helping to clarify differences in beliefs and under-
standings of the current disease state, prognosis, quality of life, and previously
stated values. This process allows the physician and other professionals to un-
derstand the relationships within the family; it also helps the healthcare team to
understand the “whole patient” and not only the clinical and physiological factors
of the case.
3. Teach the decision makers about the expected clinical course of the patient’s dis-
ease. This step should include a discussion about the general goals of treatment
and care, and descriptions of how the illness will impact activities of daily living.
Explanations about additional medical and nursing needs as well as the avail-
ability of palliative care and symptom management, coupled with assurances of
nonabandonment, should always be included. The family’s perception that they
are being well informed can be a major determinant of their level of satisfaction
(Kristajanson 1989).
4. Advocate for the patient’s quality of life and dignity. In addition to asserting that
all participants will want to look back on this chapter of the patient’s life and know
confidently that the patient was treated with dignity and respect, the physician
and other healthcare team members should explore concretely what “being treated
with dignity and respect” means to the family and other caregivers.
5. Provide guidance on the basis of existing data and clinical experience. Here,
healthcare team members, patients (if able to participate), and family members
and caregivers need to combine their various areas of expertise, i.e., clinical and
medical knowledge (especially about likely outcomes), and patient wishes and
preferences as known. Ultimately, the burdens and benefits of identified options
must be weighed in the light of treatment goals and the patient’s dignity and
quality of life.
If this five-step strategy fails to build a consensus about a treatment plan, Karlawish
et al. (1999) recommend the following: (a) postpone the decision-making and ask
participants to take time to think about and discuss key issues; (b) understand and
separate from each person’s perspective the goals of treatment and the treatment
choices to achieve these goals; (c) identify new solutions (e.g., a time-limited trial
rather than an all-or-nothing solution); (d) avoid power struggles or personalizing the
conflict; (e) call in a third party to help negotiate or mediate (e.g., ethics consultant
(Aulisio et al. 2003), trusted clergy, palliative care consultant); and (f) do not violate
fundamental values of the patient, family, caregivers, physician, or other clinicians.
If it is not possible to arrive at a consensus, the healthcare team must ultimately
decide whether to make concessions or proceed without unanimity. If the issue is
small and the action would not harm a patient, concessions might be appropriate.
Truog et al. (2001) cite the example of a patient in the final stages of dying and
exhibiting agonal respirations. While this is not likely a cause of distress to the
patient, it can be very stressful for family members and caregivers. The physician
could insist that additional medications are unnecessary, but he could also accede to
a family request by providing a small amount of sedative or opioid to decrease the
appearance of discomfort.
Caregivers’ Experiences of Illness: What Is Known and Needed
The tremendous emotional demands associated with the experience of caring for a
loved one approaching the end of life are not easily understood by those who have
not experienced them. Bearing witness to the illness, dying, and death of a loved one
is a profoundly painful experience. Horowitz and Lanes (1992) have noted:
Being witness has a peculiar property of being separate from the action, yet at the same time
fully engaged. There is sympathy and empathy, resentment and compassion. . . . Often the
patient’s pain or distress is indirectly felt, transformed, vividly imagined, or distorted by
thinking it is much worse than it really is. Witnesses are afraid for the patient and themselves
as they, too, face change, while wishing for a return to normalcy. (pp. 13–14)
Furthermore, family members and caregivers can have their own unique ethical
dilemmas and decisions, especially when providing home care. For example, family
caregivers report dilemmas related to their involvement when assessing patients’
pain and participating in their loved ones’ pain management (Ferrell 2001; Johnston-
Taylor et al. 1993). They face difficult decisions on a daily basis regarding which
medicine to give, how much, and when to give analgesics. Family members struggle
with titration: when to increase the dose, how to balance relief with side effects, fear
of overdosing, and fear of addiction. Family caregivers feel responsible for unrelieved
pain and often have difficulty weighing possible benefits of procedures against the
anticipated pain. They feel responsible for communicating with healthcare providers,
with balancing goals of comfort versus care, and with causing pain while providing
care. They feel responsible for pain relief at home and often report spiritual and
existential conflicts and a fear of the future.
Among the needs of family members of dying ICU patients, several directly
pertain to the ethical decision-making process (Truog et al. 2001). These include the
need to be assured of the patient’s comfort, to be made fully aware of the patient’s
condition, to be informed of impending death, to ventilate emotions, to be accepted,
and to be supported and comforted by health professionals. Family members may
neglect their own physical and emotional needs to the detriment of their ability to
participate in decision-making and care.
Simple actions can begin to address many caregiver needs. Professional caregivers
can validate how difficult the situation is for the caregiver; express understanding
and sympathy; maintain open and ongoing communication; explain the physiologic
process of dying in concrete terms, while avoiding medical jargon; provide reassur-
ance that the healthcare team is focused on the patient’s comfort; routinely assess
the patient’s signs and symptoms of discomfort; and assure patients and caregivers
that pain-relieving medications and interventions are continually available. It may
also help to anticipate, ask, and answer questions that the family appears to be afraid
or unable to verbalize, reassuring caregivers about the decisions already reached,
and emphasizing that the responsibility for these decisions is shared between the
family and the healthcare team. Relatedly, professional caregivers can provide addi-
tional support by making referrals to other members of the healthcare team, such as
chaplains, psychologists, and social workers who can also be of great practical and
emotional help to the caregivers.
Conclusion
The goal of this chapter has been to create an ethical framework that supports quality
care of cancer patients and addresses issues faced by their caregivers. Major elements
of this framework include guiding ethical principles, standards for decision-making,
advance care planning, decisions at the end of life, and conflict-resolution strategies.
Healthcare professionals working with and supporting caregivers—and caregivers
themselves—should find within this framework parameters and guidance for identi-
fying, analyzing, addressing, and resolving the many and varied ethical issues that
arise in cancer care.
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Part IV
Conclusions
Chapter 16
Cancer and Caregiving: Changed Lives
and the Future of Cancer Care
Ronda C. Talley, Ruth McCorkle and Walter F. Baile
Cancer is the plague of our generation. The leading cause of death worldwide, cancer
accounted for 7.6 million deaths or 13% of all deaths in 2008 (World Health Organi-
zation (WHO) 2011). Cancer is a leading cause of death worldwide and accounted
for 7.6 million deaths (around 13% of all deaths). In 2012, 577,190 U.S. citizens
or 23.3% of all deaths in the United States were attributed to this deadly, invasive
disease (American Cancer Society (ACS) 2012; National Center on Health Statistics
2010). In their 2010 (ACS 2012) report, ACS projected that 1,529,560 new cancer
cases would be diagnosed that year. For each of those numbers, a team of professional
caregivers (physicians, nurses, hospice workers, aides, technicians, etc.) and from
one to dozens of family caregivers provide life-sustaining support to the individual
with cancer (Nijboer et al. 1998, 1999). With this domino effect, the numbers of
patients and family caregivers, plus the numbers of impacted professional caregivers
could be added to determine the pervasive impact of cancer on the states and the
world.
Federal Support in the War Against Cancer
While progress has been made in the fight against cancer, advancements have been
painfully slow. In 1971, President Richard Nixon launched a “war against cancer”
in his State of the Union address:
R. C. Talley ()
Western Kentucky University, 1906 College Heights Boulevard, GRH 3023, Bowling Green, KY
42101-3576, USA
R. McCorkle
Yale University School of Nursing, 100 Church Street South, New Haven, CT 06536-0740, USA
W. F. Baile
University of Texas M.D. Anderson Cancer Center, Houston, TX 77230-1402, USA

316 R. C. Talley et al.
I will also ask for an appropriation of an extra $ 100 million to launch an intensive campaign
to find a cure for cancer, and I will ask later for whatever additional funds can effectively
be used. The time has come in America when the same kind of concentrated effort that split
the atom and took man to the moon should be turned toward conquering this dread disease.
Let us make a total national commitment to achieve this goal.
Despite the President’s proclamation, funding for cancer research has remained a
challenge. As recently as 2005, Andrew C. von Eschenbach, NCI director, pro-
nounced “Our challenge goal to the nation. . . Eliminate the suffering and death due
to cancer by 2015” (NCI 2005). However, federal funding for cancer research has re-
mained level at approximately $ 4.9 billion from 2005 to 2010 (NCI 2011b) and while
cancer research has yielded remarkable advancements, these accomplishments have
been made against a backdrop of less than adequate funding to accomplish Director
von Eschenback’s laudable goal. More recently, NCI reports: “Cancer research today,
especially on the frontiers America’s cancer researchers are renowned for spearhead-
ing, requires investment at a scale unimaginable 40 years ago” (NCI 2011a, p. 4).
Yet, again, at a time of economic uncertainty caused by the national deficit and debt,
it appears doubtful that the full gains possible in cancer research will be made over
the immediate years to come.
Cancer is Personal
However, to the patients and those who care for them, a single incident of cancer is
one too many. One incident of cancer can destroy lives and families. If you are the
one diagnosed with cancer, your world view changes forever. If you are the person
who loves them, your life will never be the same. Unfortunately, cancer is deadly
in too many cases and for each death, we know the life lost is irreplaceable and the
love lost is devastating. And, for the physicians, the life lost is considered a failure.
While prevention and early intervention are helping to reduce the numbers of
individuals who die from cancer, there are still far too many fatalities from this
horrific disease. The following scenarios depict cancer’s far-reaching effect:
When Dad told Mom that he had cancer, her world crumbled. He tried to be strong for her,
but it was not enough. Why, she thought, hadn’t his doctor done more? For years, he had
been told by the physician that he just had stomach problems and to take over-the-counter
medicine. When he finally talked the physician into giving him a test, the test was read as
“inconclusive,” but Dad was told it had shown nothing wrong. I told him it didn’t matter
what the test said, he was still sick and needed help. I tried to get him to go to my doctor
for a second opinion. His loyalty to his long-time physician kept him from asking another
physician for help. Finally, after the physician had a colonoscopy for himself, he ordered
one for Dad. Cancer was found.
At the time of surgery, the colon cancer has metastasized to one lymph node. He had every
treatment available to him, radiation and chemotherapy, so many kinds that we lost count.
He lost weight, lost his hair, had cracks on his feet, was nauseated and tired, and couldn’t
eat. We counted calories of all he ate each day to try to get him to eat more. We bought nuts
and set them by his chair so he could get calories and protein at the same time. We did, my
mother did, everything one human being could do for another.
16 Cancer and Caregiving: Changed Lives and the Future of Cancer Care 317
Finally, the treatments stopped working. Dad lived another year, and after Christmas, one
year after Mom had lost her own father, he died. There was no bottom to the pain. Mom had
almost killed herself taking care of Dad, and she was sick. For me, there was no way I could
work now.
When I look back on this five years later, I am acutely aware of the pain that endures. While
the passage of time does help, the loss of my father’s living presence is a forever thing. I do
believe in God and the hereafter, and that gives me hope that I will be with him again in the
future. Yet, how much I would give to have him here, now, in the flesh, to share the grand
events and small, daily routines of our family?
This is just one story of many that could be told about the toll cancer takes on families.
Of particular concern is the caregiver, the loved one who is left behind to grieve, get
financial and personal affairs in order, refocus on their own health, and begin to
live a new life without the person they love. Completing tasks that are basically
logistical ones, such as finances and housekeeping, can give the caregiver a sense of
immediate purpose and some closure as they move through the mourning process.
However, when it comes to living life anew without your life partner or loved one,
no milestones or guidance fit all individuals left behind to cope with the incredible
loss. We all, in our own way, must struggle with a new reality of life that is forever
changed.
The previous account chronicles a family’s multiple year struggle with a father’s
cancer. The next story tells the story of a hidden cancer that reoccurs in a man 56
years of age, then produces immediate, devastating results:
I loved him. He was the love of my life.
It looked like a mole under his chin. I told him I didn’t like the way it looked. When he went
to see the doctor, he was told it was melanoma. Surgery followed and the doctors said, “All
clear.” It had been dealt with quickly. We celebrated and went on with our lives.
Thirteen years later, I received a call. “Honey, I have cancer,” he said. “What!?!,” I exclaimed,
“NO! We took care of that years ago.” He went on to tell me that the cancer had returned
even though we couldn’t see anything on the surface of his skin. It turned out that the weight
loss and night sweats were our clues. “Oh, no, oh, no, the cancer is back,” I wailed.
What followed broke my heart. My loved one started on a series on tests and doctors’ visits
that lasted for months, and then, finally, he had a 16 hour surgery to remove the lymph nodes
in his neck. A few weeks later, radiation was begun and took its awful toll. He couldn’t
eat and couldn’t sleep; he was in increasing pain. The radiation was too much. He told the
radiologist that he wanted to stop treatment, but the doctor talked to him and he continued.
He was 98 pounds when he finished radiation, with radiation burns on the inside and outside
of his throat. He was almost too weak to hug me.
Two weeks later, I convinced him to make the doctor check him into the hospital for nutrition.
I was scared; he couldn’t eat and threw up when he tried. I remember it was right before
Christmas. In the hospital, he had every test you can imagine, but no treatment. The tests
made him weaker, draining what was left of his energy. Nine days after admission, he died.
Despite the deadly outcome recalled in the previous two cases, people do survive
cancer and thrive. The next first-person account tells this story:
It’s Thanksgiving, my favorite holiday of the year. It’s a day of reflection and a time to
enjoy family and friends without all the hustle and bustle associated with the end of the year
holidays. Even the weather cooperated today: in shirtsleeves, under sunny, warm, clear blue
skies, we were able to rake the last of the leaves off the grass and plant tulip bulbs in the
front garden. Two years ago at Thanksgiving we already had a blanket of snow! Last year,
well, that is altogether a different story. By Thanksgiving last year, I had completed 12 of
35 radiation treatments for cancer and I was feeling awful.
The cancer saga started seven months earlier in April. While riding my bicycle home from
work one day I discovered a tiny hard spot deep in my left thigh muscle. There was no
discoloration, swelling, or pain, just a little hard spot that would occasionally rub against my
bicycle seat. In fact, it was so small and seemingly innocuous, that I ignored it for almost
three weeks. Then within a period of a few days, it grew from the size of a pencil eraser to
almost half the size of my hand. That was the end of my doctor avoidance! Four days after first
showing this “hard spot” to my primary care physician, I met with my cancer team, which still
tracks me today, nineteen months later: an oncologist, a radiologist, a surgeon and support
nurses. An MRI and biopsy confirmed that I had a high-grade malignant fibrous histiocytoma
sarcoma subtype myxoid. This is a fairly rare cancer compared with breast, lung, colon, or
prostate cancers. However, it is very fast growing and deadly if not treated quickly. Within
days, I had a dual access port surgically installed in my chest for chemotherapy and several
days later, started the first of four three-week rounds of chemo. These were followed by
surgery in August to remove the tumor, which had now grown to be larger than my hand,
two more rounds of chemo for good luck, and 35 sessions of radiation. Eight months of
being poked, cut, poisoned, and radiated. Not fun.
The good news is I returned to teaching (at the university) full-time in January, two weeks
after finishing radiation. I resumed bicycling in early February, got my swimming back up
to a mile a day by April, and am cancer free almost a year after finishing treatments. Aside
from a lingering fatigue, I feel fine. I’m glad to be above ground and actively engaged in
life.
There are a number of ironies about this whole affair. One is that the cancer never caused any
pain. (I wish I could say the same of the treatments.) Another is that two suspected causes
of this cancer are exposures to toxic chemicals (e.g., dioxin) or to high doses of radiation.
Well, I was exposed to more lethal chemicals during one session of chemo and more rads
(grays) in one radiation treatment than I received during the entire prior 60 years of my life!
Fighting fire with fire seems primitive, but it is the state-of-the-art today. A third is that the
emotional toll on my family was greater than on me. (Perhaps I wasn’t the perfect patient I
thought I was.) The fourth irony is that I have always taken care of myself. I never smoked
or used drugs, I exercise regularly (bicycle year-round, swim 5–7 miles a week, use stairs
instead of elevators, etc.), and I was raised by a health-conscious mother who focused on
organic foods. The only risk factor I am aware of is I grew up in a city well-known for its
air and ground pollution from chemical manufacturing plants.
Lucky? You bet I am. Thankful? You bet I am. Firstly, I live within ten minutes of a
world-class university hospital, one of the few in the country that has a sarcoma center.
My medical care has been first-rate, delivered by professionals who really care about the
individual. Secondly, I have excellent health insurance. Bankrupting my family or worrying
about paying for my expensive treatment was not a concern for me, unlike for many of the
people I met last year. Thirdly, I didn’t lose my job. My colleagues and administrators were
incredibly accommodating to give me time to heal and adjust. Fourthly, for my entire life, I
have been blessed with a supportive, loving family and wonderful friends. The awareness of
this gift has never been far from my daily consciousness, but it became front and central last
year. Technically, what I received is called Care Giving, but I call it Love Giving. Family
members, neighbors, colleagues, past students, current friends, and even high school friends
I don’t normally communicate with between five-year reunions lent their support through
prayers, e-mails, letters, visits, prepared meals, freshly cut flowers, chauffeuring to the
hospital, jokes, and just plain vanilla good vibrations. One of my sisters and a dear friend of
mine each gave up a week of their lives to live with us when I was particularly sick to lend
a hand to my wife who was supporting me 24/7. All of this is incredible!! I’m the luckiest
guy in the world!
Thanksgiving Day is over. It’s time to wrap up this epistle. But, it certainly isn’t time to stop
giving thanks. John Donne’s quote sums this experience for me: No man is an island, entire
of itself; every man is a piece of the continent, a part of the main; if a clod be washed away
by the sea, Europe is the less. . . any man’s death diminishes me, because I am involved in
mankind. Brian (personal communication, January 17, 2007)
These three accounts tell different stories of the way cancer manifests and impacts
the diagnosed individual and their families. While the pathways to and through the
disease are different, there is no question that cancer takes an enormous physical,
emotional, financial, and spiritual toll on both care recipients and caregivers.
Authors’ Reflections
In this book, McCorkle and Given (Chap. 3) offer a number of suggestions for the
future. Since we know that factors such as disease stage, patient’s age, gender and
emotional adjustment, coping and social support and other factors can affect distress
levels in caregivers, clinical interventions can be targeted to cancer caregivers who are
at high risk for physical and emotional distress. They note that primary care providers
and other health care professionals need training and education in the assessment
of patients’ caregiving needs as well as caregivers’ capacity to provide care. Policy
recommendations include: (a) establishing advocacy groups to champion the needs
of family caregivers; (b) developing policy initiatives that address financial support
and legislative action at the state and federal level; and (c) establishing community
initiatives, including establishment of local support groups, respite programs, and
mental health services for caregivers.
Wilkie (Chap. 2) contributes to the dialogue by stating that an important goal for
cancer care is eradication of disparities, both for patients and caregivers. This has
implications for future research, practice, education, and policy. Research must be
specifically targeted to investigate cancer family caregivers. Family support services
must be tailored to specific needs of ethnic minority groups and accommodate their
various language and cultural needs. Policy initiatives should explore creative initia-
tives to address disparities in cancer care. There is also a great need for multicultural
education training among health care professionals.
Baile et al. (Chap. 6) introduced a strategy for establishing an alliance, which they
call PERKS: determining patient Preferences for caregiver involvement; Engaging
the caregiver; establishing caregiver Role and Readiness; providing Knowledge and
information; and providing Support and Strategies. In each of these areas, emphasis
is placed on providing ongoing, dynamic assessment of caregiver and patient needs
and considering the individual needs and quality of life of the caregiver. Health care
team members can take an active role in identifying patients’ needs and instructing
family members in implementation of patient care activities.
Bergamini and Hendrickson (Chap. 7) noted that the number of youth caring for
older family members with cancer is growing, and although the tasks assigned to these
youth may not involve direct patient care, there can still be a significant burden placed
on these children and youth, which can impact their emotional status, education,
and social interactions. Schools are typically supportive of these students; however,
there are no formal protections in place for youth caregivers through methods such as
Individualized Education Plans or Section 504 health plans, which are needed. (For
more information on children and caregiving, see forthcoming book in this series on
Intergenerational Caregiving 2012).
Puchalski (Chap. 11) suggested that extensive educational program development
and research are needed in the area of providing spiritual support to caregivers while
Smith and Paulk (Chap. 15) discussed the difficult issues of withholding and with-
drawing life-sustaining treatment, comfort care that could hasten death, palliative
sedation, physician-assisted suicide, and euthanasia.
Baldwin (Chap. 12) defined the various areas of cost associated with cancer as
direct and indirect costs. These factors contribute to the difficulty in obtaining com-
prehensive care for cancer patients and their families. Kaufman et al. (Chap. 14)
noted that federal policy initiatives such as the Family Medical Leave Act allow
12 weeks of unpaid leave Stromborg (Chap. 13); however, many caregivers are ex-
cluded and other initiatives focus on caregivers of specific populations that do not
include cancer. National health care accreditation organizations also do not specifi-
cally address caregiver needs and this has forced states to take a larger proportion of
responsibility for addressing family caregiving needs.
Reasons for Hope
Despite the staggering statistics regarding cancer morbidity and mortality, there are
new reasons for hope. Prevention efforts are increasing. Early-detection campaigns
are increasing public awareness of the importance of identifying affected cells at
the start of their mutations from normal to cancerous. More people are emphasizing
prevention behaviors, while early diagnostics and treatment are helping others who
have existing disease. Therefore, individuals with cancer are generally surviving
longer. The American Cancer Society (2011) reports that the 5-year relative survival
rate for all cancers is increasing, up from 50% in 1975–1977 to 68% between 1999
and 2005.
Despite all the challenges faced by caregivers of individuals with cancer (Gilbar
and Ben-Zur 2002; Given et al. 2001), there are few who would say that the battle is
not worth the most ferocious fight possible. Despite all odds, the nation is advancing
in its efforts to fight this disease, even if the pace of advancement is not all that
we would wish. Public awareness is increasing and individuals appear to be taking
more personal responsibility for behaviors that are protective in avoiding cancer and
life-affirming when they are diagnosed. More attention is being given to the needs
and health of family and friend caregivers who stay by the sides of their loved ones
for days, months, and years as they fight to survive and thrive (Goodheart (Chap. 4);
Jacobs (Chap. 8); Raveis (Chap. 10)). Professional caregivers, such as doctors,
nurses, psychologists, and clergy, are increasingly recognizing that they need the
support of other care team members as they plan the best course of treatment possible
for their patients; they are also offering more thoughtful support for the family
members who are often responsible for implementing the care plan once the family
leaves the doctor’s office. And, very importantly, more cancer victims are becoming
cancer survivors and enjoying that precious extra time that early treatment and loving
care makes possible (Balducci and LaCoursiere (Chap. 9); Glajchen (Chap. 5);
Laubmeier et al. 2004).
Family caregivers make a difference in the quality of life of their loved ones
with cancer. Their thoughts, feelings, and preferences are important variables in the
care equation. For the best possible outcomes in cancer prevention, research, and
treatment, families must be considered deserving the attention of cancer researchers
who are working hard to find ways to help families survive and beat this disease.
One day, hopefully soon, scientists will find the elusive “cure” for cancer. That will
be a time when we can rejoice together that the pain of losing a loved one to this
dreaded disease will never touch another caregiver’s heart.
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get proposal for fiscal year 2007. Washington, DC: U.S. Department of Health and Human
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archives/nci_2007_plan.pdf.
National Cancer Institute. (2011a). Cancer: Changing the conversation: The nation’s investment in
cancer research, an annual plan and budget proposal for fiscal year 2012. Washington, DC:
U.S. Department of Health and Human Services. http://www.cancer.gov/PublishedContent/
Files/aboutnci/budget_planning_leg/plan-archives/nci_plan.pdf.
National Cancer Institute. (2011b). Fact sheet: Cancer research funding. http://www.cancer.gov/
cancertopics/factsheet/NCI/research-funding.
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for Disease Control and Prevention.
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3–13.
Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R., & Van Den Bos, G. A. M. (1999).
Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer,
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Index
A C
Adjuvant treatment, 236 Cachexia, 81
ADLs, 6, 165 California Caregiver Resource Center
Advance care planning, 293–295 (CRC), 275
Advocacy, 2, 9, 12, 14, 25, 56, 70, 87, 120, 140, Cancer, 1, 3, 7, 9, 13, 14, 21–23, 30, 39, 40,
156, 185, 266, 267, 280 48, 51, 67, 69, 70, 73, 74, 81, 83, 94,
African American, 10, 64, 66–69, 71, 72, 233 103, 105, 137, 139, 146, 147, 150, 152,
AIDS, 267, 268 162, 163, 175, 179, 180, 184, 188, 190,
Air hunger, 136 192, 206, 208–210, 232, 234, 235, 237,
Alzheimer’s disease, 9, 14, 66, 72, 167, 209, 238, 240, 241, 251, 257, 267, 278, 299,
210, 266, 281 315, 316
American Cancer Society (ACS), 70, 72, Cancer care
179, 238 burden of, 56, 63, 83, 84, 170, 173, 176,
Analgesics, 67, 308 182, 188, 237–239, 241, 242
Anger, 22, 49, 91, 111, 113, 151, 152, 165, Cancer diagnosis, 7, 21, 22, 24, 26–32, 39,
170, 201, 230 57, 81, 89, 104, 105, 107, 109, 110,
Anorexia, 81 132, 154, 180, 182, 184, 186, 219, 256,
Anxiety, 5, 11, 41, 49, 51, 68, 79, 81, 85–91, 259, 265
93, 105, 106, 110–112, 136, 137, 148, Cancer Information Test, 51
154, 169, 173, 180, 187, 201, 230, 236, Cancer patients
244, 294, 303, 305 stage III/IV disease, 232
Anxiety and depression, risk of, 68 Cancer screening, 72, 180, 183
AnxietyCheck for Caregivers, 277 Cancer therapies, 182, 186, 187, 191, 281
Arsenal, cancer vaccines, 183 Cancer trajectory, phase in, 21–23, 31, 33,
Asian Americans, 64, 68 34, 56
Cancer vaccines, see also Cancer therapies, 183
Cancer-causing agents, 183
B Cardiac arrest
Biopsy, 27, 180, 318 anticipated, see also CPR, 303
Bleeding, 86, 181 unexpected, see also CPR, 303
Blood transfusions, 215 Cardiopulmonary resuscitation (CPR), 259,
Bolster caregiver supports, 51 299, 303
Bone marrow therapy, 184 Cardiovascular disease, 5, 48, 201
Bone marrow transplantation, see also Bone Care receiver, 2, 40, 154
marrow therapy, 184 Caregiver Cancer Education Program
Breast cancer, 53, 54, 68, 89, 136, 153, 230, (CCEP), 51
235, 236, 318 Caregiver education, 130

DOI 10.1007/978-1-4614-3154-1, © Springer Science+Business Media, LLC 2012
324 Index
Caregivers, 2–4, 8, 9, 11, 13, 21, 47–50, 53, 57, D

69, 74, 80–90, 93, 94, 108, 111–113, Death-talk, 294
119, 129–131, 133, 134, 137, 140, 149, Dehospitalization, 185
151, 152, 163, 164, 168, 170, 172, 173, Depression, 5, 6, 11, 40, 41, 47, 49, 51, 52, 54,
175, 176, 179, 190, 191, 202–204, 57, 66, 68, 79, 81, 83–86, 88, 90, 91,
208–210, 221, 237, 238, 241, 242, 251, 93, 95, 111, 112, 148–150, 154, 165,
252, 255, 257, 260, 270, 277, 167, 168, 171, 173, 186, 187, 201, 202,
303, 308 208–211, 230, 236, 251, 303
Caregiving, 1–4, 9, 13, 40, 41, 58, 64, 67, Diagnostic related groups (DRGs), 232
83, 120, 151, 153, 163, 165, 167, 168, Diarrhea, 182
170, 172–174, 186, 249, 251, 267–269, Dieticians, see Health professionals, 74
280, 320 Direct care, 2, 41, 47, 80, 109, 241
Cash and counseling, 275 Disability, 3, 9, 47, 63, 80, 96, 97, 151, 162,
Caucasian populations, 4 167, 182, 201, 235, 239, 240, 242, 254,
Center for Medicaid and Medicare 260, 274
(CMS), 270 Discrimination, 63–65, 68, 74
Central nervous system, 201 Do-Not-Resuscitate Order (DNR), 258,
Cervical cancer, 64, 183 259, 303
Chemotherapy, 27, 65, 81, 130, 132, 133, 135, Double effect principle, 300, 301
146, 151, 153, 182, 184, 231–233, 240, Drug addiction
265, 289, 291, 292, 316, 318 fear of, 131
Childhood cancer survivors, 148, 154, 155 Drug tolerance, 131, 134
Childhood cancers Durable Power of Attorney (DPA), 14, 28, 258,
costs of, 153 260, 261
treatment of, 187 Durable Power of Attorney for Health Care
Chronic illness, 7, 104, 147, 150, 207–209, (DPAHC), 261
211, 212 Dysfunctional families, 114
Chronic myeloid leukemia, 183 Dyspnea, 165
Chronic stress, see also Stress, 5, 83
Cisplatin, 133 E
Clinical decision-making, see also Economic issues, 241
Medical decision-making, 184, 189, Education, 2, 3, 9, 11–13, 32, 33, 71–74, 79,
290, 291 85, 94, 96, 97, 115, 116, 127, 128, 138,
Clinical decision-making standards 146, 155, 163, 168, 173, 175, 187, 189,
bronze, 292 190, 218–220, 222, 230, 242, 265, 270,
276, 281, 303, 319, 320
gold, 291
Electrolyte imbalance, 86
silver, 291, 292
Emotional aspects, 8, 50, 131
Clinician-patient relationship, 290
Emotional distress, 8, 10, 40, 41, 47–50, 57,
Cognitive deficits, 50, 148, 266, 271, 272, 275,
58, 83, 92, 154, 180, 186, 319
281, 291
Emotional responses, 7, 40, 41, 48, 49, 54, 82,
Colon cancer, 235, 318
110, 111
Coma, prolonged, 169
Emotions, 69, 85, 107, 110, 114, 129, 133, 155,
Communication, 32, 107, 115 165, 172, 173, 210, 296, 308
Community Clinical Oncology Program End-of-life care, 12, 14, 27, 137, 176, 208, 299,
(CCOP), 191 303
Community-based care, 5, 9, 13 End-of-life issues, 9, 11, 173, 210, 251
COPE model, 115 Endocrine dysfunction, 148
Coping, 4, 8, 12, 40, 50, 51, 186, 211 EPEC program, 303
Coping with cancer (CWC), 51, 52 Epidural catheters, 81
CopingCheck-up for Caregivers, 277 Ethical issues, 14, 119, 287, 288
Cost of illness (COI), 235 Euthanasia, 27, 300, 302–304, 320
CT scans, 203
Index 325
F Influenza, 202
Faith, 9, 171, 205, 206, 215, 216, 219, 222, 250 Insomnia, 111, 187, 201
Faith-based issues, 215, 220 Intensive Care Unit (ICU), 165, 305
Familial adenomatous polyposis (FAP), 183 Intermittent care, 128
Family caregiver, 2–8, 10, 14 Intestinal obstruction, 169
Family Caregiver Alliance (FCA), 272 IV intervention, 289
Family caregivers, 3, 5, 6, 8, 10, 21, 22, 24–31,
40, 50, 58, 119, 147, 168, 186, 187, 191, L
209, 221, 229, 230, 233, 240–244, 268, Legal issues, 13, 249, 251, 257
269, 271, 272, 274, 276, 277, 279, 280, LGBT, 259, 260
287, 293, 305, 308, 321 Liver cancer, 64
Family dynamics, 21, 27, 29–31, 33, 34, 113, Liver metastases, see Liver cancer, 169
119, 173, 215, 280 Long-term cancer survivors, 12, 147, 149
Family issues, 9, 132, 164 Long-term care, 11
Fatigue, 4, 6, 81, 85, 86, 90, 111, 116, 128, Long-term care, community, 185, 202
133, 135, 136, 138, 140, 186, 187, 190, Long-term care, home-based, 185, 260
201, 208, 212, 213, 230, 318 Long-term caregiving, 118, 136, 152, 153,
FICA, 216, 221 156, 182
Financial care, 2 Long-term illness, 53, 266
FMLA, 97, 120, 134, 139, 251, 252, 268, 269 Lorazepam, 133
Frustration, 49, 70, 85, 112, 131, 132, 150, 169 Loss of energy, 182
Love, 212, 318
G Lung cancer, 24, 27, 30, 31, 33, 53, 68, 69,
Gait, 133 89, 91, 145, 149, 151, 207, 209, 232,
Gastrointestinal dysfunction, 148 235, 318
Gastrointestinal stomal tumor, 183 Lung cancer, stage IIB, 33
Gender disparity, 68 Lung cancer, stage IV, 27, 33
Gender disparity in cancer care, 68 Lymphadenopathy, 134
Lymphangitic lung metastases, see Lung
H
cancer, 169
Hair loss, 182
Healing, 24, 112, 113, 117, 162, 168, 171, 172,
176, 203, 206 M
Health disparities, 10, 63, 65, 69, 71–74 Medical decision-making, 120, 127
Health professionals, 8, 10, 29, 52, 53, 57, Medications, 2, 5, 6, 13
70–72, 74, 117, 120, 168, 185, 235, 265, Mental disability, 2
278, 280, 291, 308 Mini-transplant, 184
Healthcare system, 1, 40, 91, 92, 94, 202, 203, Miracle cures, 130
214, 222, 223, 243, 298, 306 Mobility status, 49
Hispanic/Latino, 10, 65–68, 72 Mood disturbance, 4, 40, 53, 57, 81, 83
HIV patients, 208 Morbidity, 179, 235
Hormonal therapy, 185 Morphine, 300
Human papillomavirus (HPV), 183 Mortality, 179, 235
Hypercalcemia, see Renal failure, 169 MRI, 318
Hypertension, 116, 201 Multiple-drug resistance, 184
Musculoskeletal sequelae, 148
I
Illness N
length of, 49 Nanocarriers, 184
Immunotoxins, 183 Nanotechnology, 184
Impact of cancer, 10, 11, 39, 41, 49, 104, Narcotics, 131, 136
147, 315 National Cancer Institute (NCI), 70, 191,
Indirect care, 109, 110 231, 277
Individual Education Programs (IEPs), 138 National Coalition for Cancer, 146
326 Index
National Institutes of Health (NIH), 72, Professional caregivers, 3, 4, 6–8, 13, 22, 24,
277, 280 26–33, 108, 118, 203, 208, 213, 215,
Nausea, 81, 116, 133, 182, 186 218, 219, 221–223, 243, 265, 308,
Neuropathy, irreversible, 86 315, 320
NFCA, 2, 3, 268, 277 Prophylactic therapy, 185
NFCSP, 96, 256, 257, 269, 271–273, 275 Prostate cancer, 68, 130, 235, 318
Nurses, 3, 8, 50, 53, 56, 65, 70, 71, 74, 85, 111, Psychologists, see also Health professionals, 3,
115, 119, 138, 152, 153, 155, 208, 213, 8, 53, 65, 71, 74, 214, 219, 220, 222,
214, 216, 219, 220, 222, 267, 282, 290, 296, 309, 320
296, 304, 305, 315, 318, 320 Psychosocial issues, 51
Psychotherapy, 53, 79, 85, 113
O Pulmonary edema, 289
Older Americans Act (OAA), 96
Opioids, see also Pain control, 134, 169 Q
Oral and parenteral medications, 233 Quality of life, 162, 208
Oxycontin, see also Pain control, 134
P R
Pain control, see also Pain management, 86, Racism, 65, 68
116, 130, 134, 164, 305 Radiation therapy, 27–29, 31, 81, 130, 181, 182
Pain management, 50, 68, 81, 85, 90, 110, 130, Radiographic testing, 161
131, 134, 186, 187, 190, 208, 300, 308 Rectum cancer, 235
Palliative Relaxation techniques, 51, 86
non-surgical, 169 Renal failure, 27, 169
surgical, 169 Resilience, see also African American
Palliative sedation, 301, 303, 304, 320 caregivers, 8, 10, 63, 66
Paternalism, 290 Respiratory depression, 300
Patient controlled analgesia (PCA), 81, Respiratory depression, fear of, 131
134, 136 Respiratory illness, see also Respiratory
Patient–caregiver centeredness, 85 depression, 202
Peripheral neuropathy, 133 Rosalynn Carter, 1, 3, 9
PERKS, 108, 319 Rosalynn Carter Institute for Caregiving (RCI),
Pharmacology, 183 9, 268
Phase in treatment trajectorysee Cancer
trajectory, 49 S
Physical and recreational activities, 51 SAM spouses, 51
Physical disability, 2 SAM spouses vs. control spouses, 51
Physical therapists, see also Health Scalp tourniquets, 130
professionals, 74, 152 Scar formation, 181
Physicians, 3, 8, 28–30, 32, 50, 53, 65, 68, 70, SEER, 235
71, 74, 85, 89, 107, 112, 115, 117, 138, Sexual orientation, 63
139, 152, 173, 181, 203, 206, 207, 213, Short-term care, 11
214, 216, 218–220, 231, 239, 243, 255, Side-effects
289–291, 293–302, 304–306, 315, 316 reduced, 181
Policy, 2, 9, 13, 14, 33, 34, 56, 71, 74, 96, 119, treatment-related, 182, 186
139, 156, 163, 174, 175, 191, 192, 218, Skin irritation, 182
221, 243, 255, 280, 319 Sleep deprivation, see also Insomnia, 5
Postoperative complications, 181 Social workers, see also Health professionals,
Poverty, 63, 64, 69, 73, 234, 241 3, 53, 65, 74, 119, 155, 213, 214, 219,
Premature death, 39, 235 220, 222, 296, 304, 309
Prevalence, 5, 63, 69, 80–82, 209, 270, 280, Spiritual distress, 201, 204, 219
283 Spiritual issues, 203, 207, 209, 214, 216, 217,
Problem-solving therapy (PST), 114 219, 220, 222
Professional, 9 Stomach cancer, 64
Index 327
Stress, 5, 26, 27, 51, 52, 68, 83–85, 89, 91–93, Transportation, 5, 13, 70, 73, 81, 82, 94, 97,
96, 98, 111, 116–118, 135, 136, 138, 105, 109, 113, 127, 133, 136, 137, 140,
149, 154, 168, 170, 184, 185, 201–204, 152, 162, 230, 233, 235, 240, 242,
208–213, 215, 218–221, 236, 244, 251, 270, 279
260, 266, 279, 294, 304, 306 Trauma, 204
Stress and Activity Management (SAM), 93 Treatment decision-making, 184
Stroke, 212, 291 Treatment team, 10, 11, 104, 106, 109, 112,
Suicide 113, 116, 117, 119
physician-assisted, 301–304, 320
Superior vena cava syndrome, see Lung U
cancer, 169 U.S. Food and Drug Administration (FDA), 231
Support programs, 9, 79, 95, 97, 118, 156, 240, U.S. Gross National Product (GNP), 231
273, 275, 276
V
T
Veil of silence, 151
Tension, 5
Vincristine, 130, 133
Therapeutic alliance, 11, 106–108,
Vomiting, 81, 133
111–115, 119
Threat of illness, 49
Time of recurrence, 8, 50, 85 W
Toxic side effects, see also Side effects, 86 White Americans, 63, 69
Training, 9–11, 32, 33, 52, 57, 58, 63, 71, 74,
104, 115–117, 150, 155, 163, 168, 175, Z
189–191 Zofran, 132

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Caregiving

Research • Practice • Policy

For further volumes:

Pamela Hinds, PhD, RN, CS

Cancer Caregiving in the

Research, Practice, Policy

ISSN 2192-340X ISSN 2192-3418 (electronic)

Library of Congress Control Number: 2012934957

© Springer Science+Business Media, LLC 2012

Printed on acid-free paper

Springer is part of Springer Science+Business Media (www.springer.com)

To the caregivers of the past, present, and

To Beth, who is always there through thick

As we survey the field of caregiving today, we now recognize that it is an essential

Part I Issues Effecting the Care Triad

2 Diagnostic Issues: Family Dynamics and Caregiving

3 The Emotional Responses of Family Caregivers: Living with Cancer

4 The Impact of Health Disparities on Cancer Caregivers . . . . . . . . . . . . 63

5 Education, Training, and Support Programs for Caregivers

6 What Professionals in Healthcare Can Do: Family Caregivers

Part II Issues in Providing Direct Care

7 Issues Faced by Family Caregivers in Providing Appropriate Care

9 Caregiver End-of-Life Care of the Person with Cancer . . . . . . . . . . . . . 161

10 Advances in Cancer Care Impacting Familial Caregiving . . . . . . . . . . . 179

Part III Cross-Cutting Issues Impacting Caregivers and Caregiving

11 Caregiver Stress: The Role of Spirituality in the Lives

12 The Economics of Cancer Care: Implications for Family Caregivers 229

13 Legal Issues in Cancer Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 249

14 Cancer Caregiving: Policy and Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . 265

15 Caregivers of Patients with Cancer: Ethical Issues . . . . . . . . . . . . . . . . . 287

16 Cancer and Caregiving: Changed Lives and the Future

Ronda C. Talley, PhD, MPH is Professor of Psychology at Western Kentucky Uni-

Walter F. Baile, MD is Professor of Behavioral Science and Director of the Pro-

Joann Aaron, MA is a Scientific Editor/Medical Writer, Department of Community

Sheryl LaCoursiere, PhD, FNP-BC, APRN is a Clinical Assistant Professor at the

Ruth McCorkle, Ronda C. Talley and Walter Baile

Caring for a Loved One with Cancer:

R. C. Talley et al. (eds.), Cancer Caregiving in the United States, 1

Definitions of Caregiving, Family Caregiver,

To define caregiving, we turned to several well-known caregiving researchers and

Our Nation’s Caregivers

Caregivers of a Loved One with Cancer

According to a recent report by the American Cancer Society (Cancer Statistics

more cancer treatments provided on an ambulatory basis, much of the responsibility

Caregiver Psychological Cost

Caregiving Fiscal Cost

Caregiver Health Costs

Several studies attribute caregiving to a decline in personal health. The Caregiver

goals and expectations. Within patient- and caregiver-centered care paradigms, it

The literature includes a number of studies describing strategies to help caregivers

Genesis of the Rosalynn Carter Institute Caregiving Book Series

Contents and Organization of Caring for a Loved One with

Issues Affecting the Care Triad

Issues in Providing Care

Cross-cutting Issues Impacting Caregivers and Caregiving

Diana J. Wilkie and Stuart J. Farber

Conceptual Models for Cancer Care

Family Caregiving Needs

Pre diagnosis Treatment Recurrence Death