Article

Policy, Politics, & Nursing Practice

2016, Vol. 17(1) 32–42
Social, Economic, and Political Issues ! The Author(s) 2016
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Affecting End-of-Life Care sagepub.co.uk/journalsPermissions.nav

DOI: 10.1177/1527154416642664
ppn.sagepub.com

Janet Sopcheck, MA, RN1

Abstract
For many decades, Americans showed a preference for delaying death through a technological imperative that often created
challenges for nurses in caring for dying patients and their families. Because of their vast knowledge of health and healing, and
their proximity to patients’ bedsides, nurses are often well positioned to advocate for healthcare reform and legislation to
improve end-of-life care. This article provides an overview of the social, economic, and political factors that are shaping end-
of-life care in the United States. First, historical perspectives on end-of-life care are presented to enhance understanding of
why some clinicians and patients seem to resist change to current practices. Second, end of care issues related to advanced
technology utilization, societal expectations of care, clinical practices, financial incentives, palliative care services, and policy
reforms are discussed. Finally, future recommendations are provided to encourage nurses and other healthcare providers to
improve care for individuals facing end-of-life care decisions.

Keywords
historical events, end-of-life care, technological imperative, practice reforms, palliative and hospice services, nursing’s caring

Since the 1970s, changes in clinical practice and enact- disease-complicating morbidities or terminal prognoses
ment of federal legislation to improve the quality of end- (Callahan, 2011). Witnessing the experiences of patients
of-life care and reduce its costs continue to present and families gives nurses insights into the complexities of
formidable challenges to clinicians, healthcare adminis- improving end-of-life care (Giovanni, 2012; Gutierrez,
trators, patients, families, insurers, and policymakers in 2012; Martins & Basto, 2011). Furthermore, because
the United States (Brown, 2012; Callahan, 2012; Halpern they are the mainstay of care in most healthcare systems,
& Emanuel, 2015). Palliative and hospice care services nurses have the potential to be effective advocates for
have expanded significantly since 2000. However, clinical palliative care policy changes in organizations and
practices in acute care delivery settings remain relatively government.
unchanged in terms of utilization of intensive care thera- The purpose of this article is to provide an analysis of
pies at the end-of-life, potentially postponing timely the social, economic, and political factors shaping end-
referrals to hospice services (Callahan, 2012; Fuchs, of-life care in the United States. The article starts with an
2011; Halpern & Emanuel, 2015; Medicare Payment overview of historical events that have influenced end-of-
Advisory Commission, [MedPAC], 2014). Some policy life care and continues with explanation of the social,
scholars speculate that certain policy stakeholders, such economic, and political factors involved. It ends with a
as healthcare administrators, insurers, and policymakers, description of care and policy implications for nurses in
whose interests appear to be motivated by economic and advancing quality care for the dying and their families.
political gains, have hindered federal legislative reform to
enhance palliative care for the terminally ill (Epstein,
2007; Institute of Medicine, [IOM], 2015; Meier, 2011). 1
PhD student, Christine E. Lynn College of Nursing, Florida Atlantic
Advances in medical technologies coupled with University, Boca Raton, Florida
healthcare providers’ reticence to discuss death can Corresponding Author:
affect patients’ and families’ expectations about pro- Janet Sopcheck
longing life, even in the face of patients suffering with Email: [email protected]
Sopcheck 33

healthcare coverage of the nation’s older adults, dis-

Historical Overview abled, and poor, and mothers and children who were
At the beginning of the 20th century, Americans dependent on welfare. With the increase in healthcare
embraced death as an inevitable outcome of life. funding from Hill-Burton, Medicare, and Medicaid
Individuals died predominantly in the home cared for laws and patients admitted to hospitals, deaths contin-
by family, followed by a communal mourning to ued to rise on hospital wards. Medicine’s curative philo-
acknowledge that person’s life (Callahan, 2005; Elder, sophy prompted the development of intensive care units
1973; Keegan & Drick, 2011). Longevity was recognized (Fairman & Lynaugh, 1998; Fuchs, 2011).
as one’s good fortune in not having succumbed to any In 1969, more than 50% of U.S. not-for-profit hos-
acute infectious processes such as tuberculosis or pneu- pitals had intensive care units (Fairman & Lynaugh,
monia, which were the primary causes of death in the 1998). Advancements in science and healthcare gave
early 1900s (Fontana & Keene, 2009). new meaning to the finality of death and where
Early 20th century public health enhancements in death would occur (Brown, 2012; Cassell, 1974). In
sanitation, water quality, and housing contributed to response to the dilemmas created by both the increased
improved patient and population health outcomes. utilization of life-extending therapies and interests in
Medical practice also progressed through standardized promoting organ transplantation, brain death criteria
training, new medications, and treatments (Fontana & were first introduced at Harvard Medical School in
Keene, 2009; Keegan & Drick, 2011). With the introduc- 1968. In 1981, Congress enacted the Uniform
tion of antibiotics in the 1930s and 1940s and ongoing Determination of Death Act which provided states
medical advances to treat illnesses, expectations of living with model legislative language for determining death
longer healthier lives than in the past flourished. In 1900, (Kellehear, 2008).
the average U.S. life expectancy was 50 years of age, With advances in technology and expansion of profes-
considerably lower than it was in 1940 (63 years of sional healthcare in hospitals, many Americans thought
age) and 1950 (68 years of age) (Elder, 1973; Fontana that they could be cured and or that their deaths could be
& Keene, 2009; Keegan & Drick, 2011). Chronic debili- delayed. A new technological imperative emerged
tating diseases including cancer, heart disease, and stroke (Callahan, 2005, 2012; Fuchs, 2011; Hofmann, 2002).
became the new enemies of society (Callahan, 2005; The technological imperative refers to the increased uti-
Curtin, 2004; Fontana & Keene, 2009). lization of advanced technologies by physicians to “do
The Hospital Survey and Construction Act of 1946, everything possible” to extend the life of the individual
known as the Hill-Burton Act, reframed Americans’ prolonging the inevitability of death (Callahan, 2012, p.
access to care by encompassing all people, regardless of 456; Fuchs, 2011; Hofmann, 2002, p. 675). In other
race. Some policymakers and historians viewed this new words, aggressive treatments will be implemented to do
approach as an important expression of social justice everything possible to sustain life (Callahan, 2012;
(Fairman & Lynaugh, 1998; Hoge, 1948). Under the Hofmann, 2002).
Hill-Burton Law, Congress allocated a total of $1.125 In the 1960s and 1970s, there was growing awareness
million to states for planning the development and con- that use of advanced technologies to sustain life, para-
struction of hospitals and health facilities to meet the doxically, could make dying less humane (Kaufman,
growing healthcare needs of individuals within commu- 1998). Kubler-Ross (1969) heightened America’s aware-
nities in the post World War II era. Hill-Burton also ness of the dying experience and the need for humanistic
granted the federal government the authority to approve care. In 1963, Dame Cicely Saunders from England intro-
individual states’ reconstruction plans; federal govern- duced the concept of hospice at Yale University School of
ment funding began in 1948 (Hoge, 1948). Nursing (Adams, 2009; Buck, 2007). The dean at Yale
With the increase in the supply of hospital beds as a School of Nursing at the time, Florence Wald, had inter-
result of the Hill-Burton law, the public expected hospitals ests in transforming bedside care for terminally ill
to provide cures for illnesses, including fatal ones (Fairman patients that paralleled Saunders’ ideals (Buck, 2007).
& Lynaugh, 1998). In 1948, Vane M. Hoge, then Chief of Their collegial relationship led to Saunders’ visiting
the Division of Hospital Facilities (U.S. Public Health professorship at Yale School of Nursing in 1966 and
Service) commented on how “increasing numbers of Wald’s volunteerism at St. Christopher’s Hospice in
people have come to see that health is more than an indi- London in 1968 (Adams, 2009; Buck, 2007). By 1974,
vidual problem-that illness and disability in any group is The Connecticut Hospice opened with funding from the
both an economic liability and a direct threat to the health National Cancer Institute (NCI) (Hoffmann, 2005; Wald,
of the community as a whole” (Hoge, 1948, p. 103). Foster, & Wald, 1980). Because of Wald’s dedicated
Enactment of Medicare and Medicaid in 1965 infused efforts in starting hospice care in the United States and
millions of additional federal and state dollars into as a founding member of Hospice, Inc. in 1971, she has
34 Policy, Politics, & Nursing Practice 17(1)

been identified as the “mother of hospice nursing” (Buck, utilization of advanced technologies in caring for indivi-
2007, p. 122; Wald et al., 1980). duals at the end-of-life. In the sections that follow,
The hospice and palliative care movement continued, “society” refers to the general American public.
supported by federal and philanthropic research funding.
With the formation of national organizations such as the
The U.S. as a Death-Denying Society
National Hospice Organization in 1978, renamed the
National Hospice and Palliative Care Organization Death is a “social relationship,” in which culture, values,
(NHPCO) in 2000 (Buck, 2007; Hoffmann, 2005), society emotions, and personal relationships dynamically alter
was introduced to a new world view of holistic family- the physiological process of dying and death’s meaning
centered comfort care for the dying as an alternative to (Kellehear, 2008, p. 1534). Although death is inevitable,
the predominant curative medical model (Adams, 2010; it is an elusive topic grounded in a fundamental fear of
Hoffmann, 2005). what is unknown (Fontana & Keene, 2009). Many indi-
Palliative care is not the same as hospice care. It covers viduals avoid conversations about death. Not knowing
a broad range of services without the requirement of a life the exact circumstances of one’s death, makes planning
expectancy of 6 months or less (Jennings & Morrissey, or thinking about it difficult (Brown, 2012; Keegan &
2011). In 1990, the World Health Organization (WHO) Drick, 2011; Kellehear, 2008).
defined palliative care as “the active total care of patients Societal perspectives, personal social relationships,
whose disease is not responsive to curative treatments” and cultural norms of healthcare institutions focused
(p. 11). In a 2015 report, Dying in America, the IOM on curing all influence the time, place, and situation of
defined palliative care “as care that provides relief from death (Callahan, 2012). Older individuals (e.g., those 65
pain and other symptoms, that supports quality of life, years of age and older) often find it easier to discuss and
and that is focused on patients with serious advanced confront death than younger adults (Fontana & Keene,
illnesses and their families” (IOM, 2015, p. 7). 2009; Sessanna, 2010). Older adults probably have
In the 1980s and continuing into the 1990’s, grass- experienced death of significant others, which might
roots activists, such as members of the “right to die” prompt conversations about death and dying
movement, and philanthropic organizations, such as (Gruenewald & White, 2006).
Soros’ Death in America Project and the Robert Wood The majority of individuals do not think about death
Johnson Foundation, worked to heighten society’s until confronted by a grave illness or an end-of-life situa-
awareness of the need for improvements in care that tion (IOM, 2015; Pew Research Center, 2013) and then
honors the rights of the dying (Brown, 2012; they hope that medical advances will save them from or
Hoffmann, 2005; Kaufman, 1998; Soros, 1999). The delay death (Callahan, 2012; Fontana & Keene, 2009).
1990s also heralded the enactment of the 1990 Patient Ironically, society is also intrigued by death and the mys-
Self Determination Act (PSDA) (PSDA, 1990) and the tery that surrounds it (Fontana & Keene, 2009); subse-
1997 Oregon Death with Dignity Act (Kaufman, 1998). quently, society is enraptured with dramas that save
The PSDA mandated that institutions inform patients people from catastrophic illnesses (Kellehear, 2008).
about advance directives and their right to make auton- Although Americans may want to deny death, the
omous decisions about their health care which included print and broadcast media have attempted to enhance
refusal of treatment (Duke, Yarbrough, & Pang, 2009; society’s awareness of the expenditures associated with
PSDA, 1990). The Oregon law permits individuals with dying (Kovner & Lusk, 2012) while also focusing on
medically confirmed terminal illnesses to self-administer youth and advancing treatments for chronic conditions
physician-prescribed medications to end their own lives (Callahan, 2012; Jennings & Morrissey, 2011).
(Oregon Health Authority, n.d.).
In 1992, 143,000 Medicare beneficiaries were enrolled
in hospice, reaching 464,000 enrollees by 2000
Demographics and Diversity
(MedPAC, 2002, p.4); and by 2013, the number of enrol- Predictions about shifts in the U.S. population have con-
lees increased to more than 1.3 million (MEDPAC, 2015, tributed to a sense of urgency to reform end-of-life care.
p. 289). In 1992, 1,208 hospices participated in Medicare, As baby boomers (those born between 1946 and 1964)
increasing to 2,283 in 2002 (MedPAC, 2002, p.5) and age, the number of Medicare eligible older adults with
3,925 in 2013 (MedPAC, 2015, p. 294). chronic life-ending conditions will continue to rise
(American Hospital Association [AHA], 2011; Ortman,
Velkoff, & Hogan, 2014). By 2030, the number of indi-
Social Factors Affecting End-of-Life Care viduals age 65 and over is predicted to reach almost
Social factors that affect end-of-life care include perspec- 73 million, increasing to nearly 84 million in 2050.
tives on death and dying, changing demographics, and Individuals 85 years of age and over are expected to
Sopcheck 35

reach nearly 9 million by 2030 and 18 million by 2050 mistrusts about discontinuing care that healthcare clin-
(Ortman et al., 2014). The older adult population in 2013 icians may consider futile and create more peaceful death
neared 45 million with approximately 6 million indivi- experiences. Providing information on the benefits of
duals 85 years and older (Department of Health & palliative care may prompt patients’ and families’ deci-
Human Services [DHHS], 2014). sions about transitioning to hospice (IOM, 2015).
By 2030, the number of individuals 65 years of age Besides cultural variations related to end-of-life care
and older who identify as Black Americans, Hispanics, preferences, patients and their families may delay or
Asians, and American Indians or Alaskan natives is pre- forego life-sustaining treatment decisions because of
dicted to be 21 million (almost 29% of the older adult lack of knowledge about terminal disease trajectories,
population) (DHHS, 2014). This upward trend will likely hopes for a miracle cure instigated by media reporting
continue so that by 2050, the number of individuals from of the latest research and pharmaceuticals for various
these same groups is estimated to be approximately 33 diseases, as well as a family members’ lack of knowledge
million (39% of the 65 and over population) (Ortman about loved ones’ end-of-life preferences (Callahan, 2102;
et al., 2014). This will require expanding healthcare pro- IOM, 2015; Jennings & Morrissey, 2011; Pizzo, 2015).
viders’ education related to cultural traditions and per- Healthcare clinicians may also be reluctant to advise
spectives about end-of-life for diverse populations. To patients and families that continuing aggressive therapies
meet the end-of-life care needs of ethnically diverse and is futile because they do not want to relinquish their
underserved populations, healthcare providers, educa- hopes of a possibility for survival (Callahan, 2012;
tors, and policymakers will need to enhance availability Pizzo, 2015). Family members may also have doubts
of palliative care services and increase the number of because the aggressive therapies seemingly are maintain-
qualified healthcare providers within interdisciplinary ing their loved one’s stability (Callahan, 2011; Crippen,
teams (IOM, 2015). Expanding palliative care services 2005; Perry & Stone, 2011). Additionally, clinicians may
would benefit individuals from underserved populations discover that the therapies provided are not the ones that
such as immigrants who often seek medical treatments patients or their families prefer (Giovanni, 2012;
late in disease progression because of their lack of health Gutierrez, 2012; Jennings & Morrissey, 2011).
literacy or the unavailability of healthcare services Generally, minority populations opt for more inten-
(Nedjat-Haiem & Carrion, 2015). sive therapies at the end-of-life than other groups. Many
individuals from minority groups have not completed
advance directives about end-of-life preferences particu-
Debates Over Futility
larly among Black, Hispanic, and Asian patients (IOM,
Determining what constitutes futile care is difficult 2015, p. 151). Honest, open, and culturally sensitive com-
because clinicians, scholars, and policymakers subjec- munication by healthcare clinicians needs to be pro-
tively interpret its meaning (Callahan, 2012; Epstein, moted with patients and families to enhance their
2007; Mohammed & Peter, 2009). One perspective is understanding of disease trajectory and impending
that medical futility consists of therapeutic interventions death, even in the most difficult situations.
that fail to produce beneficial patient outcomes
(Coustasse, Quiroz, & Luire, 2008). Another interpreta-
Economic Factors
tion of medical futility is that it refers to “any effort to
achieve a result that is possible but that reasoning or Economic factors pertaining to end-of-life care include
experiences suggests is highly improbable and that healthcare expenditures in the last year of life. They also
cannot be systematically produced” (Schneiderman, include utilization of palliative care and hospice services
Jecker, & Jonsen, 1990, p. 951). On the other hand, for individuals who are terminally ill in healthcare set-
extending medical interventions in a holistic manner tings such as hospitals and long-term facilities.
might not be futile if it assists in resolving uncertainty,
promotes well being, or extends a patient’s life so that
Health-Care Expenditures
family members reach some type of closure related to a
loved one’s passing (Coustasse et al., 2008; An understanding of U.S. healthcare spending is useful
Schneiderman et al., 1990). for appreciating how palliative care costs compares with
Without a consensual or legal definition of futility, other expenditures. Data on healthcare spending also
medical, political, and ethical disputes over end-of-life can identify gaps in evidence and how end-of-life care
will continue (Callahan, 2012; Coustasse et al., 2008; spending might vary by payer (insurer), demographic
McCabe & Storm, 2008). With the predicted shifts in group, or other factors.
cultural demographics in the U.S. population addressing In 2014, healthcare expenditures accounted for 17.5%
preferences for end-of-life care in honest conversations of the U.S. federal budget (Centers for Medicare &
with patients and families is paramount to quell Medicaid Services[CMS], 2015b). Although the
36 Policy, Politics, & Nursing Practice 17(1)

utilization of hospital services for Medicare recipients in Utilization of Hospice and Palliative
their last 6 months of life decreased by about 10%
between 2007 and 2010, the average number of days
Care Services
spent in intensive care unit (ICU) remained unchanged Hospice care has become a commercialized multibillio-
at 3.9 (Goodman et al., 2013). Hospital care expenditures naire dollar industry with Medicare reimbursements
rose from $692 billion in 2007 to $817.6 billion in 2010, accounting for about 90% of hospice providers’ revenue
reached $971.8 billion by 2014 (CMS, 2015b); and are (Brown, 2012; NHPCO, 2013; Perry & Stone, 2011).
projected to increase to $1,755.1 billion in 2024 (Keehan Medicare spending for hospice increased from $2.9 bil-
et al., 2015). Hospital care consumes approximately one lion in 2000 to $15.1 billion in 2013 (MedPAC, 2015, p.
third of national healthcare spending (AHA, 2011; CMS, 289). In 2000, 22.9 % of Medicare decedents were enrolled
2015b). Spending on health resources such as pharma- in hospice (MedPAC, 2014, p. 300) compared with 47.3%
ceuticals and advanced technologies continue to increase in 2013 (MedPAC, 2015, p. 293). The number of hospice
consistent with the growth of hospital care expenditures and palliative care services continues to rise, primarily in
(AHA, 2011; Fuchs, 2011). Use of technology accounts the for-profit market. Between 2012 and 2013, hospice
for a major part of national health expenditures, subse- providers increased by 5.3% (MedPAC, 2015, p. 294). In
quently increasing health insurance costs (AHA, 2011). 2013, Medicare beneficiaries received hospice care from
Overutilization of ICU services coupled with increased 3,925 providers, 61% of which were for-profit hospices,
hospital admissions and extended ICU stays for older 33% nonprofit, and 5% were under government auspices
adults in the last few months of life continues to escalate (MedPAC, 2015, p. 294).
healthcare costs without necessarily improving the quality Hospitals get paid at higher rates for intensive care
of care or patient outcomes (Niederman & Berger, 2010; services than hospice or palliative care. This could result
Teno et al., 2013). Overtreatment or extending aggressive in clinicians delaying referrals to hospice because third
life-sustaining therapies in patients who are not likely to party payments to acute care organizations for aggres-
survive account for a portion of the “wasteful” annual sive therapies tend to be more lucrative than palliative or
healthcare expenditures, which in 2011 was “estimated at other end-of-life care (Brown, 2012; Fuchs, 2011; Smith
between $158 billion and $226 billion (Berwick & & Cassel, 2009).
Hackbarth, 2012, p. 1514) Intensive and life-sustaining Nationwide, approximately 1.6 million individuals
therapies can result in expenditures of more than three received hospice services from 5,500 hospice providers in
quarters of the total final year of life healthcare costs in 2012 (NHPCO, 2013, p. 4, 8); which included about 1.2
the last month of life (Zhang et al., 2009). million Medicare beneficiaries receiving care from over
In 2014, Medicare expenditures ($618.7 billion) 3,700 hospices (MedPAC, 2014, p. 299). Although hospice
accounted for 20% of national healthcare spending and palliative care services have expanded tremendously,
(CMS, 2015b), with about 27% expended for benefici- they continue to be utilized predominantly by individuals
aries in the last year of life (Hogan, 2015; CMS, 2015b). in their last weeks of life. Attributing factors for late access
In 2012, average annual payments for Medicare Parts A/ are society’s focus on curative therapies confounded by
B were approximately 85% higher for decedents prognostic uncertainties surrounding many diseases
($46,793) than survivors ($7,181) (Hogan, 2015). The (MedPac, 2014; NHPCO, 2013). Out of the estimated
majority of all U.S. healthcare expenditures are for the 2.5 million Americans who die annually, approximately
last 6 to 12 months of life (Giovanni, 2012; Jenq & 45% are receiving hospice services at the time of death
Tinetti, 2013). Medicare is the major payer for those (Keegan & Drick, 2011; NHPCO, 2013). According to
expenditures. Approximately 73 % of deaths (in 2013) the NHPCO (2013), in 2011 and 2012, nearly 36% of hos-
were among individuals 65 years and older (Centers for pice patients had lengths of stays of less than a week.
Disease Control and Prevention, CDC, 2015). The majority of hospice patients are older adults; 16%
Geographic variations exist related to length and of patients admitted to hospice in 2012 were under 65
intensity of treatments and healthcare expenditures for years of age. Approximately 40% were 85 years or older.
Medicare beneficiaries. Newhouse and Garber (2013) One third of hospice deaths occurred within an inpatient
report disparities between low and high cost regions hospice facility or a hospital and about one fourth
that are due to diagnostic billing, physicians’ preferences occurred in a nursing home or residential facility
related to aggressiveness in treating, and the utilization (NHPCO, 2013, p. 6). Approximately 63% of hospice
of post-acute services, which include hospices, long-term patients have non-cancer related illnesses such as heart
facilities, and home health care. Although age and dis- and lung disease and dementia (NHPCO, 2013, p. 7).
ease-specific variations exist among patients, increased Racial and ethnic disparities in hospice utilization exist
spending for medical care overall does not decrease mor- with African Americans admitted ten times less than
tality rates (Rothberg, Cohen, Lindenauer, Maselli, & Caucasians (NHPCO, 2013, p. 7). Of the total number
Auerbach, 2010). of hospice patients in 2012, about 7% were of Hispanic
Sopcheck 37

or Latino ethnicity and 2.8% were Asian or other Pacific to the 1983 Medicare Hospice Act’s regulation to require
Islander (NHPCO, 2013, p. 7). patients to forego curative care as a criterion for hospice
Approximately two thirds of hospitals nationwide admission. The only exception was children with term-
have a palliative care team (Center to Advance inal conditions, who under the ACA now have the
Palliative Care, [CAPC], 2012). These inpatient teams option of receiving both curative and palliative therapies,
can bridge the gap between intensive therapies and hos- reimbursable by state Medicaid and Children’s Health
pice care (Teno & Connor, 2009). In-hospital palliative Insurance Programs (Brown, 2012; Giovanni, 2012).
care programs have been shown to alleviate patient and The 1982 Tax Equity and Fiscal Responsibility Act
family suffering, enhance patient and family satisfaction, (TEFRA), Section 122 had provisions that enabled
reduce intensive care lengths of stay, lower overall hos- Medicare to finance hospice services for beneficiaries in
pital costs, and in some cases, prolong life with better their last 6 months of life, beginning in November 1983
disease management which alleviates the suffering and (Department of Health and Human Services, HHS,
potential complications from acute medical interventions 1983; Miller & Mike, 1995). This Medicare Hospice
(Jennings & Morrissey, 2011; Meier, 2011; Teno & Benefit allocated payments prospectively on a per diem
Connor, 2009; Wholihan & Pace, 2012). rate reimbursed under Medicare Part A depending on
Despite these advantages, reimbursement systems for the level of service provided to the beneficiary from
palliative care services lack structures and mechanisms to Medicare approved hospices. The four levels of service
encourage hospitals to use inpatient palliative care pro- established under the law-routine home care, continuous
grams (Brown, 2012, p. 475; Meier, 2011). Moreover, the home care, inpatient respite care, and general inpatient
public has yet to demand that palliative care services care-structure daily reimbursement rates to present day
become standard practice within healthcare systems (MedPAC, 2015; Miller & Mike, 1995). The 2015
(Giovanni, 2012; Jennings & Morrissey, 2011). Medicare per diem base payment rates for routine
Americans may be lead to believe that “more care” home care, inpatient respite care, and general inpatient
results in better health outcomes (Brown, 2012, p. 478). care were $159.34, $164.81, and $708.77, respectively.
Although, palliative care advocates are trying to change Continuous care for Medicare beneficiaries is reimbursed
the public’s view about the benefits of palliative and at a base hourly rate of $38.75 (MedPAC, 2015, p. 290).
hospice services for patients who are nearing the end- Under the Medicare hospice benefit, beneficiaries usually
of-life as well as the cost effectiveness of these services have to forego curative therapies.
compared to intensive medical treatments (Jennings & The ACA (Section 3021) created a Center for
Morrissey, 2011; Meier, 2011). Arguments reframed Medicare and Medicaid Innovation within the Centers
through a humanistic and pragmatic lens emphasizing for Medicare & Medicaid Services to “test innovative
that care is not being limited or curtailed, but rather payment and service delivery models” (ACA, 2010, p.
redirected to palliative measures to enhance quality 306). Subsequently, CMS (2015a) has initiated a
care at the end-of-life, may encourage transitions to ser- Medicare Hospice Concurrent Care demonstration pro-
vices (Callahan, 2012; Meier, 2011). ject, Medicare Care Choices Model, to evaluate the
In 2014, the IOM released its report on Dying in effects of concurrent “curative treatment and hospice
America, which includes 12 core components of end-of- care” and its impact on patient outcomes and reimburse-
life care and five recommendations for its improvement. ments (ACA, 2010; Brown, 2012; Giovanni, 2012). This
These recommendations emphasize patient-centered, project has been expanded to 5 years, with two phases
family-oriented comprehensive care, timely palliative beginning in January 2016 and January 2018, ending in
care referrals, advance care planning conversations December of 2020; 141 hospices participate with a poten-
among family members, programs to provide knowledge tial enrollment of 150,000 Medicare recipients who meet
and training for health-care professionals, and policy specific diagnostic criteria (CMS, 2015a).
reforms for financing end-of-life care (IOM, 2015).
Among the recommendations for financing are social
Importance of the Patient Self Determination Act
support services for patients and caregivers, integration
of palliative care programs, and advance care planning Although states vary in implementation of the PSDA of
(IOM, 2015). 1990, the original intentions of the law was to give
patients the right to determine health treatment options
and opportunities to complete advance directives. The
Political Factors PSDA defines an advance directive as a “written instruc-
tion, such as a living will or durable power of attorney
Federal Legislation and Funding
for healthcare, recognized under state law (whether stat-
The Affordable Care Act (ACA) lacked funding for hos- utory or as recognized by the courts of the State) and
pice or palliative care services. It also lacked any changes relating to the provision of such care when the individual
38 Policy, Politics, & Nursing Practice 17(1)

becomes incapacitated” (PSDA, 1990). The PSDA also (Brown, 2012; Sabatino, 2010). The Five Wishes and
was intended to promote cost containment at the end-of- other advanced directives are completed at any time
life by decreasing extensive therapies that clinicians often during an individual’s life span and are not medical
prescribed as “defensive medicine” (Duke et al., 2009, p. orders.
114; Fuchs, 2011; Giovanni, 2012).
Since enactment of the PSDA, healthcare expendi-
Patients’ Rights and End-of-Life Choices
tures for intensive care continue to increase and only
25% to 30% of Americans have advance directives Some proposed state legislative reforms directed at
(Callahan, 2012; Duke et al., 2009; Hickman, Hammes, allowing withdrawals from life-sustaining therapies or
Moss, & Tolle, 2005; IOM, 2015). A 2013 survey con- physician-assisted suicide (PAS) in “futile cases” have
ducted by The Conversation Project reported less than evoked controversies and have been stalemated. The
30% of Americans have had end-of-life conversations Texas Futile Law of 1999 gives healthcare systems the
with family members as cited in the IOM report, Dying ability to withdrawn life-sustaining therapies in “futile”
in America (IOM, 2015, p. 125). The PSDA (1990) man- situations even if the family members disagree with the
dated that an adult patient receive written instructions healthcare facility’s decision (Duke at al., 2009). Texas is
about one’s right to make healthcare decisions, refuse the only state that has a law where physicians, not family
care, and initiate advance directives. The law also members, can determine an individual’s life ending.
stated that providers such as hospitals, nursing facilities, Legal documentation and surrogate’s agreement with
home care services, and hospices must provide this infor- physicians’ decisions is required in other states
mation to patients (PSDA, 1990). (Neuberg, 2009).
Nonetheless, advance directives that patients receive Physician-assisted suicide is another controversial
in hospital settings might not provide explicit informa- issue. According to the Pew Research Center’s Survey
tion about a patient’s end-of-life treatment preferences. on end-of-life preferences (2013), Americans are equally
They may be reneged by families and may hinder pro- divided on the issue. Washington and Vermont are the
ductive communication between family members and only two states that have enacted Physician-assisted
healthcare providers about goals of care and prognosis Suicide laws since Oregon did so in 1997. In 2008,
(Giovanni, 2012; Hickman et al., 2005). Family surro- Montana’s Supreme Court authorized Physician-assisted
gate decision makers may have uncertainties about a suicide, but the state legislature has not passed any bills
loved one’s end-of-life preferences in certain care situa- on the issue (Brown, 2012; Masci, 2013).
tions, act in accordance with their own preferences, or
experience emotional conflicts over letting go of a person
Implications for Nursing
whom they care deeply about (Cronin, Arnstein, &
Flanagan, 2015; Wallace, 2015). Demand for long-term and quality end-of-life care will
The Five Wishes is an advance directive that the likely rise as life expectancy increases, management of
Aging with Dignity Organization developed in 1998 to chronic diseases improves, and the public acquires grow-
encourage individuals to state their end-of-life prefer- ing awareness of the importance of compassionate care
ences in their own words and share them with family and choice at the end-of-life. Family members frequently
members. As of 2010, this document is legally recognized experience emotional turmoil and decisional conflicts
in 42 states and available in 28 languages, which enable over end-of-life treatment options for their loved ones
individuals from diverse cultural backgrounds to provide (Gutierrez, 2012). Nurses can offer explanations about
a more detailed description of their end-of-life care the potential benefits of palliative care services
desires (Aging with Dignity, 2015; Sabatino, 2010). An (McHugh, Arnold, & Buschman, 2012). They also can
alternative and an adjunct to a patient’s advanced direc- be the leaders in organizational and government reforms
tive is the Physician Orders for Life-Sustaining to enhance the quality of end-of-life care and respect
Treatment (POLST), which some states refer to as patients’ choices.
Medical Orders for Life Sustaining Treatment The essence of nursing’s compassionate patient and
(MOLST). This document can guide terminally ill family centered caring is aligned with many the goals
patients in articulating end-of-life care treatment choices of palliative care (McHugh et al., 2012) such as alleviat-
with physicians in the last year of life. POLST or ing pain and other disease-related symptoms, providing
MOLST documents specify medical orders based on an care aligned with patient-family needs and supporting
individual’s preferences for end-of-life care interventions patients and their families through difficult end-of-life
and can include aggressive to comfort care measures decisions (Meier, 2011). Nurses often have insights into
determined by the patient or in some cases their surro- their patients’ lives inclusive of the social relationships,
gates (Meier, 2011; Sabatino, 2010). This document also cultural beliefs and values that identify what a “good
has transferability within different patient care settings death” means to each individual. By listening to
Sopcheck 39

nurses’ stories on end-of-life caring (Hassmiller, 2013),

healthcare administrators and researchers begin to
Conclusion
understand their significant role in increasing consumer End-of-life encompasses an array of multidimensional
satisfaction through person-centered, family-oriented factors influenced by an intricate web of social relation-
caring (IOM, 2015; McHugh et al., 2012). ships within healthcare and government organizations.
The overall population mix will be more culturally Although end-of-life care has improved through the
diverse in the next 35 years (Ortman et al., 2014) expansion of palliative care services, additional reforms
adding complexity to nurses’ and other health providers’ that encourage timely transitions to hospice care, end-of-
roles in caring for the dying. Hospitals responding to this life care coordination and the importance of advance
demand could partner with academia to offer courses on care planning are needed. This is especially true as the
cultural humility within end-of-life caring or incorporate country becomes increasingly diverse. Callahan (2012)
The End-of-Life Nursing Education Consortium may be right in claiming that “poor end-of-life care is
(ELNEC) course which includes components on cultural symptomatic of the larger failings of the American health
diversity and age-specific competencies (Giovanni, 2012). care system” (p. 462); and that “war against death is
Programs such as EPEC for physicians and the APPEAL unwinnable and surrender to its inevitability is the
which is focused on end-of-life care for African Americans course of wisdom” (p. 465).
can assist healthcare providers in enhancing conversations Kubler-Ross (1969) encouraged others to listen and
with patients and families to gain understanding and con- learn from the dying. Florence Wald’s legacy of promot-
sensus on goals of care (Callahan, 2005). ing compassionate care at the end-of-life lives on as hos-
Some nurses are voicing their concerns and becoming pice services continue to increase nationwide with nurses
involved in organizational discussions over end-of-life and other healthcare providers continuing their efforts to
care as they witness patients and families struggling heighten public awareness of the benefits of palliative
with these issues (Martins & Basto, 2011; Mohammed care for patients terminally ill and their families.
& Peter, 2009). Families trust and rely on nurses.
Families want details and clarification of their loved Acknowledgments
ones’ prognoses in compassionate communications that The author thanks Dr. Susan Dyess, Dr. Patricia Liehr, and
would assist them in making care decisions (Gutierrez, Dr. Marlaine Smith for their support, guidance, and encour-
2012). Moving to reform end-of-life care requires equal agement in writing this manuscript.
partnerships between medicine and nursing in discussing
goals of care with patients and families. Broad interdis- Declaration of Conflicting Interests
ciplinary collaboration that encompasses other profes- The author declared no potential conflicts of interest with
sions is equally as important. respect to the research, authorship, and/or publication of this
Researchers need to continue to demonstrate nur- article.
sing’s value in promoting early transitions to palliative
care. Other topics that warrant investigation are the Funding
organizational and policy factors that impede or encou- The author received no financial support for the research,
rage palliative care availability and accessibility, espe- authorship, and/or publication of this article.
cially for diverse populations that have various
cultural, religious, social, and other values. Cost analyses References
are also needed regarding innovative community-based Adams, C. C. (2009). The leadership of Florence Wald:
interventions that could be part of palliative care. As Listening to the voices of the early hospice founders and
activists, nurses need to be aware of reform issues that colleagues. Illness, Crisis & Loss, 17(4), 379–398.
are unreachable or too controversial and advocate for doi:10.2190/IL.17.4.k
change focused on the caring aspect of their work and Adams, C. (2010). Dying with dignity in America: The trans-
the patients they care for. Presenting anecdotes about formational leadership of Florence Wald. Journal of
caring for the dying and their families may move legis- Professional Nursing, 26(2), 125–132. doi:10.1016/
j.profnurs.2009.12.009
lators to caucus for reforms. Initiating conversations
Aging with Dignity. (2015). Five wishes. Retrieved from https://
with local or state policymakers may promote reforms
agingwithdignity.org/five-wishes
to increase funding for palliative care programs in hos- American Hospital Association. (2011). The cost of caring:
pitals, especially for patients of diverse backgrounds Drivers of spending on hospital care. Trendwatch.
(Giovanni, 2012; Hassmiller, 2013). Along with this, Retrieved from http://www.aha.org/research/reports/tw/
nurses need to expand their knowledge of the ACA’s 11mar-tw-costofcaring.pdf
required value-based purchasing program for Medicare Berwick, D. M., & Hackbarth, A. D. (2012). Eliminating waste
reimbursements and pending state and federal legislative in US health care. JAMA, 307(14), 1513–1516. doi:10.1001/
initiatives on palliative care. jama.2012.362
40 Policy, Politics, & Nursing Practice 17(1)

Brown, L. D. (2012). Stealing on insensibility: End-of-life pol- Duke, G., Yarbrough, S., & Pang, K. (2009). The Patient Self-
itics in the United States. Health Economics, Policy and Determination Act: 20 years revisited. Journal of Nursing
Law, 7(4), 467–483. doi:10.1017/S1744133112000254 Law, 13(4), 114–123. doi:10.1891/1073-7472.13.4.114
Buck, J. (2007). Reweaving a tapestry of care: Religion, nursing Elder, R. (1973). Dying in the U.S.A. International Journal of
and the meaning of hospice, 1945–1978. Nursing History Nursing Studies, 10(3), 171–184.
Review, 15, 113–145. Epstein, M. (2007). Legitimizing the shameful: End-of-life ethics
Callahan, D. (2005). Death: “The distinguished thing.”. and the political economy of death. Bioethics, 21(1), 23–31.
A Hastings Center Special Report Improving End-of-life Fairman, J., & Lynaugh, J. E. (1998). Critical care nursing: A
Care, 35(6), S5–S8. Retrieved from http://www.thehastings- history. Philadelphia, PA: University of Pennsylvania Press.
center.org/Publications/SpecialReports/Detail.aspx?id Fontana, A., & Keene, J. R. (2009). Death and dying in
¼1344 America. Malden, MA: Polity Press.
Callahan, D. (2011). End-of-life care: A philosophical or man- Fuchs, V. R. (2011). Who shall live? Health, economics and
agement problem? Journal of Law, Medicine & Ethics, 39(2), social choice 2nd expanded edition. Hackensack, NJ: World
114–120. doi:10.1111/j.1748-720X.2011.00581.x Scientific.
Callahan, D. (2012). US health care: The unwinnable war Giovanni, L. A. (2012). End-of-life care in the United States:
against death. Health, Economics, Policy and Law, 7(4), Current reality and future promise – A policy review.
455–466. doi:10.1017/S1744133112000242 Nursing Economics, 30(3), 127–134.
Cassell, E. J. (1974). Dying in a technological society. Hastings Goodman, D. C., Fisher, E. S., Wennberg, J. E., Skinner, J. S.,
Center Studies, 2(2), 31–36. Chasan-Taber, S., & Bronner, K. K. (2013). Tracking
Center to Advance Palliative Care. (2012). Growth of palliative improvement in the care of chronically ill patients: A
care in US hospitals 2012 snapshot. Retrieved from https:// Dartmouth Atlas brief on Medicare beneficiaries near the
media.capc.org/filer_public/e1/c9/e1c93c86-7fad-4aa6-b5e0- end-of-life. Retrieved from http://www.dartmouthatlas.org/
7757ef313da0/capc-growth-analysis-snapshot-2011.pdf publications
Centers for Disease Control and Prevention. (2015). Death and Gruenewald, D. A., & White, E. J. (2006). The illness experi-
mortality. Retrieved from http://www.cdc.gov/nchs/fastats/ ence of older adults near the end-of-life: A systematic
deaths.htm review. Anesthesiology Clinics of North America, 24(1),
Centers for Medicare & Medicaid Services. (2015a). Medicare 163–180. doi:10.1016/j.atc.2005.12.003
care choices Model awards [CMS fact sheet]. Retrieved from Gutierrez, K. M. (2012). Experiences and needs of families
https://www.cms.gov/Newsroom/MediaReleaseDatabase/ regarding prognostic communication in an intensive care
Fact-sheets/2015-Fact-sheets-items/2015-07-20.html unit Supporting families at the end-of-life. Critical Care
Centers for Medicare & Medicaid Services. (2015b). NHE fact Nurse Quarterly, 35(3), 299–313. doi:10.1097/CNQ.
sheet. Retrieved from https://www.cms.gov/Research- 0b013e318255ee0d
Statistics-Data-and-Systems/Statistics-Trends-and-Reports/ Halpern, S. D., & Emanuel, E. J. (2015). Can the United States
NationalHealthExpendData/NationalHealthAccounts buy better advance care planning? Annals of Internal
Historical.html Medicine, 162(3), 224–225.
Coustasse, A., Quiroz, T., & Lurie, S. G. (2008). To the bitter Hassmiller, S. B. (2013). The future of nursing: Lessons in
end: Disparities in end-of-life care. Journal of Hospital crafting successful policies. Policy, Politics, & Nursing
Marketing & Public Relations, 18(2), 167–185. doi:10.1080/ Practice, 14(2), 55–56. doi:10.1177/1527154413513174
15390940802232473 Hickman, S. E., Hammes, B. J., Moss, A. H., & Tolle, S. W.
Crippen, D. (2005). Medical treatment for the terminally ill: (2005). Hope for the future: Achieving the original intent of
The ‘risk of unacceptable badness.’ Critical Care, 9(4), advance directives. A Hastings Center Special Report
317–318. Improving End-of-life Care, 35(6), S26–S30. Retrieved
Cronin, J., Arnstein, P., & Flanagan, J. (2015). Family mem- from http://www.thehastingscenter.org/Publications/
bers’ perceptions of most helpful interventions during end- SpecialReports/Detail.aspx?id¼1344
of-life care. Journal of Hospice and Palliative Nursing, 17(3), Hoffmann, R. L. (2005). The evolution of hospice in America:
223–228. doi:10.1097/NJH.0000000000000151 Nursing’s role in the movement. Journal of Gerontological
Curtin, L. L. (2004). The coming gerontocracy: Social and eth- Nursing, 31(7), 26–34.
ical ramifications. Policy, Politics, & Nursing Practice, 5(3), Hofmann, B. (2002). Is there a technological imperative in
196–204. doi:10.1177/1527154404266944 health care? International Journal of Technology
Department of Health and Human Services (DHHS), Health Assessment in Health Care, 18(3), 675–689.
Care Financing Administration. (1983). Medicare program; Hogan, C. (2015). Spending in the last year of life and the impact
Hospice care. Federal Register, 48(243), 56008–56036. on hospice on Medicare outlays. A report by Direct Research,
Retrieved from https://www.cms.gov/Medicare/Medicare- LLC for the Medicare Payment Advisory Commission.
Fee-for-Service-Payment/Hospice/Downloads/1983-Final- Retrieved from http://medpac.gov/documents/contractor-
Rule.pdf reports/spending-in-the-last-year-of-life-and-the-impact-of-
Department of Health & Human Services (DHHS), hospice-on-medicare-outlays-rev.pdf
Administration on Aging (AoA), Administration for Hoge, V. M. (1948). The National Hospital Construction
Community Living. (2014). A profile of older Americans: Program. Journal of the National Medical Association,
2014. Retrieved from http://www.aoa.acl.gov/Aging_ 40(3), 102–106. Retrieved from http://www.ncbi.nlm.nih.
Statistics/Profile/2014/docs/2014-Profile.pdf gov/pmc/articles/PMC2616118/
Sopcheck 41

Institute of Medicine. (2015). Dying in America, improving qual- Miller, P. J., & Mike, P. B. (1995). The Medicare hospice bene-
ity and honoring individual preferences near the end-of-life. fit: Ten years of federal policy for the terminally ill. Death
Washington, DC: The National Academies Press. Studies, 19(6), 531–542.
Jennings, B., & Morrissey, M. B. (2011). Health care costs in Mohammed, S., & Peter, E. (2009). Rituals, death and the
end-of-life care and palliative care: The quest for ethical moral practice of medical futility. Nursing Ethics, 16(3),
reform. Journal of Social Work in End-of-life & Palliative 292–301. doi:10.1177/0969733009102691
Care, 7(4), 300–317. doi:10.1080/15524256.2011.623458 National Hospice and Palliative Care Organization. (2013).
Jenq, G., & Tinetti, M. E. (2013). Changes in end-of-life care NHPCO’s facts and figures: Hospice care in America.
over the past decade. JAMA, 309(5), 489–490. Retrieved from http://www.nhpco.org/sites/default/files/
Kaufman, S. R. (1998). Intensive care, old age, and the public/Statistics_Research/2013_Facts_Figures.pdf
problem of death in America. The Gerontologist, 38(6), Nedjat-Haiem, F. R., & Carrion, I. V. (2015). Assessing chal-
715–725. lenges in end-of-life conversations with patients utilizing a
Keegan, L., & Drick, C. A. (2011). A new place for death with public safety-net health care system. American Journal of
dignity: The golden room. Journal of Holistic Nursing, 29(4), Hospice and Palliative Care Medicine, 32(5), 528–536.
287–291. doi:10.1177/0898010111398662 doi:10.1177/1049909114530550
Keehan, S. P., Cuckler, G. A., Sisko, A. M., Madison, A. J., Neuberg, G. W. (2009). The cost of end-of-life care: A new
Smith, S. D., Stone, D. A., . . . ;Lizonitz, J. M. (2015). efficiency measure falls short of AHA/ACC standards.
National health expenditure projections, 2014–2024: Circulation Cardiovascular Quality and Outcomes, 2,
Spending growth faster than recent trends. Health Affairs, 127–133. doi:10.1161/CIRCOUTCOMES.108.829960
34(8), 1407–1417. doi:10.1377/hltaff.2015.0600 Newhouse, J. P., & Garber, A. M. (2013). Geographic vari-
Kellehear, A. (2008). Dying as a social relationship: A socio- ations in Medicare services. New England Journal of
logical review of debates on the determination of death. Medicine, 368(16), 1465–1468. doi:10.1056/NEJMp1302981
Social Science & Medicine, 66(7), 1533–1544. doi:10.1016/ Niederman, M. S., & Berger, J. T. (2010). The delivery of futile
j.socscimed.2007.12.023 care is harmful to other patients. Critical Care Medicine,
Kovner, C. T., & Lusk, E. (2012). Introduction: How can we 38(10), S518–S522. doi:10.1097/CCM.0b013e3181f1cba5
afford to die? Nursing Economics, 30(3), 125–126. Oregon Health Authority, Public Health. (n.d). Death with dig-
Kubler-Ross, E. (1969). On death and dying: What the dying nity act. Retrieved from https://public.health.oregon.gov/
have to teach doctors, nurses, clergy and their own families. ProviderPartnerResources/EvaluationResearch/Deathwith
New York, NY: Macmillan Publishing Company. DignityAct/Pages/index.aspx
Martins, C., & Basto, M. L. (2011). Relieving the suffering of Ortman, J. M., Velkoff, V. A., & Hogan, H. (2014). An aging
end-of-life patients. A grounded theory study. Journal of nation: The older population in the United States (US Census
Hospice & Palliative Nursing, 13(3), 161–171. doi:10.1097/ Bureau Report No. P25-1140). Retrieved from http://www.
NJH.0b013e31820a95dd census.gov/library/publications/2014/demo/p25-1140.html
Masci, D. (2013). To end our days: The social, legal and political Patient Protection and Affordable Care Act, 42 U.S.C. § 3021
dimensions of the end-of-life debate. Retrieved from http:// (2010).
www.pewforum.org/2013/11/21/to-end-our-days/ Patient Self Determination Act (PSDA) 1990, 42 U.S.C. § 4751
McCabe, M. S., & Storm, C. (2008). When doctors and (1990).
patients disagree about medical futility. Journal of Perry, J. E., & Stone, R. C. (2011). In the business of dying:
Oncology Practice, 4(4), 207–209. Questioning the commercialization of hospice. Journal of
McHugh, M. E., Arnold, J., & Buschman, P. R. (2012). Law, Medicine & Ethics, 39(2), 224–234. doi:10.1111/
Nurses leading the response to the crisis of palliative care j.1748-720X.2011.00591.x
for vulnerable populations. Nursing Economics, 30(3), Pew Research Center, Religion & Public Life Project. (2013).
140–147. Views on end-of-life medical treatments. Retrieved from
Medicare Payment Advisory Commission. (2002). Report to the http://www.pewforum.org/2013/11/21/views-on-end-of-life-
Congress Medicare beneficiaries’ access to hospice. Retrieved medical-treatments/
from http://www.medpac.gov/documents/contractor- Pizzo, P. A. (2015). The doctor: For life and at the end-of-life.
reports/report-to-the-congress-medicare-beneficiaries’- Annals of Internal Medicine, 162(3), 228–229. doi:10.7326/
access-to-hospice-(may-2002).pdf?sfvrsn=0 M14-2399
Medicare Payment Advisory Commission. (2014). Report to the Rothberg, M. B., Cohen, J., Lindenauer, P., Maselli, J., &
Congress: Medicare Payment Policy (March 2014), Chapter Auerbach, A. (2010). Little evidence of correlation between
12 Hospice services. Retrieved from http://medpac.gov/ growth in health care spending and reduced mortality. Health
documents/reports/mar14_entirereport.pdf Affairs, 29(8), 1523–1531. doi:10.1377/hlthaff.2009.0287
Medicare Payment Advisory Commission. (2015). Report to the Sabatino, C. P. (2010). The evolution of health care advance
Congress: Medicare Payment Policy (March 2015), Chapter planning law and policy. The Milbank Quarterly, 88(2),
12 Hospice services. Retrieved from http://www.medpac. 211–239.
gov/documents/reports/mar2015_entirereport_revised.pdf? Schneiderman, L. J., Jecker, N. S., & Jonsen, A. R. (1990).
sfvrsn¼0 Medical futility: Its meaning and ethical implications.
Meier, D. E. (2011). Increased access to palliative care and Annals of Internal Medicine, 112(12), 949–954.
hospice services: Opportunities to improve value in health Sessanna, L. (2010). End-of-life care needs and prefer-
care. The Milbank Quarterly, 89(3), 343–380. ences among independent community dwelling older adults
42 Policy, Politics, & Nursing Practice 17(1)

65 years or older. Journal of Hospice and Palliative Nursing, Wholihan, D. J., & Pace, J. C. (2012). Community discussions:
12(6), 6360–368. doi:10.1097/NJH.0b013e3181f0cd35 A vision for cutting the costs of end-of-life care. Nursing
Smith, T. J., & Cassel, J. B. (2009). Cost and non-clinical out- Economics, 30(3), 170–178.
comes of palliative care. Journal of Pain and Symptom World Health Organization (WHO), WHO Expert Committee
Management, 38(1), 32–44. doi:10.1016/j.painsymman. on Cancer Pain Relief and Active Supportive Care. (1990).
2009.05.001 Cancer pain relief and palliative care. Retrieved from http://
Soros, G. (1999). Reflections on death in America. The Hospice apps.who.int/iris/bitstream/10665/39524/1/
Journal, 14(3–4), 205–215. WHO_TRS_804.pdf
Teno, J. M., & Connor, S. R. (2009). Referring a patient and Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M. E.,
family to high-quality palliative care at the close of life. “We Maciejewski, M. L., Earle, C. E., . . . ;Prigerson, H. G.
met a new personality . . . with this level of compassion and (2009). Health care costs in the last week of life:
empathy. JAMA, 301(6), 651–659. Associations with end-of-life conversations. Archives of
Teno, J. M., Gozalo, P. L., Bynum, J. P. W., Leland, N. E., Internal Medicine, 169(5), 480–488. doi:10.1001/archin
Miller, S. C., Morden, N. E., . . . ;Mor, V. (2013). Change in ternmed.2008.587.
end-of-life care for Medicare beneficiaries: Site of death,
place of care, and health care transitions in 2000, 2005
and 2009. JAMA, 309(5), 470–477. doi:10.1001/jama.2012. Author Biography
207624
Janet Sopcheck received a Master of Arts degree in nur-
Wald, F. S., Foster, Z., & Wald, H. J. (1980). The hospice
sing from New York University. She is presently a PhD
movement as a healthcare reform. Nursing Outlook, 28(3),
student (dissertation phase) in the Christine E. Lynn
173–178.
College of Nursing at Florida Atlantic University in
Wallace, C. L. (2015). Family communication and decision
Boca Raton, Florida and also is employed as an assistant
making at the end of life: A literature review. Palliative
professor in a BSN program at a college in Southeast
and Supportive Care, 13(3), 815–825. doi:10.1017/S1478951
Florida.
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