End-of-Life Care and the Elderly

December 2, 2008
Harvey M. Chochinov, MD, PhD
Volume 25, Issue 14
Relevant Topics
Every life ends with death. For the elderly, death is the end of a long life that has been
shaped by personal history and world events, various relationships, well-set personality
characteristics and, of course, happenstance. Each of these, in addition to the specific
circumstances that herald death, shapes the experience of dying in old age.

Death is more universal than life: everyone dies but not everyone lives.

A. Sachs

Every life ends with death. For the elderly, death is the end of a long life that has been
shaped by personal history and world events, various relationships, well-set personality
characteristics and, of course, happenstance. Each of these, in addition to the specific
circumstances that herald death, shapes the experience of dying in old age.
Unfortunately, the particularities of end-of-life care for the elderly are often overlooked.
The specific challenges they face, the losses they incur, and the transitions they
encounter can be difficult to address and often go unrecognized. As a consequence,
their sense of dignity and quality of life may be undermined, and suffering mounts as life
draws to a close.

CASE VIGNETTE
Professor M is a 78-year-old man with end-stage lung cancer. He had been a prominent
university professor. His career had been marked by many successes and with the
acknowledgments that often accompany outstanding achievement. As his illness
progressed and he became more disabled, he found himself increasingly unable to
maintain his usual work routine. His children had long since grown, and a close friend
and colleague had recently passed away. In spite of his wife’s unwavering support and
encouragement, he had become more and more despondent and withdrawn. While fully
aware of the gravity of his medical condition, he found himself preoccupied with a lack
of sense of purpose or meaning. In the face of such “emptiness,” while he was not
actively suicidal, he indicated that life was beginning to feel rather pointless.

The principles of palliative care

Palliative care is an approach that “improves the quality of life of patients and their
families facing the problems associated with life-threatening illness through the
prevention and relief of suffering by means of early identification and impeccable
assessment and treatment of pain and other physical, psychosocial, and spiritual
problems.”1

The core principles of palliative care include a focus on the patient and the family; active
management of distressing symptoms; total, individualized care of the patient; an
interdisciplinary team approach; integration of the physical, psychological, and spiritual
aspects of care; supporting family members throughout the patient’s illness and in their
own bereavement; and offering support to the patient so that he or she may live as
actively as possible until death.2,3

There is growing recognition that a palliative approach should be initiated as early as

possible. This approach is meant to become more dominant as cure or life-sustaining
options become less viable. For the elderly, palliation and therapeutic nihilism are not to
be mistaken for one another. This can be problematic for vulnerable patients, including
the elderly (Figure).4 Findings from the Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatments (SUPPORT), for example, indicate
that older age is associated with lower resource intensity and less aggressive treatment,
including more decisions to withhold life-sustaining treatment.5

There is also evidence that older adults are less likely to receive adequate pain
management and are less likely to be referred for palliative care services. 6-8 For
marginalized populations, comfort measures are sometimes misconstrued as a
substitute for other health care options.4 Palliative care is not about giving up; rather,
palliative care is about never shirking responsibility to assuage patient distress and
suffering. As such, it should be integrated in a seamless way with all treatment services
for the elderly. It should be an integral part of geriatric medicine, which strives to provide
the best possible quality of life for, and to meet the unique needs of, older adults and
their families.

End-of-life care for the elderly requires an understanding of not only the inherent
physical changes that occur with aging but also the influence of social conditions,
culture, and individual life experiences and personality. Attempting to understand the
experience of dying outside the context of the wholeness of life is equivalent to trying to
comprehend the essence of life while excluding notions of vulnerability and mortality.
To understand the impact of dying on the elderly, one must consider their history and
the emotional, social, and spiritual context in which they live. Age provides experience,
which is perhaps why some studies have reported that older adults have a different
outlook on life and death, display better mental well-being, and have adaptive strengths
developed over a long life.9,10 Furthermore, multiple losses may have profound impact on
a person’s identity, sense of self, and quality of life. 11 These losses may touch all
aspects of an individual’s end-of-life experience.

CASE VIGNETTE
Professor M’s cancer was predated by several years of functional deterioration and
debility, secondary to COPD. The cancer diagnosis, along with the recent death of a
good friend and colleague, resulted in feelings of grief, periods of despondency, and
mounting frustration with his perceived lack of productive living. On examination, which
took place a few weeks before his death, he was bedridden and expressed feelings of
helplessness and hopelessness and a wish for death to come quickly. He denied any
intent to take his own life, and while his physical comfort was relatively good, his
emotional and existential suffering were considerable. Although he still appreciated his
wife’s company, he was worried that he would become a burden to her and his other
health care providers.
Physical issues
The physical consequences of aging provide a necessary backdrop to understanding
the psychosocial dimensions of end-of-life care. The elderly often experience a variety
of physical conditions of varying severity. In one study, elderly patients with advanced
cancer reported a median of 11 distressing symptoms. 12 In another study, older adults
(65 or older) with cancer reported 3 or more comorbid conditions. 13 Thus, while different
illnesses are associated with their unique disease trajectories, the elderly may be
plagued by long-term frailty, either predating or accompanying a life-threatening
condition. Long-term disability and dependency can diminish functional capacity and set
the stage for emotional, spiritual, and existential distress.14-16

Psychological issues
There is a great deal of evidence that shows the consequences of unrelieved symptoms
and loss of dignity, poor quality of life, and suffering. 14-16 Similarly, the association
between unmet physical, spiritual, and existential needs and psychological distress has
been well articulated.17,18 Distress can become so overwhelming as to engender a
genuine desire for early death. People who covet death, even toward the end of life,
often report significant pain, lack of social support and, most significantly, major
depression.14,19 Nearly 60% of patients who express an ardent wish to die meet
diagnostic criteria for major depression.14 Approximately 10% to 25% of adults
experience depression within the context of palliative care.19,20

Diagnosing depression in the elderly is fraught with additional challenges, including the
lack of somatic symptom specificity, along with a frequent reticence to volunteer their
feelings of depression as readily as younger patients.21,22 It is little wonder that
depression in older patients, particularly patients near the end of life, often goes
unrecognized and undertreated.

Anxiety among the elderly may derive from a variety of sources. On the one hand, it
may be a manifestation of other conditions such as depression, delirium, dementia, or
underlying medical complications.23 With regard to the latter, in the palliative care
setting, anxiety can signal impending cardiac or respiratory decompensation, pulmonary
embolism, an electrolyte imbalance, or dehydration. On the other hand, anxiety may
result from psychological or existential challenges, such as fear of isolation or
abandonment, dependency, disability, and death itself. 24

Some studies suggest that death anxiety may decrease with age. Others report that
although the elderly are more accepting of the finiteness of life and are able to put it into
the context of the wholeness of life, fear of dying may actually increase with age.25-
27 Information that demystifies the experience of dying and addresses anticipated

concerns that may arise during a terminal course of illness has been found to alleviate
distress toward the end of life.
Existential and spiritual issues

Gerontological theorists have identified finding purpose and meaning in life as key
developmental tasks facing the elderly.28 Both of these are facets of spirituality and are
important issues for the elderly facing death. In fact, the ability to find or sustain a
meaningful life is considered to be a strong buffer against despair at the end of
life.29 The results from a study by Moadel and colleagues30 show that patients with
cancer expressed a need for help in overcoming fear, finding hope and meaning in life,
finding spiritual resources, and having someone to talk with about the meaning of life
and death. However, 25% to 51% of the participants indicated that their spiritual needs
were not being met.

Spiritual and existential distress has been shown to correlate with loneliness,
depression, and anxiety.31,32 The connections between spirituality, meaning, and dignity
have been examined within the context of aging. For older adults, notions of dignity are
intimately tied to being able to serve a purpose, feel important, feel involved, and have a
sense of belonging.33 Our study group has examined the issue of dignity from the
vantage point of patients approaching death. On the basis on these studies, we have
developed an empirical model of dignity for patients at the end of life (Table).34 The
Dignity Model suggests that a person’s perception of dignity is related to and influenced
by 3 major areas:

• Illness-related concerns derive from or are related to the illness itself, and either
threaten to or actually do impinge on a patient’s sense of dignity.
• The dignity-conserving repertoire consists of those internally held and socially
mediated approaches a person uses to maintain a sense of dignity.
• The social dignity inventory refers to external environmental factors that can
strengthen or undermine the quality of interactions with others and, thereby, a sense of
dignity.

On the basis of the empirical Dignity Model, our research group has developed a brief,
individual therapeutic intervention that we call dignity therapy. 35 Dignity therapy invites
patients to address issues, recall memories, and share reflections, which they may wish
to offer those they are about to leave behind. Typically, patients share life stories; high-
light their values; speak about how they wish to be remembered, their most important
accomplishments, hopes, and dreams for loved ones; and provide advice or guidance
for important people in their lives. These sessions are tape-recorded, with the therapist
helping the patient organize and construct the conversations. Dignity therapy typically
comprises 1 or 2 sessions of 60 to 90 minutes each. These sessions are transcribed
verbatim and then edited to create a cohesive narrative. The patient receives this
“generativity document,” which in most instances is bequeathed to a loved one.

In an initial pilot study of 100 terminally ill, mostly elderly patients, 91% reported feeling
satisfied with the experience, 81% found it helpful for their family, 76% said that it
heightened their own sense of dignity, 68% reported an increased sense of purpose,
and 67% reported a improved sense of meaning. Symptoms of depression and suffering
were also reduced.35

CASE VIGNETTE
Based on Professor M’s predominant depressed mood and loss of interest in most
activities, along with a certain element of self-deprecation, a trial of psychostimulant
medication was initiated. These medications have a fast onset of action and are often
energizing, making them particularly appropriate in the context of end-of-life care.36 The
patient, in consultation with his family, was also offered a trial of dignity therapy. This
gave him the opportunity to speak about his previous scholarly passions and life
achievements and to engage, to a lesser extent, in some life review. For the time he
was well enough to participate, this approach seemed to engender a sense of meaning
and purpose. When the final “generativity document” was read in its entirety (a standard
part the dignity therapy protocol), he and his wife thought that it had “captured his
essence.”

Dignity-conserving care
Patients approaching death anticipate the loss of all they know and love. For the elderly,
this can be marked by a shattered sense of self. The “ABCDs” of dignity-conserving
care, namely attitude, behaviors, compassion, and dialogue, provide a framework that
embraces core values of medical professionalism, such as humanity, kindness, and
respect.37 For all patients, particularly the frail elderly, the application of this framework
as a means of staving off end-of-life distress can complement any treatment.

Attitude emphasizes the notion that our view of the patient influences the way he sees
himself. Patients look to their care provider for affirmation or acknowledgment of
continued worth. People near the end of life, the young as well as the old, maintain the
wish to be seen in terms of who they are or who they once were.

Behaviors refers to how health care providers interact with patients. Even small cues,
such as not being fully attentive or assuming one knows how the patient wishes to be
addressed, can further assault a patient’s sense of self. All behavior toward the elderly
patient should be predicated on understanding that patients need to feel accepted as
human beings and individuals, not just as objects of medical interventions.

Compassion refers to a deep awareness of the suffering of another, coupled with the
wish to relieve it. Compassion begins with the humble realization that each and every
one of us is vulnerable. In caring for the elderly, it is especially important not to lose
touch with the fact that, death notwithstanding, aging and disability are inevitable. A not-
so-subtle reminder of this comes from the disability community, where the term “TAB” is
often used to refer to the Temporarily Able-Bodied.

Dialogue underscores the importance of conversations that acknowledge personhood. It

can be as simple as finding out who the patient is, or asking what needs to be known to
deliver the best care possible.
In palliative care, novel psychotherapeutic approaches based on existential themes
such as meaning, purpose, and dignity are showing great promise in their ability to
diminish suffering and enhance the will to live. Perhaps being mindful of these issues in
the context of providing care to the elderly could yield similar results.

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Evidence-Based References
Burt J, Raine R.The effect of age on referral to and use of specialist palliative care
services in adult cancer patients: a systematic review. Age Ageing. 2006;35: 469-476.
Tornstam L. Caring for the elderly: introducing the theory of gerotranscendence as a
supplementary frame of reference for caring for the elderly. Scand J Caring Sci.
1996;10:144-150.