Dying, dignity, and new horizons in palliative End-of-life care

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Palliative care practitioners are now better able than ever before to ameliorate end-of-life symptom distress. What remains less developed, however, is the knowledge base and skill set necessary to recognize, assess, and compassionately address the psychosocial, existential, and spiritual aspects of the patient's dying experience. This review provides an overview of these areas, focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric challenges in end-of-life care is complemented with a list of resources for readers wishing to explore this area more extensively. The experience of spiritual or existential suffering toward the end of life is explored, with an examination of the conceptual correlates of suffering. These correlates include: hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. An empirically-derived model of dignity is described in some detail, with practical examples of diagnostic questions and therapeutic interventions to preserve dignity. Other interventions to reduce existential or spiritual suffering are described and evidence of their efficacy is presented. The author concludes that palliative care must continue to develop compassionate, individually tailored, and effective responses to the mounting vulnerability and increasingly difficult physical, psychosocial, and spiritual challenges facing persons nearing the end of life.


Dying, Dignity, and New Horizons in
Palliative End-of-Life Care
Harvey Max Chochinov, OM, MD, PhD, FRCPC
ABSTRACT Palliative care practitioners are now better able than ever before to ameliorate end-
of-life symptom distress. What remains less developed, however, is the knowledgebase and skill set
necessary to recognize, assess, and compassionately address the psychosocial, existential, and
spiritual aspects of the patient’s dying experience. This review provides an overview of these areas,
focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric
challenges in end-of-life care is complemented with a list of resources for readers wishing to explore
this area more extensively. The experience of spiritual or existential suffering toward the end of life is
explored, with an examination of the conceptual correlates of suffering. These correlates include:
hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. An
empirically-derived model of dignity is described in some detail, with practical examples of diagnostic questions and therapeutic interven-
tions to preserve dignity. Other interventions to reduce existential or spiritual suffering are described and evidence of their efficacy is
presented. The author concludes that palliative care must continue to develop compassionate, individually tailored, and effective responses
to the mounting vulnerability and increasingly difficult physical, psychosocial, and spiritual challenges facing persons nearing the end of life.
(CA Cancer J Clin 2006;56:84–103.) © American Cancer Society, Inc., 2006.
Gerasim was the only one who understood him. It was a comfort when Gerasim sat with him sometimes the whole
night through. . . Gerasim was the only one who did not lie; everything he did showed that he alone understood
what was happening, and saw no need to conceal it. . . and so the relationship was a comfort to him.
—From “The Death of Ivan Ilyich,” Leo Tolstoy
Palliative care has matured over recent years, with little doubt that end-of-life care providers are better positioned
to address various sources of symptom distress than ever before. It is also clear that the distinction between somatic
distress and psychological or spiritual disquietude becomes less clear and increasingly entangled as death draws near.
Yet, there is an inclination for care providers to parse these out, focusing on those things that seem within our grasp
to attenuate, while neglecting those we sense are beyond reach. There is, however, growing awareness in palliative
care that patients must not only be made to feel more comfortable, but more broadly, provided with comfort.
Although the distinction may appear subtle or merely semantic, it is in fact the difference between technically
competent symptom management versus a holistic approach to end-of-life care—an approach that encompasses the
psychosocial, existential, and spiritual aspects of the patient’s experience.
Providing comfort to dying patients, however, can prove difficult. There are dimensions of suffering or personal anguish
that are not readily accessible or even necessarily malleable.
As Ilyich’s pantry boy intuitively understood, in these
instances, comfort is often conveyed by a committed presence, various forms of affirmation, compassion and innumerable
acts of kindnesses. Within the palliative care literature, these aspects of care are recently being described in terms of concepts
such as meaning, purpose, dignity, and spiritual or existential well-being. Care that includes these components of attending to
patients, combined with the best of modern medicine and symptom management techniques, provides an opportunity to
This work was supported by the National Cancer Institute of Canada, the Canadian Cancer Society, and the Canadian Institutes for Health Research.
Dr. Chochinov is Canada Research
Chair in Palliative Care, Professor,
Department of Psychiatry, University
of Manitoba, Winnipeg, Manitoba,
Canada; and Director, Manitoba Pal-
liative Care Research Unit, Cancer
Care Manitoba, Winnipeg, Mani-
toba, Canada.
This article is available online at
Palliative End-of-Life Care
A Cancer Journal for Clinicians
achieve dignity-conserving end-of-life care.
This review article invites readers to explore these
particular horizons of palliative care, to help them
fulfill their role as competent and compassionate
providers of care for patients with life-threatening
The modern hospice movement began with
Dame Cicely Saunders, whose philosophy of
palliation included holistic care, along with a
progressive and modern approach to the med-
ical management of end-of-life symptoms.
Dame Saunders opened St. Christopher’s Hos-
pice, the first residential hospice, in 1967.
fate would have it, she died in St. Christopher’s
Hospice at age 87 years, on July 14, 2005.
Palliative care offers specialized treatment to
people whose illness is no longer considered cur-
able. Its primary goals are to provide comfort and
care for those with life-limiting illnesses and their
families, so that patients are able to die peacefully
in the setting of their choice— often their own
home—while receiving all necessary nursing,
medical, psychosocial, and spiritual care.
World Health Organization (WHO) defines pal-
liative care as “an approach that improves the
quality of life of individuals 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 problems, physical, psychosocial and
Embedded within the WHO defini-
tion is a commitment to relieving pain and other
distressing symptoms, the affirmation of life while
regarding dying as a normal process, an intent to
neither hasten nor postpone death, an integration
of psychological and spiritual aspects of patient
care, the provision of support to help patients live
as actively as possible until their death, with sup-
port being provided to help families cope during
their loved ones’ illnesses and into their own
bereavement. Whenever possible, palliative care
endeavors to enhance the quality of life of patients
as they move toward death. Palliative care can be
applied at all stages of life-threatening disease and
should intensify once cure is no longer deemed
Although dying is part of the human con-
dition, dying poorly ought not to be. Inves-
tigators have begun to look at various
domains of what constitutes a “good death.”
A meaningful dying process is one during
which the patient is physically, psychologi-
cally, spiritually, and emotionally supported
by his or her family, friends, and caregivers.
According to the Institute of Medicine, a
good death is one that is “free from avoidable
distress and suffering for patient, family and
caregivers, in general accord with patient’s
and family’s wishes, and reasonably consis-
tent with clinical, cultural, and ethical stan-
Weisman described four criteria for
what he referred to as “an appropriate
death”: internal conflicts, such as fears about
loss of control, should be reduced as much as
possible; the individual’s personal sense of
identity should be sustained; critical relation-
ships should be enhanced or at least main-
tained, and if possible, conflicts resolved; and
the person should be encouraged to set and
attempt to reach meaningful, albeit limi-
ted, goals such as attending a graduation, a
wedding, or the birth of a child, as a way
to provide a sense of continuity into the
On the basis of qualitative studies, Singer, et
al. determined the primary concerns of patients
regarding their impending deaths.
These in-
cluded receiving adequate pain and symptom
management, avoiding inappropriate prolonga-
tion of dying, achieving a sense of control,
relieving burden, and strengthening relation-
ships with loved ones. Creating every oppor-
tunity to bolster or enhance these relationships
is in keeping both with patient wishes and
fundamental principles of palliative care. In a
recent Institute of Medicine report entitled
“Approaching Death: Improving Care at the
End of Life,” several domains of quality end-
of-life care were identified: overall quality of
life, physical well-being and functioning,
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 85
achieving a sense of spiritual peace and well-
being, patient perception of care, and family
well-being and functioning.
These definitions of palliative care and descrip-
tions of a good death would suggest great sensi-
tivity to the psychosocial, existential, and spiritual
aspects of patient well-being. Yet, in spite of this,
there are aspects of end-of-life distress that are not
routinely assessed, let alone effectively treated or
managed. Recent evidence suggests that as pa-
tients with cancer or acquired immunodeficiency
syndrome (AIDS) enter the advanced stages of
illness, the burden of both physical and psycho-
logical symptoms becomes staggering. Physical
concerns such as pain, dyspnea, and constipation
have been reported to be less prevalent in patients
with advanced cancer or AIDS than symptoms
such as worrying, nervousness, lack of energy,
insomnia, and sadness.
Over the last decade, much work has been
done to establish the incidence and prevalence of
psychiatric issues among patients nearing death.
For example, anxiety disorders in terminally ill
cancer and AIDS patients ranges from 15% to
with some studies indicating a higher
prevalence of mixed anxiety and depressive
symptoms in cancer patients rather than anxiety
The prevalence of anxiety appears to
increase with advancing disease and mounting
deterioration in the patient’s physical status.
patients become sicker, their anxiety may include
fears about the disease process, the clinical course,
possible treatment outcomes, and death. In addi-
tion, particularly in patients with AIDS, anxiety
may result from fear of increasing social stigma as
their medical illness deteriorates and becomes
more evident.
Among patients who are terminally ill,
anxiety can occur within the context of an
adjustment disorder (characterized by a re-
sponse that is considered excessive and im-
pairs social or occupational functioning),
with anxious mood alone or in combination
with depressed mood; it can be a disease-
related or treatment-related condition or an
exacerbation of a pre-existing anxiety disor-
Adjustment disorder with anxiety
is often related to the existential crisis sur-
rounding the uncertainties that accompany a
life-limiting prognosis.
Patients confront-
ing a terminal illness who have pre-existing
anxiety disorders are at risk for reactivation
of their symptoms. Symptoms such as pain or
dyspnea may reactivate a generalized anxi-
ety or panic disorder, whereas patients with
a history of phobias—especially fear of
death—may manifest anxiety symptoms re-
quiring both medication and emotional sup-
port. Posttraumatic stress disorder may be
reactivated in dying patients if their illness
experience resonates with prior near-death
encounters or other significant trauma.
All dying patients will experience times of
sadness as a normal part of coming to terms with
life drawing to a close. Approximately 25% of all
cancer patients, however, will experience severe
depressive symptoms, with the prevalence in-
creasing with higher levels of disability, advanced
illness, and pain.
19 –22
Although concern is often
raised about the nonspecificity of somatic symp-
toms in reaching a diagnosis of depression, clinical
wisdom and experience suggest that greater diag-
nostic emphasis should be placed on psychologi-
cal symptoms, such as depressed mood, loss of
interest, helplessness, hopelessness, excessive guilt,
feelings of worthlessness, and desire for death, as
opposed to physical criteria.
screening strategies as simple as asking the patient
if they are depressed “most of the time” have
shown good diagnostic sensitively and specificity,
depression continues to be overlooked among
patients who are terminally ill. This further adds
to their burden of suffering and undermines their
quality of life.
Although a complete overview of psychi-
atric disorders in end-of-life care is beyond
the scope of this review, several monographs
and key references are readily available (Ta-
ble 1). Psychiatric diagnoses, however, pro-
vide too narrow a framework to contain the
broad spectrum of end-of-life distress.
More ubiquitous aspects of suffering—in-
cluding psychological, existential, or spiritual
distress—are not necessarily well understood
or researched, nor do they necessarily engen-
der a well-considered response. Distress of
Palliative End-of-Life Care
A Cancer Journal for Clinicians
this kind may express itself as an overwhelm-
ing sense of hopelessness, existential or spir-
itual angst; loss of sense of dignity; sensing
oneself a burden to others; or a waning of
one’s will to live and a growing desire for
death or wish to no longer carry on living.
What follows is an overview of the empirical
work that has explored these facets of the
dying experience.
Good palliative care practice obliges us to ac-
knowledge the innate existential nature of distress
that accompanies the experience of dying people.
Rooted as we are in a contemporary biomedical
model of disease, it is tempting to direct most,
perhaps all, of our attention to the diagnosis and
alleviation of physical symptom distress. Yet
within one-to-one interactions with dying pa-
tients, few care providers remain unaware that
there are aspects of distress that defy even the
most sophisticated of medicinal or technological
modalities. Something else is at play and we
know it, because it evokes empathy toward our
patient’s illness experience and resonates with a
sense of our common humanity.
Holistic care acknowledges that each individ-
ual is an integrated whole, more than the simple
sum of physical and psychological “parts,” a unity
or total person who is situated in a social world
that includes the ill person and caregivers.
ineffable in our relationships with patients and
their families derives from our personal and pro-
fessional response to the confluence of existential,
spiritual, physical, and psychosocial concerns that
arise toward the time of death. To be sure, these
sources of distress are intricately interconnected,
although the independent effect of spiritual con-
cerns on quality of life has been empirically dem-
onstrated. Using the spirituality subscale of the
Functional Assessment of Chronic Illness Ther-
apy (FACIT-Sp) Scale, Brady and colleagues
found a unique positive association between spir-
ituality and quality of life that equaled the associ-
ation between physical well-being and quality of
life in an ethnically-diverse sample of 1,610
cancer patients.
Despite the artificiality of pars-
ing spiritual or existential distress from physical
and psychosocial concerns, doing so provides an
opportunity to more fully explore the meaning of
spiritual or existential “suffering.”
TABLE 1 Additional Palliative Care/Psychiatry References
Akech I, Okuyama T, Sugawara Y, et al. Major depression, adjustment disorders, and traumatic stress disorder in terminally ill cancer patients: associated and predictive
factors. J Clin Oncol 2004;22:1957–1965.
Block SD. Psychological considerations, growth, and transcendence at the end of life. The art of the possible. JAMA 2001;285:2898.
Breitbart W. Diagnosis and management of delirium in the terminally ill, in Portenoy R, Bruera E, eds. Topics in Palliative Care, Volume 5. New York: Oxford University
Press; 1998:303.
Breitbart W, Marotta R, Platt MM, et al. A double-blind trial of haloperidol, chlorpromazine, and lorazepam in the treatment of delirium in hospitalized AIDS patients.
Am J Psychiatry 1996;153:231–237.
Breitbart W, Marotta R, Platt MM, et al. Delirium at the end of life: critical issues in clinical practice and research. JAMA 2000;284:2427–2429.
Breitbart W, Rosenfeld B, Passik S. Interest in physician-assisted suicide among ambulatory HIV-infected patients. Am J Psychiatry 1996;153:238–242.
Breitbart W, Bruera E, Chochinov H, Lynch M. Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer. J Pain Symptom Manage
Breitbart W, Gibson C, Chochinov HM. Palliative Care, in Levenson JL, ed. Textbook of Psychosomatic Medicine. Washington DC: American Psychiatric Publishing;
Chochinov HM, Breitbart W. Handbook of Psychiatry in Palliative Medicine. Oxford: Oxford University Press; 2000.
Emanual E, Fairclough D, Emanuel L. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA
Greenberg DB. Preventing delirium at the end of life: lessons from recent research. Primary care companion. J Clin Psychiatry 2003;5:62–67.
Holland JC. Psycho-oncology. New York: Oxford University Press; 1998:437–449.
Holland JC. Psychological care of patients: psycho-oncology’s contribution. American Cancer Society award lecture. J Clin Oncol 2003;21:253s–265s.
Meier D, Back A, Morrison S. The inner life of physicians and care of the seriously ill. JAMA 2001;286:3007–3014.
Nelson C, Rosenfeld B, Breitbart W, et al. Spirituality, religion, and depression in the terminally ill. Psychosomatics 2002;43:213–220.
Rosenfeld B, Krivo S, Breitbart W, Chochinov HM. Suicide, assisted suicide, and euthanasia in the terminally ill, in Chochinov HM, Breitbart W, eds. Handbook of
Psychiatry in Palliative Medicine. New York: Oxford University Press, 2000:51–62.
Roth A, Breitbart W. Psychiatric emergencies in terminally ill cancer patients. Hematol Oncol Clin North Am 1996;10:235–259.
Rousseau P. The art of oncology: when the tumor is not the target. Death denial. J Clin Oncol 2000;18:3998–3999.
Von Guten CF, Ferris FD, Emanuel LL. Ensuring competency in end-of-life care. Communication and relational skills. JAMA 2000;284:3051–3057.
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 87
Spirituality and Existentialism
Spirituality is variably understood, with one
comprehensive review of the health literature
counting 92 separate definitions.
These defi-
nitions were divided between seven major the-
matic categories, including: a relationship to
God, a spiritual being, a higher power, or a
reality greater than the self; not of the self;
transcendence or connectedness unrelated to a
belief in a higher being; existential, not of the
material world; meaning and purpose in life;
life force of the person, integrating aspect of the
person; and summative definitions that com-
bined multiple themes. Spirituality embodies a
sense of connectedness to a personal god or
higher force or power, and is considered a
broader construct than religion.
Some initial contemporary efforts have been
made to define spirituality from the perspective
of dying patients. Chao and colleagues asked
six Buddhist and Christian terminally ill cancer
patients in Taiwan what the essence of spiritu-
ality was to them. Ten themes in four broad
categories emerged: communion with self (self-
identity, wholeness, inner peace); communion
with others (love, reconciliation); communion
with nature (inspiration, creativity); and com-
munion with a higher being (faithfulness, hope,
Hermann noted that as in-depth
interviews with 19 hospice patients progressed,
many whose initial definitions of spirituality
related to God or other religious terms later
identified terms associated with meaning and
purpose or nature and acknowledged that spir-
ituality was part of their total existence.
McGrath interviewed 14 people living at
home in Australia with a prognosis of less than 6
months. She found that most did not seek explic-
itly religious comfort in response to their illness
and that there was a degree of eclecticism in the
religiospiritual concepts expressed by partici-
In a comparative study of cancer survi-
vors and hospice patients, McGrath concluded
that maintaining an intimate connection with life
through family, friends, leisure, home, and work
was just as important to individuals as transcen-
dent meaning-making, religious or otherwise.
Palliative care researchers have increasingly
recognized the importance of examining spir-
itual dimensions of end-of-life experience. Be-
tween 1994 and 1998, 6.3% of empirical
studies in palliative care journals included spir-
itual and religious variables, versus 1% of em-
pirical studies published in leading medical
journals. Of 1,117 empirical studies published
in five palliative medicine/hospice journals, re-
searchers measured spirituality using variables
such as spiritual well-being, meaning, or tran-
scendence (32%), followed by religious affilia-
tion (29%) and spiritual/religious services
provided (19%).
In our secular society, explicit or implicit reli-
gious connotations associated with the term spir-
ituality have been moderated such that many
definitions make no mention of God or a higher
power. Instead, the term evokes a sense of search-
ing or yearning for significance or meaning in
life. Existentialism is a body of thought originally
enunciated by philosophers such as Arthur
Schopenhauer, Soren Kierkegaard, Friedrich Ni-
etzsche, and Martin Heidegger. Existentialists ap-
preciate the individual’s experience of living and
acknowledge meaning, purpose, and value in ev-
eryday life. A psychotherapeutic orientation has
grown out of existential philosophy. It views
serious illness— especially life-threatening ill-
ness—as an opportunity for growth. Confronted
with the prospect of annihilation, patients’ life-
time assumptions about meaning and value may
be shattered by their daily illness experience. This
affords an opportunity, a moment of insight, to
re-evaluate life activities and to choose those that
add greatest meaning, purpose, and value in the
time left.
Distinguishing between the terms spir-
ituality and existentialism—particularly in the con-
text of palliative care—is perhaps less important
than recognizing the common ground between
the two terms: the human urge to imbue life with
purpose, meaning, and hope.
Spiritual and Existential Suffering
Spiritual suffering or pain may manifest itself
within various domains of the patient’s experi-
ence, be it physical (eg, intractable pain), psycho-
logical (eg, anxiety, depression, hopelessness),
religious (eg, crisis of faith), or social (eg, disinte-
gration of human relationships). However, it is
not possible to recognize spiritual pain on the
Palliative End-of-Life Care
A Cancer Journal for Clinicians
basis of symptoms alone. Rather, spiritual pain is
the combination of these aforementioned symp-
toms and characteristic behaviors, including: pa-
tients who are desperate to escape their situation;
patients with expectations of caregivers that are
impossible to meet; patients who continue to try
new therapies in the absence of any benefit; and
patients who require escalating doses of analgesics
and sedatives despite no apparent benefit, or even
when these measures are clearly counterproduc-
tive. These behaviors often evoke descriptions
such as “suffering” or “anguish,” which can help
identify this form of pain.
In a study of caregivers, hospital chaplains,
palliative care physicians, and pain specialists,
definitions of existential pain ranged from those
that stressed issues of guilt and religion (chap-
lains) to those that related to annihilation and
impending separation (palliative care physi-
cians). Although some pain specialists empha-
sized that living is painful, they concluded that
existential pain is most often used as a metaphor
for suffering.
According to McGrath,
who developed a
paradigm of spiritual pain from a qualitative
study of 12 survivors of hematological malig-
nancies, the notion of spiritual pain or suffering
includes: “. . .a sense of diffuse emotional/ex-
istential/intellectual pain directly related to the
meaninglessness created as a result of a break
with the expected/normal network of relation-
ships that function to connect one to life. A key
ingredient in that pain is the sense that the-
. . .experience with life is failing to meet the
individual’s needs, and thus the expected satis-
faction and meaning-making from life are not
Few researchers have studied the effect of
spiritual or existential well-being on dying pa-
tients’ senses of suffering, but those who have
report a protective effect against end-of-life
despair. Nelson, et al. studied the impact of
spirituality and religiosity on depressive symp-
toms in 162 patients dying of cancer or
Using the Functional Assessment of
Chronic Illness Therapy Spiritual Well-Being
(FACIT-Sp) Scale and the Hamilton Depres-
sion Rating Scale (HDRS), they demonstrated
a statistically significant negative association be-
tween HDRS scores and FACIT-Sp total
scores (
0.30, P 0.001), indicating that
individuals scoring higher on the spiritual mea-
sure were less depressed. In a sample of 160
hospitalized cancer patients admitted for termi-
nal care, McClain, et al.
assessed the relation-
ship between spiritual well-being, depression,
and end-of-life despair. The study demon-
strated significant negative correlations be-
tween spiritual well-being and desire for
hastened death (r 0.51, P 0.001), hope-
lessness (r 0.68, P 0.001), and suicidal
ideation (r 0.41, P 0.001). They con-
cluded that spiritual well-being offered some
protection against end-of-life despair, based on
the additional findings that depression was sig-
nificantly correlated with desire for hastened
death in patients low in spiritual well-being
(r 0.40, P 0.001), but not in those high in
spiritual well-being.
Similarly, McClain-Jacobson, et al.
the effect of afterlife beliefs on psychological
distress and end-of-life despair in 276 palliative
care cancer inpatients. Belief in an afterlife was
associated with lower levels of hopelessness (4.6
versus 7.9, P 0.001), desire for death (3.5
versus 5.4, P 0.027), and suicidal ideation
(12.0% versus 27.7%, P 0.029), which are
factors considered important in end-of-life de-
spair. Belief in an afterlife was not significantly
associated with depression or anxiety. When
spirituality levels were controlled for, the effect
of afterlife beliefs disappeared, suggesting that
spirituality has a more powerful effect on psy-
chological functioning than beliefs regarding an
If spiritual or existential well-being imbues
life with a sense of purpose or meaning, then it
follows that a lack of purpose or meaning may
lead to a disinvestment in life itself. Over the
last decade, researchers—recognizing the im-
portance of existential or spiritual issues for
dying patients— have begun to conceptually
parse out and examine the effect of hopeless-
ness, burden to others, loss of sense of dignity,
and loss of will to live on patients approaching
death. Greater understanding of the influence
of these issues on distress and despair will afford
opportunities to improved comfort and care
toward the end of life.
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 89
Intuitively, one might suspect that patients
whose medical prognosis is “hopeless” would
uniformly endorse a sense of hopelessness. Yet,
this is not supported by the empirical data. For
instance, in reporting existential distress among
162 terminally-ill Japanese hospice inpatients,
Morita, et al.
found that only 37% expressed
a sense of hopelessness. Other sources of dis-
tress included feeling a sense of dependency
(39%), meaninglessness in present life (37%),
feeling a burden to others (34%), loss of social
role functioning (29%), and feeling emotionally
irrelevant (28%).
Given that this was a group
of dying patients, it is clear that hope is based
on something other than prognosis, or, as stated
by Hockley,
it is a “concept that suggests a
greater emotional component than mere ex-
pectation, and is seen as an active process of
conscious and unconscious meaning.”
Several studies have shown that, among pa-
tients with advanced disease, severe or perva-
sive hopelessness tends to be confined to those
who are depressed or have expressed a genuine
desire for early death.
Breitbart, et al.
reported that, in a group of 92 patients in a
palliative care inpatient facility, 17% were clas-
sified as having a high desire for hastened death
and 16% met criteria for a current major de-
pressive episode. Desire for hastened death was
significantly associated with clinical depression
(P 0.001) and hopelessness (P 0.001), with
both providing independent, unique contribu-
tions to the prediction of desire for hastened
death. Chochinov, et al.
found that hopeless-
ness was more highly correlated with suicidal
ideation than was depression, thus providing an
important clinical marker for patients harboring
thoughts of early death.
This connection between hopelessness and
suicidal thinking begins to reveal the experien-
tial landscape of people approaching death. Be-
sides its connection with depression, loss of
hope— however that might be experienced by
someone facing a life-limiting illness—seems
closely aligned with a wish to die. This con-
clusion is supported by Wilson, et al.
reported that terminally ill patients who would
elect death-hastening measures, if legally avail-
able, were more likely than other participants
to express hopelessness, a loss of interest or
pleasure in activities, and a desire to die; they
were also more likely to have depressive disor-
ders. Similarly, Virik and Glare
reported that
among terminally ill patients requesting eutha-
nasia, half endorsed a sense of hopelessness.
In one study seeking to gain conceptual
clarity of the notion of hopelessness from dying
patients, Chochinov, et al.
reported that
within this patient population, hope was re-
lated to concepts of meaning and purpose. For
patients nearing death, maintaining hope was
intimately connected with a sense that life con-
tinued to serve some purpose or held meaning
enough to sustain their continued existence.
Similarly, Duggleby
reported that maintain-
ing hope was a way for terminally ill patients to
endure and cope with their suffering. For these
patients, hope was defined in terms of hope for
no more suffering, living each day, a peaceful
death, and hope for their families.
To “live
with hope,” palliative care patients had to
transform hope, which involved acknowledg-
ing life the way it is, searching for meaning and
positive reappraisal.
This conceptual clarifica-
tion is critical, in that it offers insight into the
potency of hopelessness as an experience that
can undermine a sense that life has ongoing
value or intrinsic worth. This clarity also has
implications regarding therapeutic options that
might engender a sense of meaning and pur-
pose for patients expressing overwhelming
hopelessness (see Opportunities for Interven-
tions to Reduce Suffering).
Other investigators have begun to make a
connection between hope, meaning, and pur-
pose. For example, in their study of Japanese
hospice patients, Morita, et al.
three factors—loss of autonomy, lowered self-
esteem, and hopelessness—in connection with
existential distress. Of note, “meaninglessness
in one’s present life” appeared within all three
factors, suggesting a conceptual conflation be-
tween hopelessness and meaning. Kissane and
have introduced the concept of
demoralization syndrome, in which the core
features consist of hopelessness, loss of mean-
ing, and existential distress. They suggest this
syndrome can be associated with chronic med-
Palliative End-of-Life Care
A Cancer Journal for Clinicians
ical illness, disability, bodily disfigurement, fear
of loss of dignity, social isolation, and feelings
of greater dependency on others or the percep-
tion of being a burden to others, especially
where there is a subjective sense of incompe-
tence. They further suggest that a sense of
impotence or helplessness will almost invari-
ably lead to a desire to die or suicidal ideation.
Finally, Lin and Bauer-Wu
conducted an
integrative literature review, examining the
psychospiritual well-being of terminally ill peo-
ple with advanced cancer. They identified 43
primary research studies, within which six ma-
jor themes emerged: self-awareness, coping and
adjusting effectively with stress, relationships
and connectedness with others, sense of faith,
sense of empowerment and confidence, and
living with meaning and hope. The conflation
of these latter terms—meaning and hope—
again speaks to their conceptual overlap. Pa-
tients with an enhanced sense of psychospiritual
well-being were reportedly better able to cope
effectively with the process of terminal illness
and to find meaning in the experience. Along
with family and social support, prognostic
awareness, and autonomy, “hope and meaning
in life” contributed to positive psychospiritual
well-being, whereas emotional distress, anxi-
ety, helplessness, hopelessness, and fear of death
detracted from it. This review, along with the
other studies cited, suggests that enhancing psy-
chospiritual well-being, in part, rests on under-
standing the nature of hope and the extent to
which loss of meaning and purpose can under-
mine a patient’s sense of life’s value or worth.
Interventional strategies sensitive to this exis-
tential landscape must target hopelessness to
effectively contribute to positive patient out-
Burden to Others
Self-perceived burden has been described as
“a multidimensional construct arising from the
care-recipient’s feelings of dependence and the
resulting frustration and worry, which then
lead to negative feelings of guilt at being re-
sponsible for the caregiver’s hardship.”
Among patients with life-threatening illness,
sensing oneself as a burden to others seems to
be an important theme related to quality of life,
optimal palliative care, and maintenance of dig-
nity at the end of life.
Personal or indi-
vidual autonomy— especially in Western
society—is often conflated with the notion of
being a whole person, so that dependency can
be seen or experienced as threatening the in-
tegrity of personhood itself. Therefore, a bad
death is frequently characterized by “feeling a
burden to others” and is often invoked in mat-
ters pertaining to suicide or requests for has-
tened death among patients with advanced
According to reports from family members
of patients who had died after having previ-
ously expressed a wish for hastened death, 58%
to 94% were distressed about being a burden to
Physicians who had been asked to
assist with death-hastening measures indicated
that patients’ concerns about being a burden to
others was a motivating factor in 41% to 75% of
56 –58
Among dying patients who ac-
tually killed themselves, feeling a sense of bur-
den to others was almost universal.
from Oregon indicates that 63% of patients
who received a hastened death under that
state’s Death with Dignity Act had expressed a
strong sense of having become a significant
burden to their family, friends, or caregivers.
The authors further report that this motivation
for death-hastening practices is becoming more
prominent over time.
Wilson, et al.
conducted one of the few
studies to directly examine the notion of bur-
den to others among a group of 69 patients
with advanced cancer. A sense of burden to
others was common in this group of patients:
39% reported a minimal to moderate concern
and 38% reported moderate to severe levels of
distress around being a burden to others,
whereas only 23% reported that they experi-
enced no sense of burden. Burden to others
had very little correlation with physical symp-
toms, somewhat higher correlations with
psychological symptoms, and the highest cor-
relations with existential issues, including loss
of dignity (r 0.49, P 0.01), hopelessness (r
0.46, P 0.01), and loss of control (r
0.45, P 0.01). They also reported modest,
significant correlations between burden to oth-
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 91
ers and desire for death and suicidal ideation.
Multiple regression modeling confirmed the
association between burden to others and dig-
nity, with dignity entering as the first predictor
variable of burden to others.
If dignity can be understood as deserving
honor, respect, or esteem,
its conceptual
overlap with burden to others suggests a self
perception wherein patients no longer consider
themselves worthy of these attributes. Sensing
they no longer have value, meaning, or pur-
pose—and therefore are unworthy of honor,
respect, or esteem—patients with advanced ill-
ness may perceive their neediness or depen-
dency as unfolding in a context shaped by an
inability to give anything in return. This per-
ception of needing to take, while feeling they
have little to give back, further clarifies the
psychological landscape of “sense of burden to
Loss of Sense of Dignity
Palliative care has been characterized as care
that “honors and protects those who are dying,
and conveys by word and action that dignity
resides in people.”
Most palliative care pro-
viders would claim that dignity is an overarch-
ing value or goal, which shapes the delivery of
service to dying patients and their families. For
some patients, a sense of dignity is indivisible
from their core being or essence. The notion of
“basic dignity” has been described as a universal
moral quality that is internally held and inalien-
able from life itself.
“Personal dignity,” on
the other hand, is frequently invoked in refer-
ence to the potential indignities of death and
Personal dignity is individualistic,
transient, and often tied to personal goals and
social circumstances. When individual auton-
omy is conflated with the notion of dignity, the
inability to maintain independence while dying
may be experienced as a fundamental loss of
dignity, undermining the value of life itself.
The term dignity has become highly politi-
cized and is frequently invoked as justification
for various end-of-life care practices and poli-
cies. In many circles, the term “death with
dignity” is synonymous with the right to as-
sisted suicide and euthanasia.
studies have reported that loss of dignity is very
closely linked to why patients have either
sought or, in some instances, received death-
hastening assistance.
62,69 –71
According to a US
survey of physician-assisted suicide and eutha-
nasia, loss of dignity was the reason cited by
physicians in 53% of cases where prescriptions
had been written for the purpose of hastening
death (second only to discomfort other than
pain in 79% of cases).
Historically, the topic of dignity has not
been extensively researched and has tended to
enter palliative care discourse in the context of
social policy, philosophical, or religious con-
siderations. Thus, although many palliative
caregivers purport to deliver care that preserves
dignity, little empirical data has been available
to guide them on how to achieve this particular
goal. Over the last decade, several studies have
examined some of the factors that might sup-
port, or undermine, a dying patient’s sense of
A qualitative study of dying
patients produced an empirically based model
of dignity in the terminally ill.
This model
provides insight into what influences a patient’s
wish to go on living in the face of their im-
pending death and establishes the foundation
for a model of palliative care, coined dignity-
conserving care.
This model provides therapeu-
tic direction for health professionals, advising
they pay heed to a broad range of physical,
psychological, social, and spiritual/ existential
issues that may affect individual patient percep-
tions of dignity.
The Dignity Model consists of three major
categories including: 1) illness-related issues per-
taining to bodily concerns or problems; 2)
dignity-conserving repertoire pertaining to the
patient’s psychological makeup and spiritual be-
liefs; and 3) the social dignity inventory, referring
to external influences affecting dignity (Figure
These categories refer to broad issues that
determine how individuals experience a sense of
dignity as death approaches. Each category con-
tains several carefully defined themes and sub-
themes, enhancing our understanding of dignity
considerations among the dying.
Illness-related concerns are issues that result
from the illness itself and threaten to, or actu-
ally do, impinge on the patient’s sense of dig-
Palliative End-of-Life Care
A Cancer Journal for Clinicians
nity. Their defining characteristic is that they
are mediated via the illness and are very specific
to the patient’s illness experience. The two
broad themes within this category consist of
“level of independence,” (which is determined
by an ability to maintain cognitive acuity, as
well as “functional capacity,” referring to the
ability to perform daily living tasks) and “symp-
tom distress.” Symptom distress is divided into
physical distress and psychological distress, with
the latter including uncertainty (the distress as-
sociated with the uncertainties of one’s health
status) and death anxiety (worry or fear specif-
ically associated with the process or anticipa-
tion of death and dying).
The dignity-conserving repertoire is comprised
of two major themes: dignity-conserving per-
spectives and dignity-conserving practices. The
former are internally held qualities or views of
one’s place in the world, and include the sub-
Y Continuity of self: the sense that the essence
of who one is continues to remain intact.
Y Role preservation: an ability to continue func-
tioning in usual roles as a way of maintaining
congruence with prior views of oneself.
Y Generativity/legacy: the sense that one will
leave behind something lasting and tran-
scendent of death.
Y Maintaining pride: the ability to maintain
positive self-regard in the face of diminish-
ing independence.
Y Maintaining hope: an ability to see life as
enduring, with sustained meaning or pur-
Y Autonomy/control: the sense that one can
influence or direct one’s life circumstances.
Y Acceptance: the internal process of resigning
oneself to changing life circumstances, in the
attempt to maintain one’s sense of dignity.
Y Resilience/fighting spirit: the mental determi-
nation some patients exercise to overcome
their illness-related concerns or optimize their
quality of life.
Dignity-conserving practices consist of “liv-
ing in the moment,” focusing on immediate
issues in the service of not worrying about the
future; “maintaining normalcy,” or carrying on
usual routines and schedules while coping with
the physical and emotional challenges of being
ill; and “seeking spiritual comfort,” which is
turning toward or finding solace within one’s
religious or spiritual belief system.
The social dignity inventory refers to the qual-
ity of interactions with others that enhance or
detract from a sense of dignity. The defining
characteristic of this inventory is that it refers to
external sources or issues that might impinge
on a patient’s sense of dignity. Five primary
inventory themes were identified:
Y Privacy boundaries: the extent to which dig-
nity can be influenced by encroachments
FIGURE 1 The Dignity Model. Reprinted from Chochinov et al,
with permission from Elsevier.
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 93
one’s personal environment during the
course of receiving care or support.
Y Social support: the presence of an available
and helpful community of friends, family, or
health care providers.
Y Care tenor: the attitude others demonstrate
when interacting with the patient.
Y Burden to others: the distress engendered by
having to rely on others for various aspects
of personal care or management.
Y Aftermath concerns: the worry or fears associ-
ated with anticipating the future burden or
challenges that dying will impose on others.
The model highlights how dying patients
may experience a waning of their dignity and,
in turn, provides direction for how to construct
dignity-enhancing interventions for patients
nearing death (Table 2).
The Dignity Model can be thought of as a
therapeutic map, guiding clinicians to find in-
terventional strategies or insights based on each
of the themes and subthemes subsumed within
the model (Table 2). Although this has been
extensively described elsewhere, a few illustra-
tive examples may highlight its clinical utili-
Within the broad theme of illness-
related concerns, medical uncertainty and
death anxiety are listed as sources of distress that
would precipitate enquiry such as “is there
anything further about your illness that you
would like to know” or “if you are getting all
the information you feel you need.” For some
patients, knowing the details of their condition
and how death will arrive is part of a dignity-
conserving strategy. Case in point: the most
frequently downloaded article at the Canadian
Virtual Hospice, a national web-based network
of information and support for dying patients,
their families, care providers, and volunteers, is
one entitled “When Death is Near.”
article describes the physical changes associated
with dying and the progression of changes as
death approaches. Clearly, for many patients
and families, being able to access such informa-
tion and knowing the contingencies invoked in
response to any crises are critical aspects of a
dignity-conserving strategy.
Under the heading “dignity-conserving rep-
ertoire,” various subthemes point to a variety
of therapeutic insights and strategies (eg, see
Dignity Therapy). For example, under the sub-
themes of “continuity of self,” “maintaining
pride,” and “role preservation,” the therapeutic
correlate is listed as “see[ing] the patient as
worthy of honor, respect, and esteem” by way
of asking them things that are personally defin-
ing. Many would see these as the “niceties” of
care, which may or may not occur depending
on the competing interests of providing pallia-
tion. Yet, acknowledging patients as whole
persons is one of the most ardent predictors of
maintaining dignity.
In other words,
finding out who the patient is as a person, what
is important to them, and what they value are
as central to dignity-conserving care as any
other aspect of quality end-of-life care.
The social dignity inventory contains various
subthemes that are externally mediated, with
dignity-related implications. The subtheme “care
tenor” refers to the tone of care that might influ-
ence perceptions of dignity, with each patient
encounter being an opportunity to support, or
undermine, their sense of dignity. At some level,
patients are looking for affirmation regarding their
sense of worth, in spite of their dyspnea, incon-
tinence, or disfigurement. The therapeutic corre-
lates of care tenor would include a range of
subtleties that would convey such affirmation. Do
you stand at the doorway of their room or do you
enter and take a seat? Do you meet their gaze or
do you avert it? Do you include them in
decision-making conversations or so you auto-
matically exclude them or defer to others? In
other words, are you able to see and acknowledge
the person beyond even the most overwhelming
of symptoms? Again, although this is often pejo-
ratively consigned to the realm of the “touchy-
feely,” evidence would suggest that it lies at the
heart of being able to truly accomplish dignity-
conserving care.
Quantitative approaches, while asking dying
patients to rate their sense of dignity, have also
examined the correlates of dignity. Within a
cohort of 213 terminally ill cancer patients,
nearly half indicated they experienced some, or
occasional, dignity-related concerns. Com-
pared with patients whose dignity was intact,
patients with significant dignity-related con-
cerns reported that they had increased pain,
decreased quality of life, difficulty with bowel
Palliative End-of-Life Care
A Cancer Journal for Clinicians
functioning, and were dependent on others
(bathing, dressing, and incontinence issues).
These patients also reported a loss of will to
live, increased desire for death, depression,
hopelessness, and anxiety.
These studies have
established the importance of self perception,
and the way in which patients experience
themselves to be seen or appreciated, as pow-
erful mediators of preservation of one’s sense of
The data suggest that listening to
patients, validating their concerns, and ascrib-
ing meaning to their experience may engender
TABLE 2 Diagnostic Questions and Examples of Therapeutic Interventions to Conserve Dignity
Diagnostic Questions Therapeutic Interventions
Illness-related concerns
Symptom distress
Physical distress “How comfortable are you? Is there anything we
can do to make you feel more comfortable?”
Vigilance to symptom management; frequent assessment,
and application of comfort care.
Psychological distress “How are you coping with what is happening to you?” Assume a supportive stance; empathic listening; referral
to counseling.
Medical uncertainty “Is there anything further about your illness that you would like
to know? Are you getting all the information you feel you
Upon request, provide accurate, understandable
information, and strategies to deal with possible future
Death anxiety “Are there things about the later stages of your illness that you
would like to discuss?”
Level of independence “Has your illness made you more dependent on others?” Have patients participate in decision-making, regarding
both medical and personal issues.
Cognitive acuity “Are you having any difficulty with your thinking?” Treat delirium; when possible, avoiding sedating
Functional capacity “How much are you able to do for yourself?” Use orthotics, physiotherapy, and occupational therapy.
Dignity-conserving repertoire
Dignity-conserving perspectives
Continuity of self “Are there any things about you that this disease does not
See the patient as worthy of honor, respect and esteem.
Soliciting stories, life review or narrative; sharing of
photographs or crafts.
Maintenance of pride “What about yourself or your life are you most proud of?”
Role preservation “What things did you do before you were sick that were most
important to you?”
Hopefulness “What is still possible?” Encouraging and enabling the patient to participate in
meaningful or purposeful activities.
Generativity/legacy “How do you want to be remembered?” Life project (eg, making audio/video, writing letters or
journal), dignity psychotherapy.
Autonomy/control “How in control do you feel?” Involve in treatment and care decisions.
Acceptance “How at peace are you with what is happening to you?” Support the patient in their outlook; encourage doing
things that enhance their sense of well being (eg,
meditation, light exercise, listening to music, prayer).
Resilience or fighting spirit “What part of you is strongest right now?”
Dignity-conserving practices
Living in the moment “Are there things that take your mind away from illness, and
offer you comfort?”
Allow the patient to participate in normal routines, or take
comfort in momentary distractions (eg, listening to
music, daily outings).
Maintaining normalcy “Are there things you still enjoy doing on a regular basis?”
Finding spiritual comfort “Is there a spiritual or religious community that you are
connected with, or would like to be connected with?”
Make referrals to chaplain or spiritual leader; enable the
patient to participate in their particular spiritual and/or
culturally based practices.
Social dignity inventory
Privacy boundaries “What about your privacy or your body is important to you?” Ask permission to examine patient; proper draping to
safeguard and respect modesty.
Social support “Who are the people that are most important to you? Who is
your closest confidante?”
Liberal policies about visitation, rooming in; enlisting
involvement of a wide support network.
Care tenor “Is there anything in the way you are treated that is
undermining your sense of dignity?”
Treat the patient as worthy of honor, esteem and respect;
adopt a stance conveying this.
Burden to others “Do you worry about being a burden to others? If so, to whom
and in what ways?”
Encourage explicit discussion about these concerns, with
those they fear they are burdening.
Aftermath concerns “What are your biggest concerns for the people you will leave
Encourage the settling of affairs, preparation of an
advanced directive, making a will, funeral planning.
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 95
hope and ultimately bolster dignity toward the
end of life. Each encounter with a patient thus
provides an opportunity to affirm their sense of
worth: “The reflection that patients see of
themselves in the eye of the provider must
ultimately affirm their sense of dignity. At least
in part, it would appear, dignity resides in the
eye of the beholder.”
Desire for Death/Loss of Will to Live
To some degree, the loss of will to live or a
mounting desire to die may be a litmus test for
quality end-of-life care. Although in some in-
stances it may represent a growing acceptance
or readiness to die, most empirical data has
connected loss of will to live and desire for
death—along with interest in euthanasia or as-
sisted suicide—with various forms of end-of-
life distress. One study of 200 terminally ill
patients in a palliative care facility reported that
44.5% acknowledged at least a fleeting desire to
In most instances, these episodes were
brief and did not reflect a sustained or commit-
ted desire to die. Seventeen patients (8.5%),
however, reported an unequivocal and consis-
tently held desire for death to come soon.
Within this group, 59% received a diagnosis of
depression, compared with 8% in patients who
did not endorse a genuine, consistent desire for
death. Patients with depression were approxi-
mately six to seven times more likely to have a
desire for hastened death than patients without
depression. Patients with a desire for death
were also significantly more likely to experi-
ence pain and less social support than those
patients without a desire for death. Logistic
modeling of the data revealed that depression
was the only significant predictor of desire for
death in this patient population. This under-
scores the importance of psychological vari-
ables in understanding the notion of desire for
death in the face of a life-limiting illness.
A more recent study of 92 terminally ill
cancer patients reported similar findings.
Within this cohort, 16 patients (17%) were
classified as having a high desire for death, with
16% meeting criteria for a major depressive
episode. Among the depressed patients, seven
(47%) were classified as having a high desire for
hastened death, whereas only 12% without a
desire for death met criteria for depression.
Patients with major depression were four times
more likely to have a high desire for hastened
death, whereas no significant association with
present pain intensity was found. Again, the
psychological influence on desire for death was
reported to be paramount.
Few studies have directly examined the con-
struct of “will to live” among patients nearing
the end of life. A study of 168 terminally ill
cancer patients—seen within a tertiary care pal-
liative care unit—found that will to live, mea-
sured twice daily using visual analog scales,
tended to fluctuate rapidly, even over very brief
time intervals.
During the transition between
community living and inpatient palliative care,
anxiety accounted for most of the fluctuation
or variance in will to live; once patients had
been hospitalized for several days, depression
accounted for most variance in will to live.
Finally, as death drew nearer, physical symp-
tom distress—particularly dyspnea—accounted
for most of the variance in will to live. Further
studies reveal that the majority of patients (ie,
58%) maintain a high will to live even as they
are approaching death. Some maintain a mod-
erate level of will to live (11%), some patients
lose their will to live as death draws nearer
(18%), whereas a minority actually gain their
will to live (10%), likely as a result of reduced
symptom distress.
Finally, a small but inter-
esting minority (3%) demonstrate a consistent,
low will to live; these patients were signifi-
cantly more likely to report anxiety, nausea,
dyspnea, and least likely to be married or living
with a partner. Again, this evidence suggests
that for many—although certainly not all—loss
of will to live is a reflection of underlying
psychological, physical, and socially mediated
A more recent study examined a broader
range of concurrent influences on the will to
live in 189 patients with end-stage cancer.
The authors reported significant correlations
between will to live and existential, psycholog-
ical, social, and (to a lesser degree) physical
sources of distress. Existential variables proved
to have the most influence, including hopeless-
ness, burden to others, and sense of dignity.
Palliative End-of-Life Care
A Cancer Journal for Clinicians
Although it may be difficult to disentangle var-
ious sources of suffering such as depression,
hopelessness, despair, pain, or even the effects
of social isolation in the context of end-of-life
care, these findings speak to the importance of
existential issues within the experiential land-
scape of patients nearing death.
Palliative care aims to improve quality of
life, enhance spiritual or existential well-being,
and reduce suffering. It embodies an approach
to the care of the dying, rather than simply a
prescribed set of treatment modalities. More-
over, this approach is holistic, in that it includes
and extends beyond the attenuation of physical
symptoms, encompassing psychosocial, exis-
tential, and spiritual aspects of each person’s
unique illness experience. Recent research has
begun to demonstrate the value of various in-
terventional approaches in addressing these fac-
ets of end-of-life care.
General Approaches to Care
Palliative care, in and of itself, has been
shown to have salutary effects that extend well
beyond the purview of physical symptom con-
trol. Cohen, et al.
studied quality of life in 88
patients admitted to palliative care units in two
distinct regions of Canada. The McGill
Quality-of-Life Questionnaire and semistruc-
tured interviews were administered to patients
when they were admitted to a palliative care
unit and again 7 to 8 days later. Significant
improvements in quality-of-life scores (includ-
ing subscore improvements on physical, psy-
chological, and existential well-being) were
demonstrated. These findings suggest that pal-
liative care is an effective, holistic intervention
that mitigates suffering across a broad spectrum
of end-of-life concerns.
A Swedish survey
of hospital chaplains
concluded that physicians and other profession-
als should be able to address many of the ques-
tions posed to chaplains. Chaplains identified
five main categories of questions they encoun-
tered from terminally ill patients: meaning,
death and dying, pain and illness, relationships,
and religious issues. Religious issues accounted
for only 8% of these questions. Grant
fied five “spiritual interventions” used by nurs-
es: holding a patient’s hand, listening, laughter,
prayer, and being present with a patient. Over
90% of 299 nurse respondents indicated that
they would offer, suggest, or provide spiritual
help in the following situations: when a patient
explicitly requests spiritual support, is about to
die, is grieving, or receives bad news.
The very act of acknowledging spiritual or
existential distress appears to be interventional.
Such acknowledgment, however, requires be-
ing able to find appropriate language that pa-
tients and physicians find comfortable and
accessible. Some authors emphasize the impor-
tance of having a framework to guide the as-
sessment of spiritual well being. Puchalski and
recommend the mnemonic device
FICA as a way of structuring spiritual inquiry.
FICA stands for: Faith or beliefs, Importance
and influence, Community, and Address.
Some of the specific questions in each category
include: What is your faith or belief? What role
do your beliefs play in regaining your health?
Are you part of a spiritual or religious commu-
nity? How should these issues be addressed by
your health care provider?
offers practical guidance for
treating spiritual or existential suffering among
dying patients. He describes a framework that
includes: controlling physical symptoms; pro-
viding a supportive presence; encouraging life
review to help the patient recognize purpose,
value, and meaning; exploring guilt, remorse,
forgiveness, and reconciliation; facilitating reli-
gious expression; and focusing on meditative
practices that promote healing rather than cure.
Whether using formatted approaches or more
open-ended questioning, the goal is to demon-
strate openness to ongoing dialogue regarding
spiritual or existential concerns, however pa-
tients happen to frame or define them.
Chochinov and colleagues
reviewed vari-
ous psychotherapeutic approaches in the con-
text of end-of-life care. The mainstay of
therapy for terminally ill patients is supportive
therapy, which aims to bolster adaptive coping
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 97
mechanisms, minimize maladaptive ones, and
when possible, attenuate anxiety and fear.
Other interventions, such as insight-oriented
therapy or interpersonal therapy, are limited in
their application with dying patients because of
a longer time frame often embedded within
these approaches.
In a review of psychotherapeutic interven-
tions for cancer patients, Breitbart concludes
that, in populations of early-stage cancer pa-
tients and in patients with advanced disease,
group psychotherapy is an effective means of
improving quality of life and reducing psycho-
logical distress, anxiety and depression, and
physical symptoms.
These group therapy ap-
proaches primarily fall within the categories of
patient education, supportive-expressive inter-
ventions that encourage the expression of
feelings toward illness and changing life cir-
cumstances, and cognitive-behavioral inter-
ventions. As Breitbart notes, however, few
cancer group psychotherapy intervention trials
have focused specifically on existential or spir-
itual themes.
Kearney and Mount
describe “surface-
work” and “depth-work” as psychotherapeutic
responses to spiritual or existential pain.
Surface-work refers to interventions aimed at
alleviating distress at the conscious or concrete
level of the individual’s experience. Depth-
work is an approach that moves a person to-
ward deeper levels of the psyche, helping the
individual reconnect with simple and ordinary
aspects of life that they once found significant.
Examples of depth-work interventions include
art and music therapy, image work, dream
work, and certain types of meditation.
Clark and Kissane
advocate the adoption
of demoralization syndrome as a relevant pal-
liative care diagnosis, defined as “a psychiatric
state in which hopelessness, helplessness, mean-
inglessness, and existential distress are the core
Treatment consists of the fol-
lowing elements: providing continuity of care
and active symptom management; exploring
attitudes toward hope and meaning in life; bal-
ancing support for grief with promotion of
hope; fostering the search for renewed purpose
and role in life; using cognitive therapy to
reframe negative beliefs; involving pastoral
counseling for spiritual support; promoting
supportive relationships and use of volunteers;
conducting family meetings to enhance family
functioning; and reviewing goals of care in
multidisciplinary team meetings. Future studies
of this interventional approach will determine
its feasibility and efficacy in this patient popu-
Specific Approaches to Care
Thus far, we have described therapeutic ap-
proaches that are general in nature. Few spe-
cific interventions addressing spiritual or
existential suffering at the end of life have been
developed and tested. Some, at various stages
within the process of being tested, are de-
scribed briefly below.
One pilot psychotherapy program integrates
spiritual issues and resources for people diag-
nosed with cancer.
It aims to address four
concerns: control, identity, relationships, and
meaning. In psychotherapeutic groups, partic-
ipants are asked to reflect on the four thematic
spiritual issues and draw on internal spiritual
resources that support adaptive coping. The
language used in the therapy sessions is overtly
religious. For example, therapists encourage
participants to visualize God’s presence and to
view God as a partner in their group therapy
work. A study is currently underway to assess
the efficacy of this program. An important lim-
itation of this approach may be its inaccessibil-
ity to patients who do not believe in God, or
whose religion is not of the Judeo-Christian
tradition. It is also not clear whether the ther-
apy would be appropriate for people in the late
stages of their illness.
Miller and colleagues
describe a supportive-
affective program focusing on spirit, emotions,
and relationships. The program targets adults ex-
periencing heart or lung disorders, HIV/AIDS,
cancer, or geriatric frailty, with a life expectancy
of at least 6 months but likely not more than 24
months. Special attention is devoted to the needs
of African American patients and their caregivers.
Participants meet for monthly group discussions
and are encouraged to raise issues related to spir-
ituality, emotions, and relationships. The pro-
gram is designed to accommodate participants
Palliative End-of-Life Care
A Cancer Journal for Clinicians
from diverse religious backgrounds and also pa-
tients who do not participate in organized reli-
gion. A randomized controlled trial demonstrated
significant improvement on depression and mea-
sures of religious well-being, but not existential
well-being. Patients in the intervention groups
were more likely to raise spiritual issues with their
primary physician. Depression symptoms were
reduced in the intervention group compared
with controls, but this did not reach statistical
significance. State anxiety remained unchanged.
Positive changes in religious and existential spir-
itual well-being also did not reach statistical sig-
nificance. Death meaninglessness, however, was
significantly lower at posttest in the intervention
group. When noncompliant patients were with-
drawn from the analysis, the effects for depression
and spiritual well-being were statistically signifi-
cant and the effect for death meaninglessness re-
mained positive. Despite several limitations
associated with this study, the authors believe it
offers qualified support for the intervention’s
ability to reduce depressive symptoms and death-
related feelings of meaninglessness while increas-
ing spiritual well-being.
Spira and Breitbart
address spiritual suf-
fering in ambulatory advanced cancer patients
with meaning-centered group psychotherapy.
This therapeutic approach is based on the work of
existential psychotherapist Viktor Frankl.
cording to Frankl, meaning (or sensing that life
has meaning) requires the conviction that one is
fulfilling a unique role and purpose. With this
comes the responsibility to live to one’s full po-
tential as a human being, thus achieving a sense of
peace, contentment, or even transcendence
through connectedness with something greater
than oneself. The primary tenet of Frankl’s logo-
therapy is that people always have control over
their attitude or outlook, no matter how enor-
mous the adversity. Logotherapy aims to decrease
patients’ suffering and have them live life to its
fullest, by engaging in activities that engender the
greatest amount of meaning and purpose.
Meaning-centered group psychotherapy
aims to help participants sustain or enhance a
sense of meaning, peace, and purpose in their
lives, and to make the most of each group
member’s remaining time.
A combination
of instruction, discussion, and experiential ex-
ercises are used in eight group sessions. Each
session is organized around a specific meaning-
centered theme. Because the therapists view
the search for meaning as a creative, individual,
and active process, patients are encouraged to
be active participants in the group process.
Preliminary evaluation points to favorable re-
sults. Before the intervention, approximately
40% of study participants did not report a sense
of meaning or purpose in their lives. Postint-
ervention, none of the participants perceived
life as meaningless; at 2-month follow up, ben-
eficial treatment effects continued to mount. A
version of this intervention for individual use is
currently being developed.
Based on the previously described Dignity
Model, Chochinov and colleagues
oped a therapeutic intervention called “Dig-
nity Therapy,” targeting depression and
suffering in palliative care patients. Briefly,
Dignity Therapy poses questions that offer an
opportunity for patients to address aspects of
life that they feel were most important or
were most meaningful; the personal history
they most want remembered; or things that
need to be said (Table 3). Within a Phase I
trial of Dignity Therapy, this intervention
was carried out by psychiatrists, psycholo-
gists, and experienced palliative care nurses.
Dignity therapy allows the patient to address
grief-related issues, offer comfort to the
soon-to-be bereft loved ones, or provide in-
structions to friends and family. The sessions
(usually not more than two, each less than
1-hour duration) are tape recorded, tran-
scribed and edited, and then returned to the
patient. This creates a tangible product—a
legacy or generativity document—that, in
effect, allows the patient to leave behind
something that is permanent or lasting; in
most instances this is bequeathed to a family
member. In contrast to other psychothera-
pies, Dignity Therapy is brief, can be done at
the bedside, and aims to affect both patients
and their loved ones.
Chochinov and colleagues
found that of 100
terminally ill patients who took part in Dignity
Therapy, 91% reported being satisfied. Addition-
ally, a heightened sense of dignity was found in
76% of patients, an increased sense of purpose in
CA Cancer J Clin 2006;56:84–103
Volume 56 Y Number 2 Y March/April 2006 99
68%, a heightened sense of meaning in 67%, an
increased will to live in 47%, and 81% reported
that it had been (or would be) of help to their
family. Postintervention measures of suffering
showed significant improvement (P 0.023) and
reduced depressive symptoms (P 0.05). Patients
who felt Dignity Therapy helped their family
reported feeling life was more meaningful (r
0.480; P 0.0001), accompanied by a height-
ened sense of purpose (r 0.562; P 0.0001),
will to live (r 0.387; P 0.0001), and a
lessened sense of suffering (r 0.327; P 0.001).
The salutary effects of enabling dying patients to
attend to the well-being of loved ones may help
explain the ability of Dignity Therapy to reduce
suffering and distress at the end of life.
Dignity Therapy and meaning-centered
group psychotherapy have shown initial
promise, and are currently undergoing more
rigorous testing using a randomized con-
trolled trial design. Although these interven-
tions aim to bolster dignity, hope, and
meaning, their ability to reduce existential or
spiritual distress is independent of any ex-
plicit religious or faith-based focus. Whether
religious or secular in nature, approaches that
guide or shape spiritual or existential care
need to be evaluated to answer the question
of their feasibility and efficacy. How we
broach these aspects of care—including the
language we use to frame these issues—also
needs to be evaluated, to assure that patients
are approached in a way that is comfortable
and accessible, regardless of individual reli-
gious or secular orientation. Ultimately,
however, as Marrone notes, “in the midst of
dealing with profound loss in our lives, the
ability to reascribe meaning to a changed
world through spiritual transformation, reli-
gious conversion, or existential change may
be more significant than the specific content
by which that need is filled.”
In his extensive writings on despair at the
end of life, Eric Cassel
suggests that suffer-
ing is proportionate to the extent that an
individual’s sense of self or personhood un-
dergoes, or is threatened by, disintegration.
Yet, for patients approaching death, these
assaults on personhood are often unavoid-
able. The process of dying sees mounting
vulnerability punctuated by increasingly dif-
ficult physical, psychosocial, and spiritual/
existential challenges. Patients may struggle
to locate a sense of self that is unencumbered
by illness. In many instances, they will un-
dergo a gradual redefining of self and per-
sonal expectations shaped by the daily
realities of accommodating to deteriorating
health. In turn, health care providers com-
mitted to dignity-conserving care must find
ways of responding to patients— or rather to
whole persons—that are not solely defined
by the exigencies of the underlying illness.
Within the field of palliative care, developing
compassionate and effective responses, which
are individually tailored and sensitive to a
patient’s fluctuating deteriorating health sta-
tus, is a critical challenge.
Significant advances have been made in the
area of palliative symptom management. Yet, a
mechanistic or technological paradigm is too nar-
row to encompass the full potential of palliative
TABLE 3 Dignity Psychotherapy Question Protocol
Tell me a little about your life history, particularly the parts that you either remember most or think are the most important? When did you feel most alive?
Are their specific things that you would want your family to know about you, and are their particular things you would want them to remember?
What are the most important roles you have played in life (family roles, vocational roles, community service roles, etc.)? Why were they so important to you and what do
you think you accomplished in those roles?
What are your most important accomplishments, and what do you feel most proud of?
Are there particular things that you feel still need to be said to your loved ones, or things that you would want to take the time to say once again?
What are your hopes and dreams for your loved ones?
What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your [son, daughter,
husband, wife, parents, other(s)]?
Are their words or perhaps even instructions you would like to offer your family, to help prepare them for the future?
In creating this permanent record, are their other things that you would like included?
Palliative End-of-Life Care
A Cancer Journal for Clinicians
care, which aims to deliver holistic, compassion-
ate, and medically savvy end-of-life care. These
attributes are by no means mutually exclusive
and, in fact, are highly interdependent within a
dignity-conserving model of care. Nowhere is
the adage “to cure sometimes, to heal often, to
comfort always” more salient than in end-of-life
care. Yet, knowing how to provide comfort re-
quires insight into the complete landscape of a
dying patient’s experience. Within the new ho-
rizons of palliative care, these insights will provide
the foundation for novel and compassionate ap-
proaches, intended to bolster hope, enhance
meaning, and lessen suffering for patients nearing
death. In this way, and in accordance with the
vision of the late Dame Cicely Saunders, pallia-
tive care “will do all [it] can, not only to help you
die peacefully, but also to live until you die.”
The author gratefully acknowledges the
assistance of his research nurse, Beverley J.
Cann, RN, MN, in helping to prepare this
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Volume 56 Y Number 2 Y March/April 2006 103
    • "The effects of psychooncologic interventions on emotional distress and quality of life in adult patients with cancer have been well studied (Faller et al., 2013). Specifically for our study, palliative care units are made to provide comfort to the patient and family in a medical, psychosocial, existential and spiritual context (Chochinov, 2006). The importance of palliative care needs to be highlighted because patients, especially those under psychosocial distress, may refuse to be referred (Gerhart et al., 2015). "
    [Show abstract] [Hide abstract] ABSTRACT: This work aims to investigate the factors associated with psychological distress in advanced cancer patients under palliative treatment. We comprehensively assessed the demographic, psychosocial and health factors of 158 advanced cancer patients. Patients with high and low distress, according to the Hospital Anxiety and Depression Scale, were compared. A regression analysis was built to identify the best predictors of distress. Patients with high psychological distress (81%) were more likely to have lung cancer, suicidal ideation, hopelessness, low quality of life and poor body image than those without. In the multivariate model, only poor emotional functioning (OR = .89; 95% CI = .83-.95; p ≤ .001), hopelessness (OR = .86; 95% CI = .78-.94; p ≤ .001) and body image distortions (OR = .77; 95% CI = .68-.85; p = .005) were retained. High levels of hopelessness, impaired emotional functioning and body image distortions are the main factors associated with psychological distress in patients with advanced cancer. Potential interventions to modify these factors in palliative units are discussed.
    Article · Jun 2016
    • "Si bien no todas las dimensiones contribuyeron de forma equitativa al sufrimiento, sí hubo una estrecha correlación de las dimensiones entre sí. Este hallazgo corrobora la concepción teórica de que la disrupción en una de las dimensiones genera alteraciones simultáneas en las demás, pues afecta a la persona como un todo (Chochinov, 2006; Woodruff, 2004), y aporta evidencia adicional acerca de la multidimensionalidad de la experiencia de sufrimiento (Krikorian, Limonero & Maté, 2011). El hecho de que no se haya encontrado una fuerte relación entre la dimensión social y el grado de sufrimiento no es de extrañar, si se tiene en cuenta que los enfermos contaban con una adecuada disponibilidad de apoyo sociofamiliar, lo que manifiesta la tendencia cultural existente en Colombia a proteger y acompañar activamente a las personas "
    [Show abstract] [Hide abstract] ABSTRACT: Objective: To examine the experience of suffering and its relation with physical, psychological, social and spiritual problems in advanced cancer patients. Methods: Ninety-eight patients attending the palliative care unit of an oncologic institution participated in the study. The level of suffering and the intensity and threat perceived from symptoms and a series of physical, psychological, social and spiritual problems were examined, as well as adjustment levels, illness awareness and coping strategies. Descriptive and comparative statistics were obtained. Results: Nearly 50% of participants manifested moderate suffering. The most frequent problems encountered were: general distress, asthenia, emotional distress, loss of autonomy, sadness, concern for the family´s future and suffering. Severe suffering was associated to adjustment problems and use of wishful thinking. Lower levels of suffering were associated with cognitive restructuring and avoidance strategies. Conclusions: Results indicate the importance of focusing on the subjective aspects of the illness experience. Any symptom or problem has the potential to become a source of suffering when perceived as threatening and when the person´s regulatory processes are insufficient for adaptation.
    Full-text · Article · Sep 2015
    • "Si bien no todas las dimensiones contribuyeron de forma equitativa al sufrimiento, sí hubo una estrecha correlación de las dimensiones entre sí. Este hallazgo corrobora la concepción teórica de que la disrupción en una de las dimensiones genera alteraciones simultáneas en las demás, pues afecta a la persona como un todo (Chochinov, 2006; Woodruff, 2004), y aporta evidencia adicional acerca de la multidimensionalidad de la experiencia de sufrimiento (Krikorian, Limonero & Maté, 2011). El hecho de que no se haya encontrado una fuerte relación entre la dimensión social y el grado de sufrimiento no es de extrañar, si se tiene en cuenta que los enfermos contaban con una adecuada disponibilidad de apoyo sociofamiliar, lo que manifiesta la tendencia cultural existente en Colombia a proteger y acompañar activamente a las personas "
    [Show abstract] [Hide abstract] ABSTRACT: Objetivo: Examinar la experiencia de sufrimiento y su relación con problemas físicos, psicológicos, sociales y espirituales en pacientes oncológicos. Método: 98 enfermos de una institución oncológica en cuidados paliativos participaron en el estudio. Se examinó el grado de sufrimiento, la intensidad y amenaza de síntomas y problemas físicos, psicológicos, sociales y espirituales, el grado de ajuste y de conciencia de enfermedad y las estrategias de afrontamiento. Se realizaron análisis estadísticos descriptivos y comparativos. Resultados:Aproximadamente el 50% de los participantes manifestaron un sufrimiento moderado. Los problemas más frecuentes fueron malestar general, astenia, alteración del estado de ánimo, pérdida de la autonomía, tristeza, preocupación por el futuro de la familia y sufrimiento. Un sufrimiento moderado a severo se asoció con mayor dificultad en el ajuste general y uso de la estrategia de afrontamiento de pensamiento desiderativo. Un menor sufrimiento se asoció con estrategias de reestructuración cognitiva y evitación de problemas. Conclusiones: Se resalta la importancia de atender los aspectos subjetivos de la experiencia. Cualquier síntoma o problema tiene el potencial de generar sufrimiento, en la medida en que sea percibido como amenazante, y los procesos regulatorios con los que cuente la persona impidan la adaptación. Palabras clave: sufrimiento; cáncer; final de vida; malestar emocional; factores asociados; psicológico; social; físico; espiritual Objective: To examine the experience of suffering and its relation with physical, psychological, social and spiritual problems in advanced cancer patients. Methods: Ninety-eight patients attending the palliative care unit of an oncologic institution participated in the study. The level of suffering and the intensity and threat perceived from symptoms and a series of physical, psychological, social and spiritual problems were examined, as well as adjustment levels, illness awareness and coping strategies. Descriptive and comparative statistics were obtained. Results: Nearly 50% of participants manifested moderate suffering. The most frequent problems encountered were: general distress, asthenia, emotional distress, loss of autonomy, sadness, concern for the family´s future and suffering. Severe suffering was associated to adjustment problems and use of wishful thinking. Lower levels of suffering were associated with cognitive restructuring and avoidance strategies. Conclusions: Results indicate the importance of focusing on the subjective aspects of the illness experience. Any symptom or problem has the potential to become a source of suffering when perceived as threatening and when the person´s regulatory processes are insufficient for adaptation. Keywords: suffering; cancer; end-of-life; distress; associated factors; psychological; social; physical; spiritual.
    Full-text · Article · Aug 2015
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