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Dying, Dignity, and New Horizons in Palliative End of Life Care

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Dying, Dignity, and New Horizons in Palliative End of Life Care

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Palliative End-of-Life Care

Dying, Dignity, and New Horizons in

Palliative End-of-Life Care1
Harvey Max Chochinov, OM, MD, PhD, FRCPC

Dr. Chochinov is Canada Research

Chair in Palliative Care, Professor, ABSTRACT Palliative care practitioners are now better able than ever before to ameliorate end-
Department of Psychiatry, University of-life symptom distress. What remains less developed, however, is the knowledgebase and skill set
of Manitoba, Winnipeg, Manitoba,
Canada; and Director, Manitoba Pal- necessary to recognize, assess, and compassionately address the psychosocial, existential, and
liative Care Research Unit, Cancer spiritual aspects of the patient’s dying experience. This review provides an overview of these areas,
Care Manitoba, Winnipeg, Mani-
toba, Canada. focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric
This article is available online at challenges in end-of-life care is complemented with a list of resources for readers wishing to explore
http://CAonline.AmCancerSoc.org 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

INTRODUCTION

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.1
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.2 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

1
This work was supported by the National Cancer Institute of Canada, the Canadian Cancer Society, and the Canadian Institutes for Health Research.

84 CA A Cancer Journal for Clinicians

15424863, 2006, 2, Downloaded from https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/canjclin.56.2.84 by CochraneArgentina, Wiley Online Library on [18/06/2024]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
CA Cancer J Clin 2006;56:84–103

achieve dignity-conserving end-of-life care.3 should intensify once cure is no longer deemed
This review article invites readers to explore these possible.
particular horizons of palliative care, to help them
fulfill their role as competent and compassionate
DEFINING A “GOOD DEATH”
providers of care for patients with life-threatening
illness.
Although dying is part of the human con-
dition, dying poorly ought not to be. Inves-
DEFINING PALLIATIVE CARE tigators have begun to look at various
domains of what constitutes a “good death.”
The modern hospice movement began with A meaningful dying process is one during
Dame Cicely Saunders, whose philosophy of which the patient is physically, psychologi-
palliation included holistic care, along with a cally, spiritually, and emotionally supported
progressive and modern approach to the med- by his or her family, friends, and caregivers.
ical management of end-of-life symptoms. According to the Institute of Medicine, a
Dame Saunders opened St. Christopher’s Hos- good death is one that is “free from avoidable
pice, the first residential hospice, in 1967.4 As distress and suffering for patient, family and
fate would have it, she died in St. Christopher’s caregivers, in general accord with patient’s
Hospice at age 87 years, on July 14, 2005. and family’s wishes, and reasonably consis-
Palliative care offers specialized treatment to tent with clinical, cultural, and ethical stan-
people whose illness is no longer considered cur- dards.”7 Weisman described four criteria for
able. Its primary goals are to provide comfort and what he referred to as “an appropriate
death”: internal conflicts, such as fears about
care for those with life-limiting illnesses and their
loss of control, should be reduced as much as
families, so that patients are able to die peacefully
possible; the individual’s personal sense of
in the setting of their choice— often their own
identity should be sustained; critical relation-
home—while receiving all necessary nursing,
ships should be enhanced or at least main-
medical, psychosocial, and spiritual care.5 The
tained, and if possible, conflicts resolved; and
World Health Organization (WHO) defines pal-
the person should be encouraged to set and
liative care as “an approach that improves the
attempt to reach meaningful, albeit limi-
quality of life of individuals and their families
ted, goals such as attending a graduation, a
facing the problems associated with life- wedding, or the birth of a child, as a way
threatening illness, through the prevention and to provide a sense of continuity into the
relief of suffering by means of early identification future.8
and impeccable assessment and treatment of pain On the basis of qualitative studies, Singer, et
and other problems, physical, psychosocial and al. determined the primary concerns of patients
spiritual.”6 Embedded within the WHO defini- regarding their impending deaths.9 These in-
tion is a commitment to relieving pain and other cluded receiving adequate pain and symptom
distressing symptoms, the affirmation of life while management, avoiding inappropriate prolonga-
regarding dying as a normal process, an intent to tion of dying, achieving a sense of control,
neither hasten nor postpone death, an integration relieving burden, and strengthening relation-
of psychological and spiritual aspects of patient ships with loved ones. Creating every oppor-
care, the provision of support to help patients live tunity to bolster or enhance these relationships
as actively as possible until their death, with sup- is in keeping both with patient wishes and
port being provided to help families cope during fundamental principles of palliative care. In a
their loved ones’ illnesses and into their own recent Institute of Medicine report entitled
bereavement. Whenever possible, palliative care “Approaching Death: Improving Care at the
endeavors to enhance the quality of life of patients End of Life,” several domains of quality end-
as they move toward death. Palliative care can be of-life care were identified: overall quality of
applied at all stages of life-threatening disease and life, physical well-being and functioning,

Volume 56 Y Number 2 Y March/April 2006 85

achieving a sense of spiritual peace and well- der.12,15,16 Adjustment disorder with anxiety
being, patient perception of care, and family is often related to the existential crisis sur-
well-being and functioning.7 rounding the uncertainties that accompany a
life-limiting prognosis.17 Patients confront-
ing a terminal illness who have pre-existing
PSYCHIATRIC CHALLENGES anxiety disorders are at risk for reactivation
of their symptoms. Symptoms such as pain or
These definitions of palliative care and descrip- dyspnea may reactivate a generalized anxi-
tions of a good death would suggest great sensi- ety or panic disorder, whereas patients with
tivity to the psychosocial, existential, and spiritual a history of phobias— especially fear of
aspects of patient well-being. Yet, in spite of this, death—may manifest anxiety symptoms re-
there are aspects of end-of-life distress that are not quiring both medication and emotional sup-
routinely assessed, let alone effectively treated or port. Posttraumatic stress disorder may be
managed. Recent evidence suggests that as pa- reactivated in dying patients if their illness
tients with cancer or acquired immunodeficiency experience resonates with prior near-death
syndrome (AIDS) enter the advanced stages of encounters or other significant trauma.18
illness, the burden of both physical and psycho- All dying patients will experience times of
logical symptoms becomes staggering. Physical sadness as a normal part of coming to terms with
concerns such as pain, dyspnea, and constipation life drawing to a close. Approximately 25% of all
have been reported to be less prevalent in patients cancer patients, however, will experience severe
with advanced cancer or AIDS than symptoms depressive symptoms, with the prevalence in-
such as worrying, nervousness, lack of energy, creasing with higher levels of disability, advanced
insomnia, and sadness.10 illness, and pain.19 –22 Although concern is often
Over the last decade, much work has been raised about the nonspecificity of somatic symp-
done to establish the incidence and prevalence of toms in reaching a diagnosis of depression, clinical
psychiatric issues among patients nearing death.11 wisdom and experience suggest that greater diag-
For example, anxiety disorders in terminally ill nostic emphasis should be placed on psychologi-
cancer and AIDS patients ranges from 15% to cal symptoms, such as depressed mood, loss of
28%,12 with some studies indicating a higher interest, helplessness, hopelessness, excessive guilt,
prevalence of mixed anxiety and depressive feelings of worthlessness, and desire for death, as
symptoms in cancer patients rather than anxiety opposed to physical criteria.21,22 Although
alone.13 The prevalence of anxiety appears to screening strategies as simple as asking the patient
increase with advancing disease and mounting if they are depressed “most of the time” have
deterioration in the patient’s physical status.14 As shown good diagnostic sensitively and specificity,
patients become sicker, their anxiety may include depression continues to be overlooked among
fears about the disease process, the clinical course, patients who are terminally ill. This further adds
possible treatment outcomes, and death. In addi- to their burden of suffering and undermines their
tion, particularly in patients with AIDS, anxiety quality of life.23
may result from fear of increasing social stigma as Although a complete overview of psychi-
their medical illness deteriorates and becomes atric disorders in end-of-life care is beyond
more evident.12 the scope of this review, several monographs
Among patients who are terminally ill, and key references are readily available (Ta-
anxiety can occur within the context of an ble 1). Psychiatric diagnoses, however, pro-
adjustment disorder (characterized by a re- vide too narrow a framework to contain the
sponse that is considered excessive and im- broad spectrum of end-of-life distress.24
pairs social or occupational functioning), More ubiquitous aspects of suffering—in-
with anxious mood alone or in combination cluding psychological, existential, or spiritual
with depressed mood; it can be a disease- distress—are not necessarily well understood
related or treatment-related condition or an or researched, nor do they necessarily engen-
exacerbation of a pre-existing anxiety disorder a well-considered response. Distress of

86 CA A Cancer Journal for Clinicians

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
1995;10:131–141.
Breitbart W, Gibson C, Chochinov HM. Palliative Care, in Levenson JL, ed. Textbook of Psychosomatic Medicine. Washington DC: American Psychiatric Publishing;
2005.
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
2000;284:2460–2468.
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.

this kind may express itself as an overwhelm- patient’s illness experience and resonates with a
ing sense of hopelessness, existential or spir- sense of our common humanity.
itual angst; loss of sense of dignity; sensing Holistic care acknowledges that each individ-
oneself a burden to others; or a waning of ual is an integrated whole, more than the simple
one’s will to live and a growing desire for sum of physical and psychological “parts,” a unity
death or wish to no longer carry on living. or total person who is situated in a social world
What follows is an overview of the empirical that includes the ill person and caregivers.25 The
work that has explored these facets of the ineffable in our relationships with patients and
dying experience. their families derives from our personal and pro-
fessional response to the confluence of existential,
spiritual, physical, and psychosocial concerns that
THE EXPERIENTIAL LANDSCAPE OF arise toward the time of death. To be sure, these
APPROACHING DEATH sources of distress are intricately interconnected,
although the independent effect of spiritual con-
Good palliative care practice obliges us to ac- cerns on quality of life has been empirically dem-
knowledge the innate existential nature of distress onstrated. Using the spirituality subscale of the
that accompanies the experience of dying people. Functional Assessment of Chronic Illness Ther-
Rooted as we are in a contemporary biomedical apy (FACIT-Sp) Scale, Brady and colleagues
model of disease, it is tempting to direct most, found a unique positive association between spir-
perhaps all, of our attention to the diagnosis and ituality and quality of life that equaled the associ-
alleviation of physical symptom distress. Yet ation between physical well-being and quality of
within one-to-one interactions with dying pa- life in an ethnically-diverse sample of 1,610
tients, few care providers remain unaware that cancer patients.26 Despite the artificiality of pars-
there are aspects of distress that defy even the ing spiritual or existential distress from physical
most sophisticated of medicinal or technological and psychosocial concerns, doing so provides an
modalities. Something else is at play and we opportunity to more fully explore the meaning of
know it, because it evokes empathy toward our spiritual or existential “suffering.”

Volume 56 Y Number 2 Y March/April 2006 87

Spirituality and Existentialism itual dimensions of end-of-life experience. Be-

tween 1994 and 1998, 6.3% of empirical
Spirituality is variably understood, with one studies in palliative care journals included spir-
comprehensive review of the health literature itual and religious variables, versus 1% of em-
counting 92 separate definitions.27 These defi- pirical studies published in leading medical
nitions were divided between seven major the- journals. Of 1,117 empirical studies published
matic categories, including: a relationship to in five palliative medicine/hospice journals, re-
God, a spiritual being, a higher power, or a searchers measured spirituality using variables
reality greater than the self; not of the self; such as spiritual well-being, meaning, or tran-
transcendence or connectedness unrelated to a scendence (32%), followed by religious affilia-
belief in a higher being; existential, not of the tion (29%) and spiritual/religious services
material world; meaning and purpose in life; provided (19%).34
life force of the person, integrating aspect of the In our secular society, explicit or implicit reli-
person; and summative definitions that com- gious connotations associated with the term spir-
bined multiple themes. Spirituality embodies a ituality have been moderated such that many
sense of connectedness to a personal god or definitions make no mention of God or a higher
higher force or power, and is considered a power. Instead, the term evokes a sense of search-
broader construct than religion.28,29 ing or yearning for significance or meaning in
Some initial contemporary efforts have been life. Existentialism is a body of thought originally
made to define spirituality from the perspective enunciated by philosophers such as Arthur
of dying patients. Chao and colleagues asked Schopenhauer, Soren Kierkegaard, Friedrich Ni-
six Buddhist and Christian terminally ill cancer etzsche, and Martin Heidegger. Existentialists ap-
patients in Taiwan what the essence of spiritu- preciate the individual’s experience of living and
ality was to them. Ten themes in four broad acknowledge meaning, purpose, and value in ev-
categories emerged: communion with self (self- eryday life. A psychotherapeutic orientation has
identity, wholeness, inner peace); communion grown out of existential philosophy. It views
with others (love, reconciliation); communion serious illness— especially life-threatening ill-
with nature (inspiration, creativity); and com- ness—as an opportunity for growth. Confronted
munion with a higher being (faithfulness, hope, with the prospect of annihilation, patients’ life-
gratitude).30 Hermann noted that as in-depth time assumptions about meaning and value may
interviews with 19 hospice patients progressed, be shattered by their daily illness experience. This
many whose initial definitions of spirituality affords an opportunity, a moment of insight, to
related to God or other religious terms later re-evaluate life activities and to choose those that
identified terms associated with meaning and add greatest meaning, purpose, and value in the
purpose or nature and acknowledged that spir- time left.35 Distinguishing between the terms spir-
ituality was part of their total existence.31 ituality and existentialism—particularly in the con-
McGrath interviewed 14 people living at text of palliative care—is perhaps less important
home in Australia with a prognosis of less than 6 than recognizing the common ground between
months. She found that most did not seek explic- the two terms: the human urge to imbue life with
itly religious comfort in response to their illness purpose, meaning, and hope.
and that there was a degree of eclecticism in the
religiospiritual concepts expressed by partici- Spiritual and Existential Suffering
pants.32 In a comparative study of cancer survi-
vors and hospice patients, McGrath concluded Spiritual suffering or pain may manifest itself
that maintaining an intimate connection with life within various domains of the patient’s experi-
through family, friends, leisure, home, and work ence, be it physical (eg, intractable pain), psycho-
was just as important to individuals as transcen- logical (eg, anxiety, depression, hopelessness),
dent meaning-making, religious or otherwise.33 religious (eg, crisis of faith), or social (eg, disinte-
Palliative care researchers have increasingly gration of human relationships). However, it is
recognized the importance of examining spir- not possible to recognize spiritual pain on the

88 CA A Cancer Journal for Clinicians

basis of symptoms alone. Rather, spiritual pain is scores (␤ ⫽ – 0.30, P ⬍ 0.001), indicating that
the combination of these aforementioned symp- individuals scoring higher on the spiritual mea-
toms and characteristic behaviors, including: pa- sure were less depressed. In a sample of 160
tients who are desperate to escape their situation; hospitalized cancer patients admitted for termi-
patients with expectations of caregivers that are nal care, McClain, et al.38 assessed the relation-
impossible to meet; patients who continue to try ship between spiritual well-being, depression,
new therapies in the absence of any benefit; and and end-of-life despair. The study demon-
patients who require escalating doses of analgesics strated significant negative correlations be-
and sedatives despite no apparent benefit, or even tween spiritual well-being and desire for
when these measures are clearly counterproduc- hastened death (r ⫽ – 0.51, P ⬍ 0.001), hope-
tive. These behaviors often evoke descriptions lessness (r ⫽ – 0.68, P ⬍ 0.001), and suicidal
such as “suffering” or “anguish,” which can help ideation (r ⫽ – 0.41, P ⬍ 0.001). They con-
identify this form of pain.29 cluded that spiritual well-being offered some
In a study of caregivers, hospital chaplains, protection against end-of-life despair, based on
palliative care physicians, and pain specialists, the additional findings that depression was sig-
definitions of existential pain ranged from those nificantly correlated with desire for hastened
that stressed issues of guilt and religion (chap- death in patients low in spiritual well-being
lains) to those that related to annihilation and (r ⫽ 0.40, P ⬍ 0.001), but not in those high in
impending separation (palliative care physi- spiritual well-being.
cians). Although some pain specialists empha- Similarly, McClain-Jacobson, et al.39 studied
sized that living is painful, they concluded that the effect of afterlife beliefs on psychological
existential pain is most often used as a metaphor
distress and end-of-life despair in 276 palliative
for suffering.36
care cancer inpatients. Belief in an afterlife was
According to McGrath,29 who developed a
associated with lower levels of hopelessness (4.6
paradigm of spiritual pain from a qualitative
versus 7.9, P ⫽ 0.001), desire for death (3.5
study of 12 survivors of hematological malig-
versus 5.4, P ⫽ 0.027), and suicidal ideation
nancies, the notion of spiritual pain or suffering
(12.0% versus 27.7%, P ⫽ 0.029), which are
includes: “. . .a sense of diffuse emotional/ex-
factors considered important in end-of-life de-
istential/intellectual pain directly related to the
meaninglessness created as a result of a break spair. Belief in an afterlife was not significantly
with the expected/normal network of relation- associated with depression or anxiety. When
ships that function to connect one to life. A key spirituality levels were controlled for, the effect
ingredient in that pain is the sense that the- of afterlife beliefs disappeared, suggesting that
. . .experience with life is failing to meet the spirituality has a more powerful effect on psy-
individual’s needs, and thus the expected satis- chological functioning than beliefs regarding an
faction and meaning-making from life are not afterlife.
forth-coming.” If spiritual or existential well-being imbues
Few researchers have studied the effect of life with a sense of purpose or meaning, then it
spiritual or existential well-being on dying pa- follows that a lack of purpose or meaning may
tients’ senses of suffering, but those who have lead to a disinvestment in life itself. Over the
report a protective effect against end-of-life last decade, researchers—recognizing the im-
despair. Nelson, et al. studied the impact of portance of existential or spiritual issues for
spirituality and religiosity on depressive symp- dying patients— have begun to conceptually
toms in 162 patients dying of cancer or parse out and examine the effect of hopeless-
AIDS.37 Using the Functional Assessment of ness, burden to others, loss of sense of dignity,
Chronic Illness Therapy Spiritual Well-Being and loss of will to live on patients approaching
(FACIT-Sp) Scale and the Hamilton Depres- death. Greater understanding of the influence
sion Rating Scale (HDRS), they demonstrated of these issues on distress and despair will afford
a statistically significant negative association be- opportunities to improved comfort and care
tween HDRS scores and FACIT-Sp total toward the end of life.

Volume 56 Y Number 2 Y March/April 2006 89

Hopelessness able, were more likely than other participants

to express hopelessness, a loss of interest or
Intuitively, one might suspect that patients pleasure in activities, and a desire to die; they
whose medical prognosis is “hopeless” would were also more likely to have depressive disor-
uniformly endorse a sense of hopelessness. Yet, ders. Similarly, Virik and Glare45 reported that
this is not supported by the empirical data. For among terminally ill patients requesting eutha-
instance, in reporting existential distress among nasia, half endorsed a sense of hopelessness.
162 terminally-ill Japanese hospice inpatients, In one study seeking to gain conceptual
Morita, et al.40 found that only 37% expressed clarity of the notion of hopelessness from dying
a sense of hopelessness. Other sources of dis- patients, Chochinov, et al.46 reported that
tress included feeling a sense of dependency within this patient population, hope was re-
(39%), meaninglessness in present life (37%), lated to concepts of meaning and purpose. For
feeling a burden to others (34%), loss of social patients nearing death, maintaining hope was
role functioning (29%), and feeling emotionally intimately connected with a sense that life con-
irrelevant (28%).40 Given that this was a group tinued to serve some purpose or held meaning
of dying patients, it is clear that hope is based enough to sustain their continued existence.
on something other than prognosis, or, as stated Similarly, Duggleby47 reported that maintain-
by Hockley,41 it is a “concept that suggests a ing hope was a way for terminally ill patients to
greater emotional component than mere ex- endure and cope with their suffering. For these
pectation, and is seen as an active process of patients, hope was defined in terms of hope for
conscious and unconscious meaning.” no more suffering, living each day, a peaceful
Several studies have shown that, among pa- death, and hope for their families.48 To “live
tients with advanced disease, severe or perva- with hope,” palliative care patients had to
sive hopelessness tends to be confined to those transform hope, which involved acknowledg-
who are depressed or have expressed a genuine ing life the way it is, searching for meaning and
desire for early death.42,43 Breitbart, et al.42 positive reappraisal.49 This conceptual clarifica-
reported that, in a group of 92 patients in a tion is critical, in that it offers insight into the
palliative care inpatient facility, 17% were clas- potency of hopelessness as an experience that
sified as having a high desire for hastened death can undermine a sense that life has ongoing
and 16% met criteria for a current major de- value or intrinsic worth. This clarity also has
pressive episode. Desire for hastened death was implications regarding therapeutic options that
significantly associated with clinical depression might engender a sense of meaning and pur-
(P ⫽ 0.001) and hopelessness (P ⬍ 0.001), with pose for patients expressing overwhelming
both providing independent, unique contribu- hopelessness (see Opportunities for Interven-
tions to the prediction of desire for hastened tions to Reduce Suffering).
death. Chochinov, et al.43 found that hopeless- Other investigators have begun to make a
ness was more highly correlated with suicidal connection between hope, meaning, and pur-
ideation than was depression, thus providing an pose. For example, in their study of Japanese
important clinical marker for patients harboring hospice patients, Morita, et al.40 identified
thoughts of early death. three factors—loss of autonomy, lowered self-
This connection between hopelessness and esteem, and hopelessness—in connection with
suicidal thinking begins to reveal the experien- existential distress. Of note, “meaninglessness
tial landscape of people approaching death. Be- in one’s present life” appeared within all three
sides its connection with depression, loss of factors, suggesting a conceptual conflation be-
hope— however that might be experienced by tween hopelessness and meaning. Kissane and
someone facing a life-limiting illness—seems colleagues50 have introduced the concept of
closely aligned with a wish to die. This con- demoralization syndrome, in which the core
clusion is supported by Wilson, et al.44 They features consist of hopelessness, loss of mean-
reported that terminally ill patients who would ing, and existential distress. They suggest this
elect death-hastening measures, if legally avail- syndrome can be associated with chronic med-

90 CA A Cancer Journal for Clinicians

ical illness, disability, bodily disfigurement, fear be an important theme related to quality of life,
of loss of dignity, social isolation, and feelings optimal palliative care, and maintenance of dig-
of greater dependency on others or the percep- nity at the end of life.9,52,53 Personal or indi-
tion of being a burden to others, especially vidual autonomy— especially in Western
where there is a subjective sense of incompe- society—is often conflated with the notion of
tence. They further suggest that a sense of being a whole person, so that dependency can
impotence or helplessness will almost invari- be seen or experienced as threatening the in-
ably lead to a desire to die or suicidal ideation. tegrity of personhood itself. Therefore, a bad
Finally, Lin and Bauer-Wu51 conducted an death is frequently characterized by “feeling a
integrative literature review, examining the burden to others” and is often invoked in mat-
psychospiritual well-being of terminally ill peo- ters pertaining to suicide or requests for has-
ple with advanced cancer. They identified 43 tened death among patients with advanced
primary research studies, within which six ma- disease.
jor themes emerged: self-awareness, coping and According to reports from family members
adjusting effectively with stress, relationships of patients who had died after having previ-
and connectedness with others, sense of faith, ously expressed a wish for hastened death, 58%
sense of empowerment and confidence, and to 94% were distressed about being a burden to
living with meaning and hope. The conflation others.54,55 Physicians who had been asked to
of these latter terms—meaning and hope— assist with death-hastening measures indicated
again speaks to their conceptual overlap. Pa- that patients’ concerns about being a burden to
tients with an enhanced sense of psychospiritual others was a motivating factor in 41% to 75% of
well-being were reportedly better able to cope requests.56 –58 Among dying patients who ac-
effectively with the process of terminal illness tually killed themselves, feeling a sense of bur-
and to find meaning in the experience. Along den to others was almost universal.59,60 Data
with family and social support, prognostic from Oregon indicates that 63% of patients
awareness, and autonomy, “hope and meaning who received a hastened death under that
in life” contributed to positive psychospiritual state’s Death with Dignity Act had expressed a
well-being, whereas emotional distress, anxi- strong sense of having become a significant
ety, helplessness, hopelessness, and fear of death burden to their family, friends, or caregivers.61
detracted from it. This review, along with the The authors further report that this motivation
other studies cited, suggests that enhancing psy- for death-hastening practices is becoming more
chospiritual well-being, in part, rests on under- prominent over time.
standing the nature of hope and the extent to Wilson, et al.62 conducted one of the few
which loss of meaning and purpose can under- studies to directly examine the notion of bur-
mine a patient’s sense of life’s value or worth. den to others among a group of 69 patients
Interventional strategies sensitive to this exis- with advanced cancer. A sense of burden to
tential landscape must target hopelessness to others was common in this group of patients:
effectively contribute to positive patient out- 39% reported a minimal to moderate concern
comes. and 38% reported moderate to severe levels of
distress around being a burden to others,
Burden to Others whereas only 23% reported that they experi-
enced no sense of burden. Burden to others
Self-perceived burden has been described as had very little correlation with physical symp-
“a multidimensional construct arising from the toms, somewhat higher correlations with
care-recipient’s feelings of dependence and the psychological symptoms, and the highest cor-
resulting frustration and worry, which then relations with existential issues, including loss
lead to negative feelings of guilt at being re- of dignity (r ⫽ 0.49, P ⱕ 0.01), hopelessness (r
sponsible for the caregiver’s hardship.”52 ⫽ 0.46, P ⬍ 0.01), and loss of control (r ⫽
Among patients with life-threatening illness, 0.45, P ⱕ 0.01). They also reported modest,
sensing oneself as a burden to others seems to significant correlations between burden to oth-

Volume 56 Y Number 2 Y March/April 2006 91

ers and desire for death and suicidal ideation. studies have reported that loss of dignity is very
Multiple regression modeling confirmed the closely linked to why patients have either
association between burden to others and dig- sought or, in some instances, received death-
nity, with dignity entering as the first predictor hastening assistance.62,69 –71 According to a US
variable of burden to others. survey of physician-assisted suicide and eutha-
If dignity can be understood as deserving nasia, loss of dignity was the reason cited by
honor, respect, or esteem,63 its conceptual physicians in 53% of cases where prescriptions
overlap with burden to others suggests a self had been written for the purpose of hastening
perception wherein patients no longer consider death (second only to discomfort other than
themselves worthy of these attributes. Sensing pain in 79% of cases).71
they no longer have value, meaning, or pur- Historically, the topic of dignity has not
pose—and therefore are unworthy of honor, been extensively researched and has tended to
respect, or esteem—patients with advanced ill- enter palliative care discourse in the context of
ness may perceive their neediness or depen- social policy, philosophical, or religious con-
dency as unfolding in a context shaped by an siderations. Thus, although many palliative
inability to give anything in return. This per- caregivers purport to deliver care that preserves
ception of needing to take, while feeling they dignity, little empirical data has been available
have little to give back, further clarifies the to guide them on how to achieve this particular
psychological landscape of “sense of burden to goal. Over the last decade, several studies have
others.” examined some of the factors that might sup-
port, or undermine, a dying patient’s sense of
Loss of Sense of Dignity dignity.3,46,72–75 A qualitative study of dying
patients produced an empirically based model
Palliative care has been characterized as care of dignity in the terminally ill.3,46 This model
that “honors and protects those who are dying, provides insight into what influences a patient’s
and conveys by word and action that dignity wish to go on living in the face of their im-
resides in people.”7 Most palliative care pro- pending death and establishes the foundation
viders would claim that dignity is an overarch- for a model of palliative care, coined dignity-
ing value or goal, which shapes the delivery of conserving care.3 This model provides therapeu-
service to dying patients and their families. For tic direction for health professionals, advising
some patients, a sense of dignity is indivisible they pay heed to a broad range of physical,
from their core being or essence. The notion of psychological, social, and spiritual/ existential
“basic dignity” has been described as a universal issues that may affect individual patient percep-
moral quality that is internally held and inalien- tions of dignity.
able from life itself.64,65 “Personal dignity,” on The Dignity Model consists of three major
the other hand, is frequently invoked in refer- categories including: 1) illness-related issues per-
ence to the potential indignities of death and taining to bodily concerns or problems; 2)
dying.3,65,66 Personal dignity is individualistic, dignity-conserving repertoire pertaining to the
transient, and often tied to personal goals and patient’s psychological makeup and spiritual be-
social circumstances. When individual auton- liefs; and 3) the social dignity inventory, referring
omy is conflated with the notion of dignity, the to external influences affecting dignity (Figure
inability to maintain independence while dying 1).46 These categories refer to broad issues that
may be experienced as a fundamental loss of determine how individuals experience a sense of
dignity, undermining the value of life itself.3 dignity as death approaches. Each category con-
The term dignity has become highly politi- tains several carefully defined themes and sub-
cized and is frequently invoked as justification themes, enhancing our understanding of dignity
for various end-of-life care practices and poli- considerations among the dying.
cies. In many circles, the term “death with Illness-related concerns are issues that result
dignity” is synonymous with the right to as- from the illness itself and threaten to, or actu-
sisted suicide and euthanasia.62,67–70 Several ally do, impinge on the patient’s sense of dig-

92 CA A Cancer Journal for Clinicians

FIGURE 1 The Dignity Model. Reprinted from Chochinov et al,46 with permission from Elsevier.

nity. Their defining characteristic is that they ing independence.

are mediated via the illness and are very specific Y Maintaining hope: an ability to see life as
to the patient’s illness experience. The two enduring, with sustained meaning or pur-
broad themes within this category consist of pose.
“level of independence,” (which is determined Y Autonomy/control: the sense that one can
by an ability to maintain cognitive acuity, as influence or direct one’s life circumstances.
well as “functional capacity,” referring to the Y Acceptance: the internal process of resigning
ability to perform daily living tasks) and “symp- oneself to changing life circumstances, in the
tom distress.” Symptom distress is divided into attempt to maintain one’s sense of dignity.
physical distress and psychological distress, with Y Resilience/fighting spirit: the mental determi-
the latter including uncertainty (the distress as- nation some patients exercise to overcome
sociated with the uncertainties of one’s health their illness-related concerns or optimize their
status) and death anxiety (worry or fear specif- quality of life.
ically associated with the process or anticipa- Dignity-conserving practices consist of “liv-
tion of death and dying). ing in the moment,” focusing on immediate
The dignity-conserving repertoire is comprised issues in the service of not worrying about the
of two major themes: dignity-conserving per- future; “maintaining normalcy,” or carrying on
spectives and dignity-conserving practices. The usual routines and schedules while coping with
former are internally held qualities or views of the physical and emotional challenges of being
one’s place in the world, and include the sub- ill; and “seeking spiritual comfort,” which is
themes: turning toward or finding solace within one’s
Y Continuity of self: the sense that the essence religious or spiritual belief system.
of who one is continues to remain intact. The social dignity inventory refers to the qual-
Y Role preservation: an ability to continue func- ity of interactions with others that enhance or
tioning in usual roles as a way of maintaining detract from a sense of dignity. The defining
congruence with prior views of oneself. characteristic of this inventory is that it refers to
Y Generativity/legacy: the sense that one will external sources or issues that might impinge
leave behind something lasting and tran- on a patient’s sense of dignity. Five primary
scendent of death. inventory themes were identified:
Y Maintaining pride: the ability to maintain Y Privacy boundaries: the extent to which dig-
positive self-regard in the face of diminish- nity can be influenced by encroachments

Volume 56 Y Number 2 Y March/April 2006 93

one’s personal environment during the Dignity Therapy). For example, under the sub-
course of receiving care or support. themes of “continuity of self,” “maintaining
Y Social support: the presence of an available pride,” and “role preservation,” the therapeutic
and helpful community of friends, family, or correlate is listed as “see[ing] the patient as
health care providers. worthy of honor, respect, and esteem” by way
Y Care tenor: the attitude others demonstrate of asking them things that are personally defin-
when interacting with the patient. ing. Many would see these as the “niceties” of
Y Burden to others: the distress engendered by care, which may or may not occur depending
having to rely on others for various aspects on the competing interests of providing pallia-
of personal care or management. tion. Yet, acknowledging patients as whole
Y Aftermath concerns: the worry or fears associ- persons is one of the most ardent predictors of
ated with anticipating the future burden or maintaining dignity.3,72,73 In other words,
challenges that dying will impose on others. finding out who the patient is as a person, what
The model highlights how dying patients is important to them, and what they value are
may experience a waning of their dignity and, as central to dignity-conserving care as any
in turn, provides direction for how to construct other aspect of quality end-of-life care.
dignity-enhancing interventions for patients The social dignity inventory contains various
nearing death (Table 2). subthemes that are externally mediated, with
The Dignity Model can be thought of as a dignity-related implications. The subtheme “care
therapeutic map, guiding clinicians to find in- tenor” refers to the tone of care that might influ-
terventional strategies or insights based on each ence perceptions of dignity, with each patient
of the themes and subthemes subsumed within encounter being an opportunity to support, or
the model (Table 2). Although this has been undermine, their sense of dignity. At some level,
extensively described elsewhere, a few illustra- patients are looking for affirmation regarding their
tive examples may highlight its clinical utili- sense of worth, in spite of their dyspnea, incon-
ty.3,46,72,73 Within the broad theme of illness- tinence, or disfigurement. The therapeutic corre-
related concerns, medical uncertainty and lates of care tenor would include a range of
death anxiety are listed as sources of distress that subtleties that would convey such affirmation. Do
would precipitate enquiry such as “is there you stand at the doorway of their room or do you
anything further about your illness that you enter and take a seat? Do you meet their gaze or
would like to know” or “if you are getting all do you avert it? Do you include them in
the information you feel you need.” For some decision-making conversations or so you auto-
patients, knowing the details of their condition matically exclude them or defer to others? In
and how death will arrive is part of a dignity- other words, are you able to see and acknowledge
conserving strategy. Case in point: the most the person beyond even the most overwhelming
frequently downloaded article at the Canadian of symptoms? Again, although this is often pejo-
Virtual Hospice, a national web-based network ratively consigned to the realm of the “touchy-
of information and support for dying patients, feely,” evidence would suggest that it lies at the
their families, care providers, and volunteers, is heart of being able to truly accomplish dignity-
one entitled “When Death is Near.”76 This conserving care.3,72,73
article describes the physical changes associated Quantitative approaches, while asking dying
with dying and the progression of changes as patients to rate their sense of dignity, have also
death approaches. Clearly, for many patients examined the correlates of dignity. Within a
and families, being able to access such informa- cohort of 213 terminally ill cancer patients,
tion and knowing the contingencies invoked in nearly half indicated they experienced some, or
response to any crises are critical aspects of a occasional, dignity-related concerns. Com-
dignity-conserving strategy. pared with patients whose dignity was intact,
Under the heading “dignity-conserving rep- patients with significant dignity-related con-
ertoire,” various subthemes point to a variety cerns reported that they had increased pain,
of therapeutic insights and strategies (eg, see decreased quality of life, difficulty with bowel

94 CA A Cancer Journal for Clinicians

TABLE 2 Diagnostic Questions and Examples of Therapeutic Interventions to Conserve Dignity3

Diagnostic Questions Therapeutic Interventions

Illness-related concerns
Symptom distress
Physical distress “How comfortable are you? Is there anything we Vigilance to symptom management; frequent assessment,
can do to make you feel more comfortable?” 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 Upon request, provide accurate, understandable
to know? Are you getting all the information you feel you information, and strategies to deal with possible future
need?” crises.
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
medication(s).
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.
affect?” 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 Allow the patient to participate in normal routines, or take
offer you comfort?” 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 Make referrals to chaplain or spiritual leader; enable the
connected with, or would like to be connected with?” 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 Liberal policies about visitation, rooming in; enlisting
your closest confidante?” involvement of a wide support network.
Care tenor “Is there anything in the way you are treated that is Treat the patient as worthy of honor, esteem and respect;
undermining your sense of dignity?” adopt a stance conveying this.
Burden to others “Do you worry about being a burden to others? If so, to whom Encourage explicit discussion about these concerns, with
and in what ways?” 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
behind?” advanced directive, making a will, funeral planning.

functioning, and were dependent on others and the way in which patients experience
(bathing, dressing, and incontinence issues). themselves to be seen or appreciated, as pow-
These patients also reported a loss of will to erful mediators of preservation of one’s sense of
live, increased desire for death, depression, dignity.72,73 The data suggest that listening to
hopelessness, and anxiety.72 These studies have patients, validating their concerns, and ascrib-
established the importance of self perception, ing meaning to their experience may engender

Volume 56 Y Number 2 Y March/April 2006 95

hope and ultimately bolster dignity toward the hastened death, whereas only 12% without a
end of life. Each encounter with a patient thus desire for death met criteria for depression.
provides an opportunity to affirm their sense of Patients with major depression were four times
worth: “The reflection that patients see of more likely to have a high desire for hastened
themselves in the eye of the provider must death, whereas no significant association with
ultimately affirm their sense of dignity. At least present pain intensity was found. Again, the
in part, it would appear, dignity resides in the psychological influence on desire for death was
eye of the beholder.”73 reported to be paramount.
Few studies have directly examined the con-
Desire for Death/Loss of Will to Live struct of “will to live” among patients nearing
the end of life. A study of 168 terminally ill
To some degree, the loss of will to live or a cancer patients—seen within a tertiary care pal-
mounting desire to die may be a litmus test for liative care unit—found that will to live, mea-
quality end-of-life care. Although in some in- sured twice daily using visual analog scales,
stances it may represent a growing acceptance tended to fluctuate rapidly, even over very brief
or readiness to die, most empirical data has time intervals.78 During the transition between
connected loss of will to live and desire for community living and inpatient palliative care,
death—along with interest in euthanasia or as- anxiety accounted for most of the fluctuation
sisted suicide—with various forms of end-of- or variance in will to live; once patients had
life distress. One study of 200 terminally ill been hospitalized for several days, depression
patients in a palliative care facility reported that accounted for most variance in will to live.
44.5% acknowledged at least a fleeting desire to Finally, as death drew nearer, physical symp-
die.77 In most instances, these episodes were tom distress—particularly dyspnea—accounted
brief and did not reflect a sustained or commit- for most of the variance in will to live. Further
ted desire to die. Seventeen patients (8.5%), studies reveal that the majority of patients (ie,
however, reported an unequivocal and consis- 58%) maintain a high will to live even as they
tently held desire for death to come soon. are approaching death. Some maintain a mod-
Within this group, 59% received a diagnosis of erate level of will to live (11%), some patients
depression, compared with 8% in patients who lose their will to live as death draws nearer
did not endorse a genuine, consistent desire for (18%), whereas a minority actually gain their
death. Patients with depression were approxi- will to live (10%), likely as a result of reduced
mately six to seven times more likely to have a symptom distress.79 Finally, a small but inter-
desire for hastened death than patients without esting minority (3%) demonstrate a consistent,
depression. Patients with a desire for death low will to live; these patients were signifi-
were also significantly more likely to experi- cantly more likely to report anxiety, nausea,
ence pain and less social support than those dyspnea, and least likely to be married or living
patients without a desire for death. Logistic with a partner. Again, this evidence suggests
modeling of the data revealed that depression that for many—although certainly not all—loss
was the only significant predictor of desire for of will to live is a reflection of underlying
death in this patient population. This under- psychological, physical, and socially mediated
scores the importance of psychological vari- distress.
ables in understanding the notion of desire for A more recent study examined a broader
death in the face of a life-limiting illness. range of concurrent influences on the will to
A more recent study of 92 terminally ill live in 189 patients with end-stage cancer.80
cancer patients reported similar findings.42 The authors reported significant correlations
Within this cohort, 16 patients (17%) were between will to live and existential, psycholog-
classified as having a high desire for death, with ical, social, and (to a lesser degree) physical
16% meeting criteria for a major depressive sources of distress. Existential variables proved
episode. Among the depressed patients, seven to have the most influence, including hopeless-
(47%) were classified as having a high desire for ness, burden to others, and sense of dignity.

96 CA A Cancer Journal for Clinicians

Although it may be difficult to disentangle var- tered from terminally ill patients: meaning,
ious sources of suffering such as depression, death and dying, pain and illness, relationships,
hopelessness, despair, pain, or even the effects and religious issues. Religious issues accounted
of social isolation in the context of end-of-life for only 8% of these questions. Grant83 identi-
care, these findings speak to the importance of fied five “spiritual interventions” used by nurs-
existential issues within the experiential land- es: holding a patient’s hand, listening, laughter,
scape of patients nearing death. prayer, and being present with a patient. Over
90% of 299 nurse respondents indicated that
they would offer, suggest, or provide spiritual
OPPORTUNITIES FOR INTERVENTIONS TO help in the following situations: when a patient
REDUCE SUFFERING explicitly requests spiritual support, is about to
die, is grieving, or receives bad news.
Palliative care aims to improve quality of The very act of acknowledging spiritual or
life, enhance spiritual or existential well-being, existential distress appears to be interventional.
and reduce suffering. It embodies an approach Such acknowledgment, however, requires be-
to the care of the dying, rather than simply a ing able to find appropriate language that pa-
prescribed set of treatment modalities. More- tients and physicians find comfortable and
over, this approach is holistic, in that it includes accessible. Some authors emphasize the impor-
and extends beyond the attenuation of physical tance of having a framework to guide the as-
symptoms, encompassing psychosocial, exis- sessment of spiritual well being. Puchalski and
tential, and spiritual aspects of each person’s Romer84 recommend the mnemonic device
unique illness experience. Recent research has FICA as a way of structuring spiritual inquiry.
begun to demonstrate the value of various in- FICA stands for: Faith or beliefs, Importance
terventional approaches in addressing these fac- and influence, Community, and Address.
ets of end-of-life care. Some of the specific questions in each category
include: What is your faith or belief? What role
General Approaches to Care do your beliefs play in regaining your health?
Are you part of a spiritual or religious commu-
Palliative care, in and of itself, has been nity? How should these issues be addressed by
shown to have salutary effects that extend well your health care provider?
beyond the purview of physical symptom con- Rousseau85 offers practical guidance for
trol. Cohen, et al.81 studied quality of life in 88 treating spiritual or existential suffering among
patients admitted to palliative care units in two dying patients. He describes a framework that
distinct regions of Canada. The McGill includes: controlling physical symptoms; pro-
Quality-of-Life Questionnaire and semistruc- viding a supportive presence; encouraging life
tured interviews were administered to patients review to help the patient recognize purpose,
when they were admitted to a palliative care value, and meaning; exploring guilt, remorse,
unit and again 7 to 8 days later. Significant forgiveness, and reconciliation; facilitating reli-
improvements in quality-of-life scores (includ- gious expression; and focusing on meditative
ing subscore improvements on physical, psy- practices that promote healing rather than cure.
chological, and existential well-being) were Whether using formatted approaches or more
demonstrated. These findings suggest that pal- open-ended questioning, the goal is to demon-
liative care is an effective, holistic intervention strate openness to ongoing dialogue regarding
that mitigates suffering across a broad spectrum spiritual or existential concerns, however pa-
of end-of-life concerns. tients happen to frame or define them.
A Swedish survey82 of hospital chaplains Chochinov and colleagues86 reviewed vari-
concluded that physicians and other profession- ous psychotherapeutic approaches in the con-
als should be able to address many of the ques- text of end-of-life care. The mainstay of
tions posed to chaplains. Chaplains identified therapy for terminally ill patients is supportive
five main categories of questions they encoun- therapy, which aims to bolster adaptive coping

Volume 56 Y Number 2 Y March/April 2006 97

mechanisms, minimize maladaptive ones, and counseling for spiritual support; promoting
when possible, attenuate anxiety and fear. supportive relationships and use of volunteers;
Other interventions, such as insight-oriented conducting family meetings to enhance family
therapy or interpersonal therapy, are limited in functioning; and reviewing goals of care in
their application with dying patients because of multidisciplinary team meetings. Future studies
a longer time frame often embedded within of this interventional approach will determine
these approaches. its feasibility and efficacy in this patient popu-
In a review of psychotherapeutic interven- lation.
tions for cancer patients, Breitbart concludes
that, in populations of early-stage cancer pa- Specific Approaches to Care
tients and in patients with advanced disease,
group psychotherapy is an effective means of Thus far, we have described therapeutic ap-
improving quality of life and reducing psycho- proaches that are general in nature. Few spe-
logical distress, anxiety and depression, and cific interventions addressing spiritual or
physical symptoms.87 These group therapy ap- existential suffering at the end of life have been
proaches primarily fall within the categories of developed and tested. Some, at various stages
patient education, supportive-expressive inter- within the process of being tested, are de-
ventions that encourage the expression of scribed briefly below.
feelings toward illness and changing life cir- One pilot psychotherapy program integrates
cumstances, and cognitive-behavioral inter- spiritual issues and resources for people diag-
ventions. As Breitbart notes, however, few nosed with cancer.90 It aims to address four
cancer group psychotherapy intervention trials concerns: control, identity, relationships, and
have focused specifically on existential or spir- meaning. In psychotherapeutic groups, partic-
itual themes. ipants are asked to reflect on the four thematic
Kearney and Mount28 describe “surface- spiritual issues and draw on internal spiritual
work” and “depth-work” as psychotherapeutic resources that support adaptive coping. The
responses to spiritual or existential pain. language used in the therapy sessions is overtly
Surface-work refers to interventions aimed at religious. For example, therapists encourage
alleviating distress at the conscious or concrete participants to visualize God’s presence and to
level of the individual’s experience. Depth- view God as a partner in their group therapy
work is an approach that moves a person to- work. A study is currently underway to assess
ward deeper levels of the psyche, helping the the efficacy of this program. An important lim-
individual reconnect with simple and ordinary itation of this approach may be its inaccessibil-
aspects of life that they once found significant. ity to patients who do not believe in God, or
Examples of depth-work interventions include whose religion is not of the Judeo-Christian
art and music therapy, image work, dream tradition. It is also not clear whether the ther-
work, and certain types of meditation. apy would be appropriate for people in the late
Clark and Kissane88 advocate the adoption stages of their illness.
of demoralization syndrome as a relevant pal- Miller and colleagues91 describe a supportive-
liative care diagnosis, defined as “a psychiatric affective program focusing on spirit, emotions,
state in which hopelessness, helplessness, mean- and relationships. The program targets adults ex-
inglessness, and existential distress are the core periencing heart or lung disorders, HIV/AIDS,
phenomena.”89 Treatment consists of the fol- cancer, or geriatric frailty, with a life expectancy
lowing elements: providing continuity of care of at least 6 months but likely not more than 24
and active symptom management; exploring months. Special attention is devoted to the needs
attitudes toward hope and meaning in life; bal- of African American patients and their caregivers.
ancing support for grief with promotion of Participants meet for monthly group discussions
hope; fostering the search for renewed purpose and are encouraged to raise issues related to spir-
and role in life; using cognitive therapy to ituality, emotions, and relationships. The pro-
reframe negative beliefs; involving pastoral gram is designed to accommodate participants

98 CA A Cancer Journal for Clinicians

from diverse religious backgrounds and also pa- ercises are used in eight group sessions. Each
tients who do not participate in organized reli- session is organized around a specific meaning-
gion. A randomized controlled trial demonstrated centered theme. Because the therapists view
significant improvement on depression and mea- the search for meaning as a creative, individual,
sures of religious well-being, but not existential and active process, patients are encouraged to
well-being. Patients in the intervention groups be active participants in the group process.
were more likely to raise spiritual issues with their Preliminary evaluation points to favorable re-
primary physician. Depression symptoms were sults. Before the intervention, approximately
reduced in the intervention group compared 40% of study participants did not report a sense
with controls, but this did not reach statistical of meaning or purpose in their lives. Postint-
significance. State anxiety remained unchanged. ervention, none of the participants perceived
Positive changes in religious and existential spir- life as meaningless; at 2-month follow up, ben-
itual well-being also did not reach statistical sig- eficial treatment effects continued to mount. A
nificance. Death meaninglessness, however, was version of this intervention for individual use is
significantly lower at posttest in the intervention currently being developed.95
group. When noncompliant patients were with- Based on the previously described Dignity
drawn from the analysis, the effects for depression Model, Chochinov and colleagues75 devel-
and spiritual well-being were statistically signifi- oped a therapeutic intervention called “Dig-
cant and the effect for death meaninglessness re- nity Therapy,” targeting depression and
mained positive. Despite several limitations suffering in palliative care patients. Briefly,
associated with this study, the authors believe it Dignity Therapy poses questions that offer an
offers qualified support for the intervention’s opportunity for patients to address aspects of
ability to reduce depressive symptoms and death- life that they feel were most important or
related feelings of meaninglessness while increas- were most meaningful; the personal history
ing spiritual well-being. they most want remembered; or things that
Spira and Breitbart35,92,93 address spiritual suf- need to be said (Table 3). Within a Phase I
fering in ambulatory advanced cancer patients trial of Dignity Therapy, this intervention
with meaning-centered group psychotherapy. was carried out by psychiatrists, psycholo-
This therapeutic approach is based on the work of gists, and experienced palliative care nurses.
existential psychotherapist Viktor Frankl.94 Ac- Dignity therapy allows the patient to address
cording to Frankl, meaning (or sensing that life grief-related issues, offer comfort to the
has meaning) requires the conviction that one is soon-to-be bereft loved ones, or provide in-
fulfilling a unique role and purpose. With this structions to friends and family. The sessions
comes the responsibility to live to one’s full po- (usually not more than two, each less than
tential as a human being, thus achieving a sense of 1-hour duration) are tape recorded, tran-
peace, contentment, or even transcendence scribed and edited, and then returned to the
through connectedness with something greater patient. This creates a tangible product—a
than oneself. The primary tenet of Frankl’s logo- legacy or generativity document—that, in
therapy is that people always have control over effect, allows the patient to leave behind
their attitude or outlook, no matter how enor- something that is permanent or lasting; in
mous the adversity. Logotherapy aims to decrease most instances this is bequeathed to a family
patients’ suffering and have them live life to its member. In contrast to other psychothera-
fullest, by engaging in activities that engender the pies, Dignity Therapy is brief, can be done at
greatest amount of meaning and purpose. the bedside, and aims to affect both patients
Meaning-centered group psychotherapy and their loved ones.
aims to help participants sustain or enhance a Chochinov and colleagues75 found that of 100
sense of meaning, peace, and purpose in their terminally ill patients who took part in Dignity
lives, and to make the most of each group Therapy, 91% reported being satisfied. Addition-
member’s remaining time.93,95 A combination ally, a heightened sense of dignity was found in
of instruction, discussion, and experiential ex- 76% of patients, an increased sense of purpose in

Volume 56 Y Number 2 Y March/April 2006 99

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?

68%, a heightened sense of meaning in 67%, an world through spiritual transformation, reli-
increased will to live in 47%, and 81% reported gious conversion, or existential change may
that it had been (or would be) of help to their be more significant than the specific content
family. Postintervention measures of suffering by which that need is filled.”96
showed significant improvement (P ⫽ 0.023) and
reduced depressive symptoms (P ⫽0.05). Patients
who felt Dignity Therapy helped their family CONCLUSION

reported feeling life was more meaningful (r ⫽

0.480; P ⬍ 0.0001), accompanied by a height- In his extensive writings on despair at the
ened sense of purpose (r ⫽ 0.562; P ⬍ 0.0001), end of life, Eric Cassel97 suggests that suffer-
will to live (r ⫽ 0.387; P ⬍ 0.0001), and a ing is proportionate to the extent that an
lessened sense of suffering (r ⫽ 0.327; P ⫽ 0.001). individual’s sense of self or personhood un-
The salutary effects of enabling dying patients to dergoes, or is threatened by, disintegration.
attend to the well-being of loved ones may help Yet, for patients approaching death, these
explain the ability of Dignity Therapy to reduce assaults on personhood are often unavoid-
suffering and distress at the end of life. able. The process of dying sees mounting
Dignity Therapy and meaning-centered vulnerability punctuated by increasingly dif-
group psychotherapy have shown initial ficult physical, psychosocial, and spiritual/
promise, and are currently undergoing more existential challenges. Patients may struggle
rigorous testing using a randomized con- to locate a sense of self that is unencumbered
trolled trial design. Although these interven- by illness. In many instances, they will un-
tions aim to bolster dignity, hope, and dergo a gradual redefining of self and per-
meaning, their ability to reduce existential or sonal expectations shaped by the daily
spiritual distress is independent of any ex- realities of accommodating to deteriorating
plicit religious or faith-based focus. Whether health. In turn, health care providers com-
religious or secular in nature, approaches that mitted to dignity-conserving care must find
guide or shape spiritual or existential care ways of responding to patients— or rather to
need to be evaluated to answer the question whole persons—that are not solely defined
of their feasibility and efficacy. How we by the exigencies of the underlying illness.
broach these aspects of care—including the Within the field of palliative care, developing
language we use to frame these issues—also compassionate and effective responses, which
needs to be evaluated, to assure that patients are individually tailored and sensitive to a
are approached in a way that is comfortable patient’s fluctuating deteriorating health sta-
and accessible, regardless of individual reli- tus, is a critical challenge.
gious or secular orientation. Ultimately, Significant advances have been made in the
however, as Marrone notes, “in the midst of area of palliative symptom management. Yet, a
dealing with profound loss in our lives, the mechanistic or technological paradigm is too nar-
ability to reascribe meaning to a changed row to encompass the full potential of palliative

100 CA A Cancer Journal for Clinicians

care, which aims to deliver holistic, compassion- meaning, and lessen suffering for patients nearing
ate, and medically savvy end-of-life care. These death. In this way, and in accordance with the
attributes are by no means mutually exclusive vision of the late Dame Cicely Saunders, pallia-
and, in fact, are highly interdependent within a tive care “will do all [it] can, not only to help you
dignity-conserving model of care. Nowhere is die peacefully, but also to live until you die.”
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- ACKNOWLEDGMENTS
quires insight into the complete landscape of a
dying patient’s experience. Within the new ho- The author gratefully acknowledges the
rizons of palliative care, these insights will provide assistance of his research nurse, Beverley J.
the foundation for novel and compassionate ap- Cann, RN, MN, in helping to prepare this
proaches, intended to bolster hope, enhance manuscript.

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Dying, Dignity, and New Horizons in Palliative End of Life Care

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Dying, Dignity, and New Horizons in Palliative End of Life Care

Uploaded by

Palliative End-of-Life Care

Dying, Dignity, and New Horizons in

Dr. Chochinov is Canada Research

84 CA A Cancer Journal for Clinicians

Volume 56 Y Number 2 Y March/April 2006 85

86 CA A Cancer Journal for Clinicians

TABLE 1 Additional Palliative Care/Psychiatry References

Volume 56 Y Number 2 Y March/April 2006 87

Spirituality and Existentialism itual dimensions of end-of-life experience. Be-

88 CA A Cancer Journal for Clinicians

Volume 56 Y Number 2 Y March/April 2006 89

Hopelessness able, were more likely than other participants

90 CA A Cancer Journal for Clinicians

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92 CA A Cancer Journal for Clinicians

nity. Their defining characteristic is that they ing independence.

Volume 56 Y Number 2 Y March/April 2006 93

94 CA A Cancer Journal for Clinicians

TABLE 2 Diagnostic Questions and Examples of Therapeutic Interventions to Conserve Dignity3

Diagnostic Questions Therapeutic Interventions

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96 CA A Cancer Journal for Clinicians

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98 CA A Cancer Journal for Clinicians

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TABLE 3 Dignity Psychotherapy Question Protocol

reported feeling life was more meaningful (r ⫽

100 CA A Cancer Journal for Clinicians

Volume 56 Y Number 2 Y March/April 2006 101

102 CA A Cancer Journal for Clinicians

Volume 56 Y Number 2 Y March/April 2006 103

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