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JOURNAL OF PALLIATIVE MEDICINE
Volume 8, Supplement 1, 2005
© Mary Ann Liebert, Inc.
Interventions to Enhance the Spiritual Aspects of Dying
HARVEY MAX CHOCHINOV, M.D., Ph.D., FRCPC
1
and BEVERLEY J. CANN, R.N., M.N.
2
ABSTRACT
In recent years, medical and allied health publications have begun to address various topics
on spirituality. Scholars have posited numerous definitions of spirituality and wrestled with
the notion of spiritual pain and suffering. Researchers have examined the relationship be-
tween spirituality and health and explored, among other topics, patients’ perceptions of their
spiritual needs, particularly at the end of life. This paper summarizes salient evidence per-
taining to spirituality, dying patients, their health care providers, and family or informal care-
givers. We examine the challenging issue of how to define spirituality, and provide a brief
overview of the state of evidence addressing interventions that may enhance or bolster spir-
itual aspects of dying. There are many pressing questions that need to be addressed within
the context of spiritual issues and end-of-life care. Efforts to understand more fully the con-
structs of spiritual well-being, transcendence, hope, meaning, and dignity, and to correlate
them with variables and outcomes such as quality of life, pain control, coping with loss, and
acceptance are warranted. Researchers should also frame these issues from both faith-based
and secular perspectives, differing professional viewpoints, and in diverse cultural settings.
In addition, longitudinal studies will enable patients’ changing experiences and needs to be
assessed over time. Research addressing spiritual dimensions of personhood offers an op-
portunity to expand the horizons of contemporary palliative care, thereby decreasing suffer-
ing and enhancing the quality of time remaining to those who are nearing death.
S-103
INTRODUCTION
I
N RECENT YEARS
, medical and allied health pub-
lications have begun to address various topics
on spirituality. Scholars have posited numerous
definitions of spirituality and wrestled with
the notion of spiritual pain and suffering. Re-
searchers have examined the relationship be-
tween spirituality and health and explored,
among other topics, patients’ perceptions of their
spiritual needs, particularly at the end of life.
This paper summarizes salient evidence per-
taining to spirituality, dying patients, their health
care providers, and family or informal caregivers.
We examine the challenging issue of how to de-
fine spirituality, and provide a brief overview of
the state of evidence addressing interventions that
may enhance or bolster spiritual aspects of dying.
Finally, we suggest several avenues for future
spiritually-focused research in end-of-life care.
SPIRITUALITY IN PALLIATIVE CARE
Among Western health practitioners, interest
in attending to the spiritual concerns of dying pa-
1
University of Manitoba, Manitoba Palliative Care Research Unit, Cancer Care Manitoba, Winnipeg, Manitoba,
Canada. Dr. Chochinov holds the Canada Research Chair in Palliative Care, funded by the Canadian Institutes of
Health Research.
2
Palliative Care Research Unit, Cancer Care Manitoba, Winnipeg, Manitoba, Canada.
tients is a relatively recent phenomenon. Al-
though religion and medicine were linked in an-
cient times, the Renaissance witnessed the sepa-
ration of science and religion.
1
Cartesian dualism,
the separation of body and mind, established a
paradigm in which science dealt with the physi-
cal world, whereas the noncorporeal, spiritual
realm was left to the clergy.
2
Certain conse-
quences naturally followed; for instance, “suffer-
ing” in modern medicine became understood
mostly in terms of its physical dimensions.
3
In-
deed, some argue that the ensuing scientific tra-
dition hampered our ability to empathize truly
with our patients.
4
This thinking continues to
dominate contemporary medicine, although its
edges have been blunted by ideas such as Engel’s
biopsychosocial model, which asserts that psy-
chological and social factors, in addition to bio-
logical factors, are responsible for disease pro-
cesses.
2
Despite this dualistic paradigm, the impor-
tance of spirituality in care of the dying is
increasingly acknowledged by clinicians, re-
searchers, and educators in end-of-life care. The
Institute of Medicine
5
lists spiritual well-being as
one of six domains of quality supportive care of
the dying. Some investigators suggest, therefore,
that there be routine inquiry by physicians about
the relevance of spirituality to the patient within
the context of taking a medical history.
6
Guidance
for discussing religious and spiritual issues with
dying patients has been published.
7,8
By 1999
nearly one half of 126 medical schools in the
United States taught courses on spirituality and
medicine,
9
and it was anticipated that by the turn
of the century most medical schools would have
similar courses.
10
Several standard palliative care
textbooks now include chapters on spiritual-
ity.
11,12
In a survey of empirical studies published
in leading palliative care journals between 1994
and 1998, 6.3% of studies included spiritual or re-
ligious variables, compared to 1% reported in a
similar study of the Journal of the American Med-
ical Association, The Lancet, and New England Jour-
nal of Medicine.
13
Spirituality and patient perspectives
There is evidence that some dying patients, and
those with life-threatening illnesses, would like
health practitioners to be attuned to their spiri-
tual needs. Post and colleagues
6
cite four Amer-
ican surveys of inpatient and ambulatory patient
samples in which patient acceptance of physician
inquiry into their spiritual needs and other spir-
itual matters were studied. Of the patients,
40–94% were interested in having their physi-
cians consider their spirituals needs. Variations
in regional religiosity may have accounted for the
variability in findings. A 1997 Gallup survey of a
representative sample of 1200 American adults
found that just over half of respondents antici-
pated a need for companionship and spiritual
support in their dying days. Although most
would look to their family (81%) or close friends
(61%) for these sources of comfort, 36% would
choose the clergy, and 30% would choose doctors
for such support. Nearly 40% of respondents in-
dicated that, if they were dying, having a doctor
who was spiritually attuned to them would be
very important.
14
Existential questions may be particularly rele-
vant to individuals facing life-threatening illness
or death. In one study, 16 hospice patients were
interviewed about their attitudes toward dis-
cussing spiritual issues with their physicians.
They had favorable attitudes toward religious or
spiritual discussions with doctors, but they did
not want to be “preached” to. Moreover, patients
indicated that they wanted to be treated as whole
persons and with sensitivity.
15
In Norway, 20 pa-
tients with advanced cancer were asked to re-
spond to the inclusion of faith as a topic in con-
versation with a medical oncologist. Of the 20
subjects, 18 expressed positive interest in an open
question about religious faith.
16
Moadel and colleagues
17
identified the nature,
prevalence, and correlates of spiritual and exis-
tential needs in 248 ethnically diverse, urban can-
cer outpatients in the U.S. They found that “un-
met spiritual or existential needs” ranged from
25% to 51%. In order of prevalence, patients
wanted help in overcoming fears (51%), finding
hope (42%) and meaning in life (40%), finding
spiritual resources (39%), and having someone to
talk with about the meaning of life and death
(25%). Patients reporting five or more needs were
more likely to be Hispanic or African American,
more recently diagnosed, and unmarried. Al-
though the authors discussed the implications for
developing interventions in this setting, the study
did not identify who patients would like to ad-
dress their spiritual needs.
Ehman and colleagues
18
studied a group of 177
ambulatory pulmonary outpatients regarding
their acceptance of a question introducing spiri-
CHOCHINOV AND CANN
S-104
tuality as part of the medical history. In all, 45%
reported that religious beliefs would influence
their medical decisions if they became gravely ill;
of those, 94% agreed or strongly agreed that doc-
tors should ask them whether they have such be-
liefs if they became gravely ill. Almost half of re-
spondents who did not have religious or spiritual
beliefs still agreed that doctors should ask about
them. Nearly one quarter of patients found the
idea of their physicians discussing religion or
spirituality with them objectionable, with just less
than 10% reporting strong reservations. The in-
vestigators did not pursue the rationale of the 13
respondents who expressed these reservations,
nor did the researchers report demographic char-
acteristics of this small group. They speculated
that respondents may have misunderstood the
question or were offended by even an interme-
diate question about spirituality.
Some studies regarding patient’s attitudes to-
wards spiritual dimensions of care are more
equiviocal. Murray and colleagues
19
compared
the spiritual needs of two groups of dying pa-
tients, namely, those with lung cancer and those
with end-stage heart failure. The authors noted
that the extent to which patients and their care-
givers wished to have spiritual care incorporated
into their health care was unclear, with people of-
ten expressing reluctance to raise spiritual issues
with “busy” health professionals.
Spirituality and health care provider perspectives
One study, a survey of family physicians and
adult outpatients in Vermont, reported signifi-
cant discrepancies between physicians and pa-
tients pertaining to beliefs in God, engaging in
regular prayer, and feeling close to God. Doctors
endorsed these beliefs or practices significantly
less often than patients (P 0.01). Nonetheless,
the majority of physician respondents made in-
quiries about their patients’ religious beliefs
either occasionally (77%) or frequently (10%).
20
A
recent survey of American physicians, conducted
by the National Opinion Research Center at the
University of Chicago, found that 81% of re-
spondents agreed that a patient’s spirituality
could directly affect clinical outcomes and 91%
agreed with the importance of doctors under-
standing the religious and spiritual beliefs of their
patients.
21
Similarly, a survey of members of the
American Academy of Family Physicians found
that 74% of respondents attended religious ser-
vices on a weekly or monthly basis, and 79% re-
ported a strong religious or spiritual orientation.
Only a small percentage (4.5%) reported that they
did not believe in God.
22
A survey of 231 family
physicians in Missouri indicated that 96% of re-
spondents considered spiritual well-being an im-
portant health component, 86% would refer hos-
pitalized patients with spiritual questions to
chaplains, and 58% agreed that physicians should
address patients’ spiritual concerns.
23
In addi-
tion, in one recent U.S. survey of 299 hospital-
based bedside nurses, between 92% and 100% of
respondents believed that spirituality could give
their patients inner peace, give them strength to
cope, bring about physical relaxation and self-
awareness, and give them a sense of connection
with others.
24
Of hospice social workers, 83% re-
ported that religion and spirituality were very to
extremely, important to their clients.
25
One argument for health care providers at-
tending to the spiritual needs of patients is the
possible connection between religion and health,
a relationship that has been investigated exten-
sively. Research has examined the relationship
between religion or spiritual beliefs and a variety
of issues, including patients’ reliance on health
professionals to meet their psychosocial needs
(depending on the patients’ degree of religious
faith),
26
coping behaviors,
27
bereavement,
28
and
morbidity and mortality.
The Ironson-Woods Spirituality/Religiousness
Index identified four factors associated with
longer survival in people living with HIV/AIDS:
sense of peace, faith in God, religious behavior,
and compassionate view of others. Long-term
survivors of AIDS, that is, individuals who lived
beyond twice the median expected survival time,
scored significantly higher on these factors than
did the HIV-positive comparison group.
29
In
1998, Larson and colleagues published a system-
atic analysis of 329 peer-reviewed studies and 35
review articles on religion or spirituality and
health.
30–34
A major conclusion drawn from the
review was that there is a positive association be-
tween religiosity or spirituality and health. How-
ever, the generalizability of the findings to
populations other than Caucasian, American,
Christian subjects is questioned.
35
Mortality re-
search over the last three decades demonstrates
significant associations between frequent atten-
dance at religious services and reduced risk of
early mortality.
36
A meta-analysis of data from 42
independent studies of the association of reli-
ENHANCING SPIRITUAL ASPECTS OF DYING
S-105
gious involvement and all causes of mortality
found that religious involvement was signifi-
cantly associated with lower mortality (odds ra-
tio 1.29).
37
On the other hand, religious distress
may put seriously ill patients at increased risk for
earlier death by as much as 28%, and persons who
refuse medical treatment for religious reasons
may incur higher mortality.
36
The robustness and
implications of these findings have been vigor-
ously debated.
38–41
Cohen and colleagues
42
establish the ethical
grounds for physician inquiry into patients’ reli-
gious and spiritual beliefs asserting that “the
question of whether religious and spiritual beliefs
improve [patient] outcomes is misplaced . . . The
real issue is not whether religious and spiritual
commitments improve patients’ health, but
rather whether physician inquiries into such com-
mitments honor patients as . . . whole and inte-
grated persons” (p. 32). Similarly, even in the face
of scientific evidence for the salutary effects of
spirituality, respect for patients as persons pro-
hibits proselytizing by physicians. As medicine
continues to move away from paternalism and to-
ward a partnership model with its attendant re-
spect and support for patient autonomy, respect
for patients’ values and beliefs is essential.
WHAT IS SPIRITUALITY?
Palliative care endeavors to attend to the whole
person. Inroads have been made in the areas of
physical and psychological symptom control as-
sociated with advanced disease in the final phase
of life, but there are aspects of suffering and dis-
tress toward the end of life that too often remain
beyond the abilities of contemporary palliative
care. To understand this more fully requires a
careful examination of the spiritual and existen-
tial domains of patients’ experiences. Although
these are always embedded within the complex-
ities of conventional symptom distress, dis-
cussing them separately, artificial though that
may be, offers an opportunity to explicate these
aspects of patients’ suffering.
Acknowledging a spiritual dimension to one’s
personhood may be relatively easy; defining
what that means, and examining it through a sci-
entific lens, is more challenging. Definitions of
spirituality abound. One comprehensive review
of the health literature documented 92 definitions
of spirituality. The authors identified seven defi-
nitional themes: relationship to God, a spiritual
being, a Higher Power, or a reality greater than
the self; not of the self; transcendence or con-
nectedness unrelated to a belief in a higher being;
existential, not of the material world; meaning
and purpose in life; life force of the person, inte-
grating aspect of the person; and summative de-
finitions that combined multiple themes.
43
Kearney and Mount
44
distinguish “the spiri-
tual” from “religion.” “The spirit is a dimension
of personhood . . . a part of our being. Religion,
on the other hand, is a construct of human mak-
ing that . . . enables conceptualization and ex-
pression of spirituality” (p. 359). According to
Rousseau,
2
“Religion encompasses structured be-
lief systems that address spiritual issues, often
with a code of ethical behavior and a philosophy”
(p. 2000). As a construct, it would appear that
spirituality is broader than religion.
45
Although
some authors have cautioned for the separation
of psychosocial from spiritual domains of care,
Brady and colleagues used the spirituality sub-
scale of the Functional Assessment of Chronic Ill-
ness Therapy (FACIT) Scale to show a unique as-
sociation with quality of life (QOL) within an
ethnically diverse sample of 1610 cancer patients,
which was equal in its association with physical
well-being.
46
Clearly, although parsing out these
domains provides an opportunity to discuss them
separately, they are overlapping, interconnected
constructs experienced by whole persons.
There is little empirical evidence available of
how dying patients define spirituality. However,
Chao and colleagues studied six Buddhist and
Christian terminally ill patients in Taiwan, ask-
ing them what the essence of spirituality meant
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 communion with a
higher being (faithfulness, hope, gratitude).
47
Hermann interviewed 19 hospice patients who,
after initially defining spirituality as relating to
God or religion, later acknowledged that spiritu-
ality was part of their total existence.
48
Increased secularism has witnessed diminu-
tion of the explicit and implicit religious conno-
tation associated with the term “spirituality.” In
the context of palliative care, spirituality “. . . has
come to describe the depth of human life, with
individuals seeking significance in their experi-
ences and in the relationships they share with
CHOCHINOV AND CANN
S-106
family and friends, with others who experience
illness, and with those engaged in their treatment
and support”(p. 954).
49
Within the religious realm
of this broad framework, spirituality aligns itself
with a sense of connectedness to a personal God,
whereas within the secular realm, it invokes a
search for significance and meaning. Although
the source or inspiration for such significance will
vary from person to person, what they hold in
common is their ability to imbue life with an over-
arching sense of purpose and meaning, including
a sustained investment in life itself.
Puchalski and Romer
50
emphasize the relation-
ship between spirituality and experiencing tran-
scendent meaning in life. Karasu
51
views spiritu-
ality as a construct that involves concepts of faith
and meaning. The faith component of spirituality
is most often associated with religion and reli-
gious belief, whereas the meaning component of
spirituality appears to be a more universal con-
cept that can exist in religious or nonreligious in-
dividuals. According to Frankl,
52
meaning, or
having a sense that one’s life has meaning, in-
volves the conviction that one is fulfilling a unique
role and purpose in a life that is a gift: a life that
comes with a responsibility to live to one’s full po-
tential as a human being, thereby achieving a
sense of peace, contentment, or even transcen-
dence through connectedness with something
greater than oneself.
Bergman sounds a cautionary note. Docu-
menting the shift in meaning of the spirituality
concept over the last 20 years, she calls spiritual-
ity a “glow-word,” occupying a niche once occu-
pied by the term “faith” or what sociologists once
called personal or invisible religion. She argues
that the term is variably applied as a vaguer syn-
onym for religion, the personal side of religion as
distinguished from organized religion, and that it
has taken over the existential core human di-
mension, once the domain of humanistic psy-
chology. She suggests that spirituality becomes a
“handy” term shifting its meaning with various
historical nuances and, consequently, may be-
come virtually meaningless.
53
McGrath suggests the need for a new language
to articulate spirituality and affirms the recent
move away from conflating religion with spiritu-
ality. She examined the concepts of spirituality
and spiritual pain among hospice patients, their
formal and informal caregivers, as well as cancer
survivors in Australia. Of 14 people living at home
with a prognosis of less than 6 months to live,
most did not seek religious comfort in response
to the challenge of their illness; a minority held
conventional religious beliefs. McGrath reports
that maintaining an intimate connection with life
through family, home, friends, leisure, and work
is just as vital spiritually to individuals as tran-
scendent meaning making (religious or other-
wise). She believes that her findings highlight the
importance of maintaining a clear distinction be-
tween religion and a more generalized notion of
spirituality, that is, finding meaning.
54,55
Palliative
care researchers may make this distinction more
frequently than other researchers who typically
have measured spirituality and religiosity in
terms of religious affiliation. Of 1117 empirical
studies published in five palliative medicine/hos-
pice journals, researchers assessed spirituality us-
ing variables such as spiritual well-being, mean-
ing or transcendence (32%), followed by religious
affiliation (29%), and spiritual/religious services
provided (19%).
13
Chochinov and colleagues have examined no-
tions of meaning and purpose, using the para-
digm of dignity. They have shown that patients
are readily able to access discussions pertaining
to dignity, which can include matters of spiritual
investment, meaning, purpose, and various other
social, physical, and existential considerations
relevant to dying with dignity.
56–58
Their work
has also demonstrated the connections between
existential considerations—such as hopelessness,
being a burden to others, and dignity—and a loss
of will to live.
59
If the essence of spirituality is
connectedness to something that imbues life with
a sense of purpose or meaning, a paucity of either
would logically correlate with a disinvestment in
life itself.
60,61
It is therefore consistent that spiri-
tual well-being may be a buffer against depres-
sion, hopelessness, and desire for death in pa-
tients with advanced cancer.
62–64
WHAT IS SPIRITUAL OR
EXISTENTIAL SUFFERING?
Just as the term spirituality needs definition, so
too do the terms “spiritual suffering” and “exis-
tential pain.” Spiritual pain may manifest itself as
symptoms in any area of a person’s experience—
physical (e.g., intractable pain), psychological
(e.g., anxiety, depression, hopelessness), religious
(e.g., crisis of faith), or social (e.g., disintegration
of human relationships). However, it is not pos-
ENHANCING SPIRITUAL ASPECTS OF DYING
S-107
sible to recognize spiritual pain on the basis of
symptoms alone; it is the combination of the
symptoms with characteristic descriptions and
behaviors that help identify this form of suffer-
ing.
44
As Cassell
65
describes it, “Suffering is ex-
perienced by persons, not merely by bodies, and
has its source in challenges that threaten the in-
tactness of the person as a complex social and
psychological entity. Suffering can include phys-
ical pain but is by no means limited to it” (p. 639).
One study asked hospital chaplains, palliative
care physicians, and pain specialists to define ex-
istential pain. In their definitions, chaplains more
often stressed issues of guilt and religious ques-
tions, whereas palliative care physicians related
existential pain to annihilation and impending
separation. Although some pain specialists em-
phasize that living is painful, they concluded that
existential pain is most often used as a metaphor
for suffering.
66
In a qualitative study of 12 sur-
vivors of hematological malignancies, McGrath
45
found that a key ingredient in the subjects’ spir-
itual pain was “the sense that the normal network
of relationships and experience with life is failing
to meet the individual’s needs, and thus the ex-
pected satisfaction and meaning-making from life
are not forthcoming” (p. 639).
Spiritual crisis towards the end of life some-
times takes the form of losing one’s will to live,
or expressing a heightened desire for death. A
great deal of work has been done in this area,
showing these are often, although not always, as-
sociated with a high prevalence of syndromal de-
pression, pain and a paucity of social support.
61,62
McClain and colleagues demonstrated significant
correlations between spiritual well-being and de-
sire for hastened death (r 0.51), hopelessness
(r 0.68), and suicidal ideation (r 0.41).
They concluded that spiritual well-being offered
some protection against end-of-life despair based
on the additional findings that depression was
significantly correlated with desire for hastened
death in patients low in spiritual well-being (r
0.40) but not in those high in spiritual well-being
(r 0.20).
64
Loss of dignity is also frequently
cited as the reason patients make (and in the
Dutch experience, receive) death hastening mea-
sures such as euthanasia or assisted sui-
cide.
61,67–70
Wilson and colleagues asked seventy
dying patients about whether they would choose
physician hastened death now, if it were avail-
able. Of the patients, 58% could imagine using it
under particular circumstances at some future
point in time, should they experience uncon-
trolled pain, severe physical symptoms, a dimin-
ished quality of life, or find themselves a burden
to others. In addition, 12% would have requested
a hastened death at the time of the interview, if
it were legally available, for reasons of drowsi-
ness, weakness, a sense of loss of control and loss
of interest, hopelessness, and a desire to die.
71
Re-
ports on the Death with Dignity Act in Oregon
indicate that patients who sought out a hastened
death did so largely because of suffering based
on a perception of lost autonomy and loss of con-
trol.
72,73
In fact, every study reporting on the ex-
periences of patients who chose, or expressed an
interest in death-hastening measures, indicates
that the most salient issues refer to suffering and
its various dimensions (loss of autonomy, loss of
control, fear of being a burden to others, hope-
lessness, and general despair). Clearly, loss of
control, feeling burdensome to others, hopeless-
ness, and a desire to die begin to cross over from
the domain of conventional symptom distress
and into the realm of spiritual and existential suf-
fering.
SPIRITUAL CARE: INTERVENTIONS
FOR ALLEVIATING SUFFERING
A systematic search of the major medical, al-
lied health, social science, and humanities re-
search data bases yielded few rigorous evalua-
tions of spiritual interventions using randomized
controlled trial standards.* Similar to Cohen and
colleagues’ analysis published in 1997,
74
we
found largely descriptive studies and scholarly
discussions. Highlights of our review are sum-
marized below.
Spiritual care and who should provide it
Lunn
75
defines spiritual care in terms of “meet-
ing people where they are and assisting them in
connecting or reconnecting to things, practices,
ideas, and principles that are at their core of their
being—the breath of their life, making a connec-
tion between yourself and that person” (p. 154).
CHOCHINOV AND CANN
S-108
*Data bases included: Medline, CINAHL, Humanities,
and PsycINFO. Search terms included: religion, spiritu-
ality, faith, existentialism, hospice, palliative, or terminal
care, end of life, dying, death. We focused on interven-
tional studies, clinical trials or randomized clinical trials,
and literature reviews in English language publications.
A Swedish national survey of hospital chaplains
identified categories of questions posed to them
by patients with terminal illness. Five main cate-
gories were identified, in order of frequency in-
cluding: meaning; death and dying; pain and ill-
ness; relationships; and religious issues. Religious
issues accounted for only 8% of the questions
posed to chaplains. The authors conclude that
physicians and other professionals should be able
to address many of the questions posed to chap-
lains.
76
A study of nurses’ spiritual interventions
found that the majority used the following five
“therapies”: holding a patient’s hand, listening,
laughter, prayer, and being present with a pa-
tient. More than 90% of 299 respondents indi-
cated that they would offer, suggest, or provide
spiritual help in the following situations: when a
patient explicitly request spiritual support, is
about to die, is grieving, or receives bad news.
24
Walter
77
argues that spiritual care in palliative
settings may not be so much an opportunity as it
may be a burden for some caregivers. He sug-
gests that we drop the assumption that any health
care provider can provide spiritual care to any
patient and find ways instead of acknowledging
the differing spiritual or religious needs of indi-
vidual patients as well as what spiritual care each
team member can or cannot offer. On the other
hand, Derrickson
78
believes that, at the very least,
each member of the hospice team should be able
to recognize spiritual work when it is being done
and to listen respectfully to a patients’ individual
expressions of their spirituality.
General spiritual care approaches to
end-of-life care
Palliative care is an interventional approach
aimed at improving quality of life, enhancing
spiritual well-being, and reducing suffering. In a
study of 88 patients admitted to five palliative
care units across two distinct regions of Canada,
Cohen and colleagues used the McGill Quality of
Life (QOL) Questionnaire to document self-rated
QOL of patients on admission to the palliative
care unit and again 7–8 days later. The question-
naire was supplemented with semistructured in-
terviews. Significant improvements in quality-of-
life scores, including subscore improvements in
physical, psychological, and existential well-be-
ing, were demonstrated. This is one of the few
studies showing that palliative care can improve
existential well-being, in addition to psychologi-
cal and physical symptoms, among dying pa-
tients.
79
Similarly, Nelson and colleagues used
the Functional Assessment of Chronic Illness
Therapy Spiritual Well-Being Scales (FACIT-Sp)
to examine the impact of spirituality and reli-
giosity on depressive symptoms in a sample of
terminally ill cancer and AIDS patients. They ob-
served a negative association between meaning
and peace and depression scores, but no such as-
sociation for religiosity.
63
In summarizing the literature, Breitbart con-
cluded that there is clear evidence that traditional
group psychotherapy interventions for cancer pa-
tients are effective in improving quality of life and
reducing psychological distress, anxiety, and de-
pression, and in reducing physical symptoms,
both in populations of early-stage cancer patients
and in patients with advanced disease. These
therapeutic approaches largely fall within the cat-
egories of patient education or psycho-education
interventions; supportive–expressive interven-
tions; and cognitive–behavioral interventions. He
further notes that few cancer group psychother-
apy intervention trials have focused specifically
on existential or spiritual themes.
80
Chochinov and colleagues
81
reviewed various
psychotherapeutic approaches that have been
considered within the context of end-of-life care.
They note that supportive therapy has been the
mainstay of therapy for patients who are termi-
nally ill. The goal of supportive therapy is to bol-
ster adaptive coping mechanisms, minimize mal-
adaptive ones, and when possible, attenuate
anxiety and fear. Other interventions such as in-
sight-oriented therapy or interpersonal therapy
may have limited application for patients nearing
death, because of the longer time frames associ-
ated with these therapeutic approaches. Several
investigators have begun to explore intervention
strategies, largely targeting constructs such as
meaning and purpose or their antithesis–hope-
lessness, burden to others, loss of will to live, and
suffering.
Kearney and Mount
44
describe “surface-work”
and “depth-work” as psychotherapeutic re-
sponses to spiritual pain. Surface-work refers to
interventions aimed at alleviating distress at the
conscious or concrete level of the individual’s ex-
perience. Depth-work is an approach that moves
a person toward deeper levels of the psyche, help-
ing the individual to reconnect with simple and
ordinary aspects of life that, in the past, brought
that person a sense of significance. Examples of
ENHANCING SPIRITUAL ASPECTS OF DYING
S-109
depth-work interventions include art and music
therapy, image work, dream work, and certain
types of meditation.
Rousseau
2
offers practical guidance for treat-
ing spiritual suffering among dying patients. He
describes a framework that includes the follow-
ing: control of physical symptoms; providing a
supportive presence; encouraging life review to
help the patient recognize purpose, value, and
meaning; exploring guilt, remorse, forgiveness,
and reconciliation; facilitating religious expres-
sion; and focusing on meditative practices that
promote healing rather than cure.
Another treatment approach is based on the
construct of demoralization. Clarke and Kissane
advocate the adoption of demoralization syn-
drome as a relevant diagnostic entity in palliative
care.
82,83
Demoralization syndrome is defined as
“a psychiatric state in which hopelessness, help-
lessness, meaninglessness, and existential dis-
tress are the core phenomena” (p.13).
83
Their
treatment approach for Demoralization Syn-
drome consists of the following elements: provide
continuity of care and active symptom manage-
ment; explore attitudes toward hope and mean-
ing in life; balance support for grief with promo-
tion of hope; foster search for renewed purpose
and role in life; use cognitive therapy to reframe
negative beliefs; involve pastoral counseling for
spiritual support; promote supportive relation-
ships and use of volunteers; conduct family meet-
ings to enhance family functioning; and review
goals of care in multidisciplinary team meetings.
Future studies using this approach will answer
the questions of feasibility and efficacy in this pa-
tient population.
Specific spiritual care interventions
for end-of-life care
Acknowledging spiritual distress, in and of
itself, can be interventional. Providing such ac-
knowledgement requires being able to find lan-
guage that patients and physicians find com-
fortable and accessible, and the development of
assessment approaches that evaluate spiritual
well being. For example, Puchalski and Romer
50
recommend the mnemonic “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 spir-
itual or religious community? How should
these issues be addressed by the health care pro-
vider? MacInnis and colleagues have developed
a spiritual assessment tool to guide interdisci-
plinary palliative care team assessments of spir-
itual pain with strategies for alleviating suffer-
ing throughout the illness trajectory.
84
Whether
using formatted approaches or more open-
ended questioning, the goal is to demonstrate
openness to ongoing dialogue regarding spiri-
tual concerns, however broadly patients frame
or define them.
Some investigators
85,86
suggest that music and
art may contribute to spiritual healing, particu-
larly for those who are dying. The alternative mo-
dalities used in the service of spiritual care of the
dying include acupuncture, therapeutic touch,
biofeedback, relaxation, guided imagery, and
aromatherapy.
85
Evaluation of the therapeutic ef-
ficacy of these modalities is largely descriptive
and exploratory.
Cole and Pargament
87
describe a pilot psy-
chotherapy program that integrates spiritual is-
sues and resources for people diagnosed with
cancer. The program aims to address four con-
cerns including control, identity, relationships,
and meaning. In psychotherapeutic groups, par-
ticipants are encouraged to reflect on the four the-
matic spiritual issues and to draw on internal
spiritual resources that support adaptive coping.
The language used in the therapy sessions is
overtly religious. For example, therapists en-
courage participants to visualize God’s presence
and to view God as partner in their group ther-
apy work. A study is currently underway to as-
sess the efficacy of this program. An important
limitation of this approach may be its inaccessi-
bility to patients who do not believe in God, or
whose religion is not of the Judeo-Christian tra-
dition. It is also not clear whether the therapy
would be appropriate for persons in the late
stages of their illness.
Miller and colleagues have developed a sup-
portive–affective program that focuses on three
main areas: spirit, emotions, and relationships.
The program targets adults experiencing 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 at-
tention is devoted to the needs of African Amer-
ican patients and their caregivers. Participants
meet for monthly group discussions and are en-
CHOCHINOV AND CANN
S-110
couraged to raise issues related to spirituality,
emotions, and relationships. The program is also
designed to accommodate participants from di-
verse religious backgrounds and also for patients
who do not participate in an organized religion.
A randomized controlled trial demonstrated sig-
nificant 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 physicians.
88
Breitbart
80
and Breitbart and Heller
89
are ap-
plying the work of Viktor Frankl and his concepts
of meaning-based psychotherapy, to address
spiritual suffering amongst ambulatory patients
with advanced cancer. Their application of a
Meaning-Centered Group Psychotherapy aims to
help participants to sustain or enhance a sense of
meaning, peace, and purpose in their lives, and
to make the most of each group member’s re-
maining time. This approach uses a combination
of instruction, discussion, and experiential exer-
cises in eight group sessions, with each session
organized around a specific meaning-centered
theme. Because the therapists view the search for
meaning as a creative, individual, and active pro-
cess, patients are encouraged to be active partic-
ipants in the group process. Preliminary evalua-
tion points to favorable results. Before the
intervention, approximately 40% of study partic-
ipants did not report a sense of meaning or pur-
pose in their lives; after the intervention, none of
the participants perceived life as meaningless,
and at 2-month follow-up, beneficial treatment ef-
fects continued to mount. A version of this inter-
vention for individual use is currently being de-
veloped.
90
Chochinov and colleagues have developed an
empirically derived model of dignity towards the
end of life. This model is based on a qualitative
study of 50 dying patients and their perceptions
and concerns related to dignity.
56
Three major
categories emerged from the qualitative analysis:
illness-related issues that threaten to or actually
impinge on a patient’s sense of dignity; the reper-
toire of perspectives and practices that patients
use to conserve dignity; and an inventory of so-
cial interactions that either detract from or en-
hance one’s sense of dignity. The Dignity Model
provides caregivers a therapeutic framework in-
corporating a broad range of physical, psycho-
logical, social, and spiritual/existential issues
that may affect a person’s perception of dignity.
Based on their model of dignity, Chochinov
and colleagues have developed a therapeutic in-
tervention coined Dignity Therapy, targeting de-
pression and suffering, along with enhancing a
sense of meaning, purpose and will to live in pal-
liative care patients.
57, 91
Briefly, the Dignity Ther-
apy protocol poses questions that offer an op-
portunity for patients to address aspects of life
that they feel most proud of or that were most
meaningful; the personal history that they most
want remembered; or things that need to be said.
This allows the patient to address grief-related is-
sues, to offer comfort to soon-to-be bereft loved
ones, or to provide instructions to friends and
family. These sessions are tape recorded, tran-
scribed and edited, and then returned to the pa-
tient. This creates a tangible product, a legacy, or
generativity document, which in effect allows the
patient to leave behind something that will tran-
scend death. In contrast to other psychotherapies,
Dignity Therapy is brief, can be done at the bed-
side, and aims to affect both patients and their
loved ones.
Within a cohort of 100 terminally ill patients,
Chochinov and colleagues found that 91% re-
ported being satisfied with Dignity Therapy; 76%
reported a heightened sense of dignity; 68% an
increased sense of purpose; 67% a heightened
sense of meaning; 47% an increased will to live;
in addition, 81% reported that it had been or
would be of help to their family. Post-interven-
tion measures of suffering showed significant im-
provement (P 0.023), and reduced depressive
symptoms (P 0.05). Patients who felt that Dig-
nity Therapy helped their family reported feeling
that life was more meaningful (r 0.480; P
0.000), accompanied by a heightened sense of
purpose (r 0.562; P 0.000), will to live (r
0.387; P 0.000), and a lessened sense of suffer-
ing (r.327; P.001).
91
They concluded that Dig-
nity Therapy showed promise as a novel thera-
peutic intervention for suffering and distress at
the end of life.
One feature of interventions that target the bol-
stering of dignity, hope, and meaning is that they
may reduce existential or spiritual distress, with-
out an explicitly religious or faith-based focus.
Whether religiously framed, or more secular in
nature, there may be various useful approaches
to alleviating suffering. As Marrone stated, “In
the midst of dealing with profound loss in our
lives, the ability to re-ascribe meaning to a
changed world through spiritual transformation,
ENHANCING SPIRITUAL ASPECTS OF DYING
S-111
religious conversion, or existential change may be
more significant than the specific content by
which that need is filled” (p. 495).
92
RECOMMENDATIONS
FOR FUTURE RESEARCH
The intangible nature of spiritual and existen-
tial issues related to dying raises the question of
whether any amount of research will enable us to
unravel fully this aspect of terminal care. Never-
theless, it is important to try to understand, as
best we can, all facets of suffering toward the end
of life, and to determine what actions may best
provide necessary comfort. To that end, holistic
clinicians should be mindful of these issues, and
researchers will need to follow a deliberate and
systematic path within the realm of spiritual and
existential enquiry.
Who should be doing spiritually
focused research?
Research addressing the topic of spirituality
is being undertaken within various health dis-
ciplines, including medicine,
10
nursing,
24,47
so-
cial work,
25
occupational therapy,
43
and chap-
laincy.
84,93
For the most part, researchers tend
to work within their disciplinary silos, publish-
ing in their discipline-specific journals. Most of
the English publications have been produced in
the United States; hence, they tend to reflect
American attitudes and practices. Research in-
terest also exists in the United Kingdom,
19
Canada,
58–61,79,94
Australia,
83
Sweden,
66,76
Nor-
way,
16
and Taiwan.
47
Future research needs to
engage expertise across a broad spectrum of
perspectives, integrating the insights and profi-
ciencies that each of these vantage points has to
offer. To the extent that religiosity and spiritu-
ality are culturally or ethnically bound, research
of this nature needs to take place across a broad
range of international constituencies.
What should spiritual research be addressing?
There are many pressing questions that need
to be addressed within the context of spiritual is-
sues and end-of-life care. Framing these issues
from a secular perspective, constructs such as
spiritual well-being, transcendence, hope, mean-
ing, dignity, and demoralization have begun to
appear in the literature.
83
Efforts to measure and
track these constructs, to understand more fully
the spiritual needs of the dying, and to correlate
them with variables and outcomes such as qual-
ity of life, pain control, coping with loss, and ac-
ceptance are warranted.
13
Framing these issues
from a religious or faith-based perspective, fur-
ther research is needed to examine various di-
mensions of a person’s religious life and how
these correlate with similar outcomes. Multicen-
ter studies to ensure generalizability are neces-
sary,
74
with longitudinal studies needed to assess
patients’ changing experiences and needs over
time.
58,74
What are the methodological issues in
spirituality research?
Cohen and colleagues
74
assert that a lack of ap-
propriate or robust outcome measures, especially
those tracking existential and spiritual issues,
have proved a barrier to the scientific evaluation
of palliative care interventions and programs.
Qualitative research may provide an important
methodological approach in that it enables the as-
sessment of subjective experience of illness em-
bedded within its historical, cultural, social, and
spiritual contexts.
58,94
Although quantitative ap-
proaches may suit particular protocols, qualita-
tive methods may provide a greater understand-
ing of spirituality and religiosity and enable the
subjective reporting of experiences for which ro-
bust measures are only starting to emerge.
63,74
What are the interventional challenges?
A number of interventional opportunities to
enhance spiritual well being are now being in-
vestigated. Some, such as Dignity Therapy and
Meaning-Centered Group Psychotherapy have
shown initial promise, and are currently under-
going more rigorous testing using a randomized
control trial design. Other conceptual approaches
that provide frameworks or clinical guidelines for
the provision of spiritual care need to be formally
tested to answer the questions of feasibility and
efficacy. The role of chaplains in spiritual care,
and how they can best identify and meet the
needs of their clientele, merits further investiga-
tion. Moreover, the way that we use language to
broach spiritual aspects of care needs to be eval-
uated, to ensure that patients are approached in
a fashion that is comfortable and accessible, no
matter what their individual religious or secular
orientation.
CHOCHINOV AND CANN
S-112
CONCLUSION
Palliative care is often described in terms of a
holistic approach. This notion of holism or “total
care” “turns on the insight that the physical, the
psychological and the spiritual are but distinctive
perspectives upon what is, in reality, a unity”(p.
952).
49
Honoring this “unity,” or whole-person
care, requires a heightened sensitivity to the spir-
itual aspects of end-of-life care. Research ad-
dressing these dimensions of personhood offers
a unique opportunity to expand the horizons of
contemporary palliative care, thereby decreasing
suffering and enhancing the quality of time re-
maining to those who are nearing death.
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Address reprint requests to:
Harvey Max Chochinov, M.D., Ph.D., F.R.C.P.C.
Rm 3017–675 McDermot Avenue
Winnipeg, Manitoba, Canada
R3E 0V9
Phone: (204) 787-4933
Fax: (204) 787-4937
E-mail: harvey.chochinov@cancercare.mb.ca
ENHANCING SPIRITUAL ASPECTS OF DYING
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