JOURNAL OF PALLIATIVE MEDICINE

Volume 9, Number 2, 2006 Palliative Care Reviews

© Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2006.9.464

A Thematic Review of the Spirituality Literature

within Palliative Care

SHANE SINCLAIR, B.A., M.Div., Ph.D.(c),1 JOSE PEREIRA, M.B.Ch.B., D.A., C.C.F.P.,2
and SHELLEY RAFFIN, R.N., B.Sc.N., M.N., Ph.D.3

ABSTRACT

Research related to spirituality and health has developed from relative obscurity to a thriv-
ing field of study over the last 20 years both within palliative care and within health care in
general. This paper provides a descriptive review of the literature related to spirituality and
health, with a special focus on spirituality within palliative and end-of-life care. CINAHL
and MEDLINE were searched under the keywords “spirituality” and “palliative.” The review
revealed five overarching themes in the general spirituality and health literature: (1) concep-
tual difficulties related to the term spirituality and proposed solutions; (2) the relationship
between spirituality and religion; (3) the effects of spirituality on health; (4) the subjects en-
rolled in spirituality-related research; and (5) the provision of spiritual care. While the spiri-
tuality literature within palliative care shared these overarching characteristics of the broader
spirituality and health literature, six specific thematic areas transpired: (1) general discussions
of spirituality in palliative care; (2) the spiritual needs of palliative care patients; (3) the na-
ture of hope in palliative care; (4) tools and therapies related to spirituality; (5) effects of re-
ligion in palliative care; and (6) spirituality and palliative care professionals. The literature
as it relates to these themes is summarized in this review. Spirituality is emerging largely as
a concept void of religion, an instrument to be utilized in improving or maintaining health
and quality of life, and focussed predominantly on the “self” largely in the form of the pa-
tient. While representing an important beginning, the authors suggest that a more integral
approach needs to be developed that elicits the experiential nature of spirituality that is shared
by patients, family members, and health care professionals alike.

INTRODUCTION in their respected disciplines. However, most of

this literature is theoretical and opinion based, fo-
The epiphany of spirituality and health research cusing on the conceptualization of a term that
seems to escape attempts to confine it to a sim-
ple standard definition.1(p31) This conceptual is-
T HE TOPIC OF SPIRITUALITY, in relation to health
research, is one that has seen extensive schol-
arly interest over the last 20 years as is evident in
sue was a factor in this paper because the writ-
ers had to decide which terms to include in their
the approximate 5000 citations when the word is literature search on spirituality. For example,
entered into CINAHL or MEDLINE (Table 1), ar- should the literature review be broadened to in-
guably the most recognized literature search tools clude terms such as “well-being,” “meaning,”
1Foothills Medical Centre, Calgary, University of Calgary, Calgary, Canada.
2Palliative Medicine, Universities of Lausanne and Geneva, Switzerland and Department of Oncology, University
of Calgary, Calgary, Canada.
3Faculty of Nursing, University of Calgary, Calgary, Canada.

464
SPIRITUALITY LITERATURE REVIEW 465

TABLE 1. LITERATURE SEARCH: TERM: from the domains of theology and religious stud-
‘SPIRITUAL$’(TRUNCATED) (AS OF MAY 25, 2005) ies will be incorporated as appropriate.
MEDLINE CINAHL ALTA

1960–1969 24 n/aa 699 LITERATURE REVIEW METHODOLOGY

1970–1979 178 1a 2337
1980–1989 517 350a 3901 AND SEARCH STRATEGY
1990–1999 1645 2260 3985
2000–2005 2271 2787 1254 Although the literature review was largely de-
Total 4635 5401 13,126 scriptive, with the aim of identifying emerging
aCINAHL tracks articles from 1982 to the present. The themes in the literature, a systematic approach
researchers are therefore unsure why CINAHL produced was taken to identify the relevant literature. Two
1 result pre-1982. reference databases, MEDLINE (1966 to April
2005) and CINAHL (1982 to April 2005) under the
keywords “spirituality” and “palliative.”
“hope,” “religion,” “suffering,” and “belief,” All papers were individually assessed for rel-
which while maybe not being intended to be cor- evance and quality by the principal author’s doc-
related to spirituality by the original authors, ar- toral committee, representing a range of profes-
guably fall under the umbrella of spirituality? sional and interdisciplinary perspectives. The
Furthermore, the increasing interest in spiritu- total number of articles identified by this elec-
ality within health care and the emerging re- tronic online search was 101 (MEDLINE) and 135
search appears to be following several themes, al- (CINAHL). Many mentioned the term spiritual-
though these have not been well articulated. One ity in passing. After sifting through these articles,
such theme appears to relate to researching the gathering other articles that mentioned an aspect
therapeutic use of spirituality and the effects of of spirituality but not the term itself (e.g., hope,
spirituality on health outcomes. Palliative care meaning); conducting manual searches in bibli-
and end-of-life care seems to be driving much of ographies or referred by peers that were not lo-
this recent interest as it views the need to address cated in the original literature search, 58 articles
the spiritual needs of terminally ill patients as one were deemed pertinent and discussed here in the
of the cornerstones of palliative care’s mandate thematic analysis.
(Table 2).2 This review attempts to systematize Six themes emerged within the palliative care
the spirituality and health literature within pal- literature: (1) general discussions of spirituality
liative care in order to provide a thematic frame- in palliative care14; (2) spiritual needs of pallia-
work that will identify the historical trends in the tive care patients23; (3) the nature of hope in pal-
literature and in doing so, reveal current gaps liative care7; (4) tools and therapies related to
which will guide future research. The literature spirituality6; (5) effects of religion in palliative
reflects an understanding of spirituality that is care3; and (6) spirituality and palliative care pro-
void of religion, an instrument to be utilized in fessionals.5 Themes were determined by the prin-
improving or maintaining health and quality of cipal author and his doctoral committee repre-
life, and is primarily focused on spirituality as it senting a variety of disciplines, three of whom are
relates to the individual, namely the patient. experts in the field of palliative care. It should be
While these thematic threads have proven neces- noted that while these groupings were necessary,
sary and beneficial, they provide a finite and there were articles that overlapped and covered
somewhat skewed understanding of spirituality more than one of these themes. Additional elec-
that is in need of expansion. While this review fo- tronic online searches on a variety of terms re-
cuses on the spirituality literature within pallia-
tive care specifically, it begins with a discussion
of spirituality and health research in general TABLE 2. LITERATURE SEARCH: TERMS: ‘SPIRITUAL$’
(Table 1). This review will first identify, articulate (TRUNCATED) AND (SEE BELOW) (AS OF MAY 25, 2005)
and critique the emerging themes related to the Additional term MEDLINE
general spirituality and health literature in order
to provide a framework from which a more de- Palliative 284
tailed and informed discussion of the topic within Terminal 558
Hospice 254
palliative care specifically can ensue. Literature
466
lated to spirituality and health literature (Tables
1–4) were also used for historical purposes but
not reviewed.
THE LARGER CONTEXT: A THEMATIC
REVIEW OF THE WIDER SPIRITUALITY
AND HEALTH LITERATURE
One of the initial points of discussion does not
come from within the literature itself but from the
sudden interest in the topic of spirituality within
health care. While there was some interest in the
topic of spirituality prior to 1990 within health-
care (see Table 1), the last fifteen years has wit-
nessed a prolific increase of activity in the topic.
One is compelled to ask the question—what is
driving this surge in interest? What factors con-
tribute to the centrality of the topic over the last
20 years within healthcare in contrast to its vir-
tual absence prior to this period? Perhaps, such
statistics simply parallel the evolution of qualita-
tive research methods in these disciplines, pro-
viding researchers in the field with improved and
more appropriate tools to empirically explore this
rather ethereal topic, this was not however re-
flected in the literature.3 Perhaps, it is evident of
an effort to reintegrate, not only spirituality and
health,4,5(p554),6 but the sacred and the secular.7,8
Some scholars suggest that the interest in spiri-
tuality was due to an evolution from what prior
to 1970 was commonly termed “religious care” to
the more encompassing term spiritual care9(p5);
this however was not reflected in the literature
(see Table 4). What can be acknowledged with
some degree of certainty is that spirituality based
research, and spirituality in general, has become
a very fashionable concept in Western society of
late, contributing to a variety of different mean-
ings.10–15 A detailed reflection on what is driving
the increase in spirituality-related literature and
TABLE 3. LITERATURE SEARCH: TERMS: ‘NURSING’ AND
‘SPRITUAL$’ (TRUNCATED) (AS OF MAY 25, 2005)
MEDLINE CINAHL
1980–1989 0 100a
1990–1999 4 507a
2000–2005 194 514a
Total 198 1121a
aCINAHL tracks articles from 1982 to the present.
SINCLAIR ET AL.
TABLE 4. LITERATURE SEARCH: TERM: ‘RELIGIO$’
(TRUNCATED) (AS OF MAY 25, 2005)
MEDLINE
1960–1969 1151
1970–1979 3992
1980–1989 4730
1990–1999 8912
2000–2005 5928
interest in general is outside the scope of this pa-
per.
Proposed solutions to the conceptual ambiguity of
the term spirituality
The conceptual ambiguity of the term spiritu-
ality, while being filled with differences, is per-
haps the single greatest point of unity in the lit-
erature, as researchers seemed to devote most of
their discussion to the lack of a conceptual defi-
nition. Three possible approaches to defining the
term spirituality seem to be emerging: (1) recog-
nition that the concept does seem to evade lan-
guage and should therefore be treated contextu-
ally; (2) a broad definition of spirituality being
proposed that is somewhat ambiguous; and (3) a
concise definition being proposed that is restric-
tive. Proponents of the first option, such as
White,13 Cawley,1 Oldnall,14 Narayanasamy,15
echo the words of Byrne when she writes, “The
concept of spirituality does, however, appear to
be resistant to language.”16(p67) Researchers, who
situate themselves in this camp, inevitably sug-
gest studying spirituality from a more qualitative
perspective, arguing that because spirituality is
to be experienced it cannot be measured. The
words of McGrath embody the central thrust of
this perspective, “conceptually, spirituality can-
not be understood as an independent entity to be
measured and recorded. Researchers need to be
open to the plethora of ways that individuals con-
struct meaning. . . .”17(p183)
A second response is to acknowledge the sub-
jective nature of spirituality, but unlike advocates
of the first position, to provide a broad definition
that focuses on commonalities. Definitions range
from broad summary statements such Ross’s def-
inition within nursing, “[The spiritual dimension]
has been regarded as the central artery which per-
meates, energises and enlivens the other dimen-
sions of humankind”18(p37) to the listing of a
SPIRITUALITY LITERATURE REVIEW
number of central themes that are presented as
individual tenets.19,20 One such example is Em-
blen’s listing of eight key concepts of spirituality
after reviewing thirty years of nursing literature:
(1) personal, (2) life, (3) principle, (4) animator,
(5) being (God), (6) quality, (7) relationship, (8)
transcendent.21 A central term that is used by re-
searchers within this viewpoint is the term
“meaning,”22–27 which is a particular feature of
the palliative care literature on the topic as will
be discussed further below.28–34
The final position seems to be indicative of two
types of researchers: quantitative researchers and
researchers who seem to have a strong personal
faith. The former are influenced by the pressures
to identify an operational definition that can then
be quantified.17(p182) Most of the spirituality and
health studies reviewed by Larson et al.35 emu-
lated this position. Other examples include stud-
ies on the effects of prayer on cardiac patients and
the effects of prayer on in vitro fertilization.36,37
The latter group of researchers substitute strong
beliefs for statistics and therefore either attempt
to include the broader view of participants into
their more restrictive definitions or they exclude
participants’ views on spirituality altogether.14
The relationship between spirituality and religion
A second feature of the health care literature
on spirituality is discussion of the relationship be-
tween spirituality and religion. It is generally
agreed upon within this literature that the term
“religion” is correlated to an organized faith sys-
tem, beliefs, worship, religious rituals, and rela-
tionship with a divine being.5,35,38–41 Emblen,21
for example in her literature search, sought to dis-
tinguish between the term spirituality and reli-
gion in the nursing literature, and concluded that
religion is only one of many forms of spiritual
expression. Markham,42 however notes that the
term spirituality itself is closely associated with
the Christian religion and is at the very least ex-
pressed differently in other religions.
While most researchers would agree that spir-
ituality and religion are not synonymous terms,
an essential issue in the literature is the nature of
this relationship. While most researchers view the
relationship as amicable, some researchers seem
to reflect a desire to rescue spirituality from the
confines of religion, whether that be in the form
of a religious institution or a field within acade-
mia.9,43 Kearney and Mount,49(p359) in this vein
467
state, “Religion, on the other hand is a construct
of human making that, for some, enables con-
ceptualization and expression of spirituality.”
Walter,44(p135) concluded his survey of this issue
in palliative care, by stating that the majority of
researchers in palliative care attempt to separate
spirituality from religion, seeing “religion as cod-
ified, institutionalized and relatively narrow ex-
pression of spirituality.” While these writers
would agree, that spirituality transcends and in-
cludes religion45,46 and therefore assumes that all
people are spiritual,17(p182) caution does need to
be exercised in distinguishing these concepts
from one another.10 This tendency is further evi-
dent in the title of book chapters such as “From
Religion to Spirituality”9 and terms such as “hu-
man construct” and “restrictive,” which connote
a history of progress. The reason for concern is
threefold; first, these views generally reflect a hu-
manist perspective,47 which while reflecting an
unsecterian approach, would likely not coincide
with the adherer’s of religions who would reject
labels such as “human construct” and the notion
of moving from religion to spirituality.48 Second,
they reflect a Hegelian view of history, which
places contemporary thought in a preferential po-
sition in relation to the history of the wisdom tra-
ditions. Finally, as Marty12 suggests spirituality
itself moves towards organization, developing
from a nebulous movement into an organized
and structured body of beliefs.
The field of religious studies provides us with
some interesting feedback in regards to the rela-
tionship between spirituality and religion. Schol-
ars have commented that the contemporary us-
age of the term “spirituality” is “misty, evanescent,
wispy and rich in appeal to narcissism”12(p439) and
a term that everyone uses but nobody under-
stands.49 Regarding the apparent dichotomy
between these two illusive terms, while some
scholars have supported this divide,50 there is
increased evidence that these two concepts while
being distinct are very much interdependent
terms,10 as reflected in the writer’s previous re-
search within an interdisciplinary palliative care
team.51 Marler and Hadaway10 reviewed studies
by Roof,52 a U.S. national 1999 Gallup poll,53 a
“Spirituality and Health” poll conducted in 2000
by Scott,54 and the Zinnbauer et al.11 study of re-
ligious definitions. They discovered that many of
the respondents to each of these studies saw
themselves not in an either or fashion in relation
to spirituality and religion, but in a both and man-
468
ner—being both religious and spiritual. Marler
and Hadaway10 therefore stress the importance
of offering respondents of such surveys the choice
of being both religious and spiritual as they dis-
covered that a significant portion of respondents
from each of these major studies saw themselves
in this manner.
The effects of spirituality on health
A third theme of the health care research on
spirituality is a focus on the effects of spirituality
on various health outcomes. Studies have re-
ported that spirituality and related aspects (e.g.,
prayer, meditation) have had a positive effect on:
chronic pain55–57; psoriasis in patients receiving
phototherapy58; patients’ immune function59; less
adverse affects in cardiac patients36; the success
of in vitro fertilization37; greater social support
and fewer depressive symptoms among geriatric
patients;38 bereavement60–62; increased physical
and mental health63–65; and various quality-of-life
issues in palliative care that will be discussed in
greater detail below.66–68 Larson’s seminal sys-
tematic review of over 300 spirituality and health
studies35,69 in which the correlation between spir-
ituality, religion and health is argued, provides a
comprehensive review of such research and epit-
omizes this functionalist approach.11
Criticism of these findings are extensive and
discussed comprehensively by Sloan et al.6 and
Freedman et al.70 The central weakness is the fail-
ure to control for confounding variables, such as
socioeconomic status, behavioural differences,
age, physical mobility and social support.6(p665)
For example, Larson and colleagues71,72 cite nu-
merous studies that indicate a positive correla-
tion between church attendance and life ex-
pectancy, and between church attendance and a
decreased rate of suicide.73 But as Sloan et al.6 and
Freedman et al.70 note, many confounding factors
were not accounted for; including the observation
that people who attend church are generally
healthy enough to attend versus people who are
too sick to attend. A second criticism of studies
on the effects of spirituality on health relate to
sampling. Freedman et al.,70 analyzed all 329
peer-reviewed research studies cited by Larson35
and discovered that the studies largely reflected
the experiences of Caucasian (85% of the studies),
American (73% of studies), Christian subjects
(95% of respondents when mentioned) and can-
not therefore be generalized.70(p92) While the
SINCLAIR ET AL.
above mentioned studies seem more indicative of
the relationship of religion and health, similar
correlations have been made between spirituality
and health. For example, Chiu et al.74 in their sur-
vey of the spirituality literature in health care re-
ported that 79.5% of the articles originated in the
United States, with only 2.4% of articles originat-
ing from non-Western countries.
One final note that has not received much at-
tention in the literature is the general utilitarian
approach that underlies a lot of these studies ex-
ploring the effects of spirituality on health.8,48,69
This consumeristic approach to spirituality often
runs contra to the heart of the historical traditions
that developed such practices, creating what
could be termed a “spiritualistic” approach to
spirituality. One recent text has begun to discuss
this apparent contradiction within the Christian
tradition,48 arguing that while healing has always
been a significant concern of Christianity, this in-
terest occupies a limited place within the tradi-
tions’ overarching concern for its members to
faithfully participate in the entire scope of God’s
work toward all creation.48(p7)
The subjects of spirituality and health research
A fourth theme of the spirituality and health
research literature are the subjects of study—the
patients themselves. While the research reflected
a broad understanding of spirituality, ranging
from self awareness to the relationship of self to
“Other,” research was confined primarily to the
relations of such concepts to the patient and did
not address the role of spirituality in the lives of
family members and health care professionals.
For example, while health care professionals are
called to care not only for patients, but their fam-
ilies,2 the authors were hard pressed to find a
journal article that studied the spiritual needs of
patients’ families. Within palliative care, Mc-
Grath,17 in her extensive discussion of the litera-
ture did not cite one study that dealt with this
topic. Murray et al.75 represented the only study
that included carers in their study population, re-
porting that carers expressed unmet spiritual
needs. If one considers including the bereave-
ment literature in their search, there would be an
expected increase in articles, but the idea that
spiritual needs are only a reality post-mortem is
a troubling understanding of health and is in
stark contrast to this palliative care chaplain’s
clinical experience. Inferences to the importance
SPIRITUALITY LITERATURE REVIEW
of addressing the spiritual needs of family mem-
bers can be taken from Cherlin et al.76 study on
family perceptions of clinicians’ outstanding
practices in end-of life care, which included non-
abandonment, respect, and care for the family.
The tendency to focus on the ill patient further
perpetuates the notion of spirituality as simply
another treatment method to be utilized for a pos-
itive health outcome. As Shuman and Meador
note:
Religion and medicine are, in contemporary
North American culture, means of achiev-
ing desirable goods external to their prac-
tice; both are increasingly viewed as means
for self-interested individuals to attain the
nearly universally desirable commodity that
is individual health.48(p6)
There was also a lack of research on the spiri-
tuality of caregivers themselves. It seems some-
what ironic that we, as caregivers, recognize the
importance of holistic care for our patients (spir-
itual, psychological, social and physical), yet we
do not see the importance in living out this phi-
losophy personally as is evident in the lack of re-
search on the topic. A very small number of stud-
ies,13,77–80 including the researchers’ own study,51
provided direct research into this area, along with
a handful of other studies that referred to the re-
lationship between spirituality and health care
professionals indirectly.81–87
The provision of spiritual care
A final characteristic of the literature related to
the provision of spiritual care, within the scopes
of practice of various disciplines. This is sup-
ported in the literature as patients have identified
a desire to have their spiritual needs addressed
by various health professionals.5,24,88–94 Profes-
sionals in a variety of disciplines have made the
case of the inclusion of spiritual care within the
scope of their practice.18,20,82 The discipline of
psychiatry, for example, provides both direct dis-
courses on the inclusion of spiritual care into their
discipline,95–97 along with others who seem to
simply assume the place of addressing aspects of
spirituality within psychiatry without feeling the
need to provide justification.98,99
While most authors advocate for spiritual care
to be included in the scope of practice of their var-
469
ious disciplines, what this care actually looks like
in the various disciplines, particularly the non-
chaplaincy related ones, is unclear.79,100,101 It is
not surprising that some concerns about role
overlap have been expressed. Kelleher suggests
that there appears to be “a race to add spiritual
care to the ambitions of certain clinical profes-
sions.”102(p175) This may reflect the same tensions
that occur within interprofessional collaboration
and multidisciplinary care.103 The authors of this
review argue that chaplaincy should not own the
sole rights to providing this care but, apart from
providing spiritual care for those patients with
significant spiritual needs, have an important role
to educate, guide and equip other disciplines
with the skill sets to engage in this care. An in-
teresting secondary feature of the discourse of
specific disciplines regarding spirituality is the
language they use. For example discussions of
spirituality in the nursing literature predomi-
nantly speak of the spiritual “dimension,”18,104–108
which seems to reflect an underlying compart-
mentalization of the human make up, whereas
psychiatry, as will be discussed below, frequently
uses the terms “meaning” and “therapy” in their
discussions.28,66,98,109,110 This demonstrates how
discussions about spirituality are affected by the
discourse of the particular discipline that one is
coming from.
SPIRITUALITY IN THE CONTEXT OF
PALLIATIVE CARE
The palliative care literature has provided a
significant amount of articles on spirituality. A
systematic review of spirituality and religion in
three palliative care journals between 1990–1999,
resulted in 155 articles being found, most of
which were in the form of nonresearch-based dis-
cussions that indirectly mentioned the topic.111
The present literature search began by utilizing
CINAHL and MEDLINE under the keywords
“palliative” and “spirituality” resulting in just
over 100 articles being found, many of which only
mentioned the term spirituality in passing. After
sifting through these articles, gathering other ar-
ticles that mentioned an aspect of spirituality but
not the term itself (e.g., hope, meaning); and any
other articles discovered in bibliographies or re-
ferred by peers that were not located in the orig-
inal literature search but were deemed pertinent,
470
58 articles were found. After reviewing the liter-
ature six themes emerged: (1) general discussions
of spirituality in palliative care14; (2) spiritual
needs of palliative care patients23; (3) the nature
of hope in palliative care7; (4) tools and therapies
related to spirituality6; (5) effects of religion in
palliative care3; and (6) spirituality and palliative
care professionals.5 A summary of the literature
is provided within these six themes.
General discussions of spirituality and
palliative care
The general articles14 on spirituality and pal-
liative care reflected three themes—historical
background, the necessity of spiritual care, and
discussion on definitions and distinctions be-
tween religion and spirituality. The person of
Dame Cicely Saunders, the founder of the mod-
ern palliative care/hospice movement, was a cen-
tral figure in the original discourses on spiritual-
ity.112–114 Saunders, who originally came from an
evangelical background, viewed hospice as a
spiritual movement and a “revolt against the dis-
regard of the patient as a person” evident in West-
ern medicine in the 1960s.114 O’Connor and
Kaplan write:
For Dame Cicely, spiritual care was not an
‘optional extra’. So crucial was the integra-
tion of spiritual care into hospice work that
she suggested that one method of evaluat-
ing the hospice experience in America
would be to measure the level of the spiri-
tual dimension being practiced in the deliv-
ery of terminal care.115(p53)
Walter116 discussed the Christian roots of the
hospice/palliative care movement and the im-
portance of broadening the spiritual horizons,
identifying three approaches to spiritual care that
contemporary palliative care has taken: (1) reli-
gious; (2) ecclesiastical; and (3) spiritual. Wal-
ter116 notes that the spiritual/meaning approach
represents a growing trend and is a highly
individualized perspective. Zimmermann and
Rodin,117 while not focussing on the history of
palliative care specifically, provide interesting in-
sight into the historical period in which these in-
stitutions developed.117 According to them, the
hospice movement was birthed under “the denial
of death thesis,” a term sociologists used for the
period between 1955–1985 in which the medical,
SINCLAIR ET AL.
psychological, and social science literature per-
petuated the notion that Western society was a
death-denying culture.
The other two categories in this grouping—the
necessity of spiritual care and discussion on
definitions and distinctions between religion
and spirituality—paralleled the spirituality and
health literature in general, focusing on the con-
cept of spirituality and its importance to the field
of palliative care. While the lack of conceptual
consensus was an identified challenge in the pal-
liative care literature,118 half of the articles de-
fined spirituality from what could be described
as a humanist perspective focussing on the term
“meaning” that in turn differentiated “spiritual-
ity” from “religion.” In focusing on “meaning,”
this also resulted in spirituality being defined
very individualistically, with minimal mention of
“other.”8,16,23,30,44,99,109,113,114,119–123
The spiritual needs of palliative care patients
The majority of palliative care articles on the
topic focussed on the spiritual needs of palliative
care patients, three of which were overviews in
the form of book chapters in major palliative care
texts.43,124,125 Surprisingly, only three studies
asked patients directly to report on their spiritual
needs,75,110,126 however, one of these studies fo-
cused on a cancer population and not palliative
care patients specifically. One book127 sought to
discover what palliative patients wanted, reveal-
ing many spiritual needs even though spiritual-
ity was not the specific focus of the text. Murray
et al.75 reported the need for love, meaning, pur-
pose, and transcendence, while the Moadel et
al.110 study of 248 patients with cancer reported
the need to overcome fears (51%); hope (42%);
meaning in life (40%); finding spiritual resources
(39%); and someone to talk to about: finding
peace (43%); meaning of life (28%), death and dy-
ing (25%). Steinhauser et al.126 identified eight
items that were important factors in the dying
process as identified by patients, bereaved fam-
ily members, physicians and other care providers.
While not specifically aimed at spiritual needs,
some of these more general needs could be con-
sidered spiritual needs, such as: being mentally
aware, making funeral arrangements, not being a
burden, helping others, and coming to peace with
God.
Other articles reflected the opinion of health care
professionals in regards to whether spiritual needs
SPIRITUALITY LITERATURE REVIEW
were being met128–130 the importance of maintain-
ing meaning, control and/or dignity28,43,67,131; ad-
dressing suffering/spiritual pain33,43,112,124,125,129,132;
reconciliation124,130; listening, belonging and pres-
ence43,85,93,127,129,130,133–135; patient’s concern about
the future for self and family124,133; and effects of re-
ligion on issues of psychosocial distress and re-
quests for hastened death.68,136 Additional themes
that did not fit into any of the above categories in-
cluded self-realization27 and transcendence.28,127
There were also three research studies that
touched upon the spiritual needs of patients, that
are here mentioned. Albaugh137 utilized phenom-
enology and studied spirituality in individuals
(n  7) with a life-threatening illness, reporting
that spirituality greatly affected patient’s sense of
meaning. Another study of 160 terminally ill pa-
tients identified spiritual well-being as the great-
est factor in protecting against end-of-life de-
spair.29 Finally, Chochinov et al.,138 found that
depression, anxiety, shortness of breath, and a
sense of well-being were the main predictor vari-
ables of will to live in 585 palliative care patients.
In addition to the need to alleviate spiritual
pain and issues of meaning, “presence” or “be-
ing with” patients in their suffering seemed to be
a primary need according to patients themselves
and as perceived by their health care providers.139
When one considers the involvement of a health
care professional in addressing spiritual pain and
meaning, the centrality of palliative care profes-
sionals in providing spiritual healing seems to be
all the more apparent. While these studies, were
predominantly nonresearch-based discussions,
focusing on many of the common themes of spir-
ituality and health research in general (as noted
above), there were also some differences. These
included less of a focus on the affects of spiritu-
ality on physical health and more of a focus on
maintaining aspects of spirituality, such as qual-
ity of life/well-being, rather than improving
them.
The nature of hope in palliative care
Hope and spirituality was frequently cross-ref-
erenced within the literature reviewed and for
that reason was included in this review. Articles
in which the cross-referencing was the main
theme of the article, were included in the review,
resulting in seven articles in the form of two re-
search studies and five discussion papers. One re-
search study,140 involved factor analysis being
471
conducted on two datasets in patients with ac-
quired immune deficiency syndrome (AIDS) in
which the Beck Hopelessness Scale was used, re-
vealing a superiority for a three-factor approach
(two factor  lack of motivation/control [factor
2]) versus a two-factor (optimism [factor 1] and
pessimism [factor 3]) model. Correlational analy-
sis revealed that measures of depression, spiri-
tual well-being and suicidal ideation were the
strongest correlates of all three factors. Finally,
the authors noted that this three-factor preference
may have some interesting clinical implications,
including the possibility of helping patients
maintain an optimistic view of the future (factor
1), despite experiencing a lack of control in ones
life (factor 2), which palliative patients invariably
are forced to deal with. Interestingly the highest
correlate to suicidal ideation was not a lack of
control (factor 2) as the authors expected, but a
pessimistic view of the future (factor 3). One lim-
itation of this study is that it did not measure
hopelessness over time, an important issue when
reporting on emotional factors in palliative pop-
ulations as there are substantial temporal fluctu-
ations.138,141 Second, as is true of many studies of
this nature, the study captured the content of
hopelessness but did not provide insight regard-
ing the mechanism of hopelessness. Buckley and
Hearth142 sought to understand the meaning of
hope, to identify strategies patients use in main-
taining hope and to track changes in hope over
the dying trajectory by administering a Herth
Hope Index (HHI) and a semistructured inter-
view. The convenience sample, in which 15 of the
16 participants believed that their spirituality fos-
tered hope, raised questions about the construct
validity of the study and whether in fact it was
about “fostering” hope or perhaps “tapping” into
preexisting hope. The authors reported that the
meaning of hope was associated with love for
family and friends and that strategies for main-
taining hope included being goal-focused and
“scaling-down” hope over time.
Additional articles discussed the nature of
hope,143 noting that hope in palliative care is mul-
tidimensional (not a unidimensional hope for a
cure), underresearched, and of therapeutic value.
A similar article101 also studied the nature of hope
in palliative care noting that in this context hope
should be viewed more as a process rather than
a state to be obtained. Hegarty notes the impor-
tance of the health professional in this process,
particularly in the way information is given, the
472
time and space allowed for exploration and the
assurance of continuing support.101(p42) Hegarty,
similar to Buckley and Hearth,142 also noted the
strong connection between hope and a person’s
belief system. One article144 spoke of hope in the
context of amyotrophic lateral sclerosis (ALS),
drawing on the authors personal experience as an
occupational therapist working with ALS pa-
tients and as a daughter of an ALS patient. This
article, unlike previous articles, notes that in or-
der for hope to occur one often goes through a
process of hopelessness and denial. She suggests
that in doing so ALS patients arrive at a far deeper
understanding of hope, “This is not hope for sur-
vival, but for something richer and more mean-
ingful—a peaceful acceptance of life, and its in-
explicable beginnings and endings.”144(p260) It is
interesting, that in comparison with the discus-
sions of palliative care professionals’ reflections
on hope, this personal account provides, what
may very well be a more holistic understanding
of hope and all of its suffixes (i.e., “fullness” and
“lessness”). This is clinically congruent with the
principal author’s work as a chaplain, which in-
cludes the provision of spiritual care to ALS pa-
tients who often go through despair and find a
greater sense of hope as a result. While hope is
important, as noted above, this seems to suggest
that it should not be rushed to too quickly, as this
may circumvent the despair that often needs to
be wrestled with before hope in its fullness can
be experienced.
One article noted that, “Spirituality instils hope
that extends beyond the grave.”145(p1001) The final
article, an editorial,146 critiqued the literature on
hope, identifying two interrelated problems:
hope is not adequately defined conceptually and
there is a recurring tendency to mistake hope’s
content (faith, meaning, etc.) for the mechanism
of hope, noting that “each could just as well be a
final outcome of other phenomena, such as reli-
gious identification.”146(p229)
Tools and therapies related to spirituality
There were six articles that dealt with tools and
formal therapies for use with palliative patients
that incorporated an aspect of spirituality. One
paper147 reported initial efforts to validate—the
Systems Belief Inventory (SBI), a tool designed to
measure religious and spiritual beliefs and prac-
tices and the social support derived from a com-
SINCLAIR ET AL.
munity sharing those beliefs. While reporting that
the SBI met tests of internal consistency, test–
retest reliability and convergent, divergent, and
discriminant validity, there was confusion on the
part of this reader as to how they separated the
concept of spirituality and religion. In identifying
that, 10 of the 15 items asked about religious rit-
uals and practice and belief in a supreme being,
while the remaining 5 items focused on support
from one’s religious or spiritual community; the
confusion persisted. A second study set out to
validate a measurement of “a good death,148 a
term that has been used informally in palliative
care for decades.149 While the authors reported
three factors that affected a good death (spiritual
beliefs, control, and a belief that death was a re-
lief to suffering) and reported acceptable internal
consistency and test–retest reliability, the most
striking limitation was the sample (n  596) se-
lected for the study, consisting of four cohorts:
undergraduate medical students, master’s degree
nursing students, graduate students from the life
sciences, and practicing hospice nurses. While
these four cohorts provided interesting insight
into this concept, one only wonders what the dy-
ing patients themselves would consider the great-
est factors in “a good death,” especially because
they are the ones who are actively dying. Further
problems with this study and the concept of “a
good death” were identified in an article entitled,
“Is there such a thing as a good death,”150 which
provided a critical perspective on the concept.
Walters, the author, draws attention to the dual-
istic nature of the concept and argues that “strug-
gle” should be considered as an aspect of a good
death based on the death of Jesus Christ. He
writes, “Ironic as it may seem, the death of Christ
provides us with the ultimate anti-good-death
story.”150(p407) Citing Walter,151 Walters notes
that the idea of a good death and palliative care
in general find support in individualistic soci-
eties, a commonality that is shared with the con-
cept of euthanasia.150(p406)
Chochinov provided a list of interventions
aimed at “the maintenance of dignity,”99(p2253) in-
cluding a battery of questions that address this
important aspect of patient’s well-being. While
Chochinov notes that further studies need to val-
idate dignity-conserving care, his discussion of
the topic concludes with the following words,
stressing the importance of the caregiver as a per-
son in the healing process. He writes,
SPIRITUALITY LITERATURE REVIEW
Dignity-conserving care comprises not only
what one does to patients, but how one sees
patients. . . . When dying patients are seen,
and know that they are seen, as being wor-
thy of honour and esteem by those who care
for them, dignity is more likely to be main-
tained.99(p2259)
Breitbart109 discusses the need for spirituality-
based psychotherapy groups in helping patients
with advanced cancer maintain meaning—a key
in counteracting requests for hasten deaths. Bre-
itbart anchors his work, as we discussed before,
in the work of Victor Frankl and therefore defines
spirituality in terms of “meaning.” Finally,
Kissane et al.123 propose the adoption of “De-
moralization syndrome” as a relevant psychiatric
diagnosis for palliative care. Demoralization syn-
drome is defined as “a psychiatric state in which
hopelessness, helplessness, meaninglessness, and
existential distress are the core phenom-
ena.”123(p13) The authors note that the syndrome
can be differentiated from depression, although
they call for further formal studies investigating
the validity of such a diagnosis.
Effects of religion in palliative care
Three articles focused on the effects of religion
on perceptions of death. The first study152 found
that strong religious conviction and belief in an
afterlife were associated with less anxiety, death
depression, and death distress. The sample con-
sisted of 200 members of the general public, most
of whom were undergraduate students and a
handful of other individuals, including employ-
ees of the university. There was no mention of
how these subjects were recruited. A second
study,153 on the reflections of relatives (n  639)
who’s loved one had recently died, reported that
acceptance of death was seen as more common
among those who had a strong religious convic-
tion, but was not related to belief in an afterlife.
Because of confounding variables and the fact
that these reports were based on relatives’ per-
ceptions, the author concluded that “whether or
not religion is a help around the time of death
cannot be answered with any certainty.”153(p86)
Yates et al.154 used a questionnaire of religious
variables (there was no mention of whether the
tool had been validated), to yield data from 71
patients with advanced cancer. It was reported
473
that religious belief had a “substantial” positive
correlation to life satisfaction, while religious ac-
tivity was significantly correlated to life satisfac-
tion and happiness. Of the 36 patients who had
since died, there was no correlation between re-
ligious variables and duration of survival. By way
of limitations, these studies seemed to be plagued
with the same problems as the general health and
spirituality research mentioned above, including
confounding variables and sample issues.
Spirituality and palliative care professionals
Only five articles dealt with the topic of spiri-
tuality and palliative care professionals directly,
demonstrating the need for further research.
O’Connor et al.115 explored the spirituality of pal-
liative care professionals in a small attitudinal
study of present (n  11) and past (n  11) hos-
pice workers, using a mail questionnaire. Past
hospice workers had a strong religious educa-
tional background (64%) in comparison to the
present workers (36%). Respondents also re-
ported that spiritual care was something learned
on the job, required time to become skilled in and
while being viewed as a shared role, few partic-
ipants agreed that all hospice staff should pro-
vide spiritual care (27%). It was also reported that
patients made hospice workers more aware of
spirituality (73%). Both groups (past and present
workers) felt they understood their own spiritual
needs (82% and 64%), and only 55% of respon-
dents in both groups believed that there was an
afterlife. While respondents were given an op-
portunity to provide feedback on religious edu-
cation and their enjoyment of religious services
(36% current, 91% past), they were not asked
whether they considered themselves to be reli-
gious.
Millison80 interviewed eight caregivers who
worked with the terminally ill, consisting of
physicians (2) nurses (2) social workers (2) and
clergy (2), all of whom who had been involved in
a conference on hospice and Judaism. Unfortu-
nately, this study did not describe a qualitative
method and provided no discussion on the
method of analysis. All eight participants re-
flected a strong connection between their own
spirituality and the impact this had on their in-
teractions with patients. The second overarching
theme identified by Millison was that all the care-
givers interviewed felt they received more “spir-
474
itually” from patients than they were able to give.
Participants also spoke of the importance of vul-
nerability, honesty and humility in being present
spiritually. Limitations of this study included
lack of rigor, because no qualitative method was
identified and no description of analysis was pro-
vided. Second, the sample was entirely Jewish
and was recruited via convenience sampling,
which while not necessarily being a weakness,
was not reflected in the title of the article.
A second study by the same author79 studied
the correlation between job satisfaction and spir-
ituality in hospice directors (n  120, 67% re-
sponse rate) in New York, New Jersey, and Penn-
sylvania through a mail questionnaire. 72% of
respondents identified spirituality as a “very im-
portant” part of their lives, 91% of respondents
indicated that spirituality was important or very
important to hospice work and 97% felt it was im-
portant or very important to the hospice team in
their program. Millison and colleagues argue that
the findings seem to indicate that health care pro-
fessionals choose hospice work in order to answer
a spiritual calling,79(p77) but in interviewing di-
rectors exclusively (96% who identified them-
selves with a religious affiliation), one wonders
if this would be congruent with actual caregivers,
since it would be expected that leaders in general
would have a greater perception of their job as a
calling. This factor would be expected to be
higher in this sample since they were likely in
hospice care for a long period of time. Since the
sample solely consisted of hospice directors, who
had less patient contact than frontline staff and
may have been more akin to the spiritual lineage
of the hospice movement, the results could not be
generalized to hospice/palliative professionals as
a whole. While, producing some interesting sec-
ondary findings, the relationship between job sat-
isfaction and spirituality produced no statistically
significant results.
O’Connor and colleagues31 reported findings
of an ethnography on spirituality in palliative
care, which combined a literature search on the
topic and 13 individual interviews, 6 of whom
were staff and 7 of whom were patients. In cor-
relating the literature with the themes of the in-
terviews, the researchers discovered two domi-
nant themes: making the most of it now and
making sense, defining spirituality as “meaning
making.” The promising nature of this study un-
fortunately ended in the title as the authors used
a form of ethnography that did not involve any
SINCLAIR ET AL.
participant observation, a hallmark of ethnogra-
phy, and involved correlating interview themes
with the literature. While literature reviews are
important to qualitative researchers in formulat-
ing ideas of what research has been conducted
prior to entering the field and are often included
in the final write up, their usage as a tool in data
analysis of an inductive method such as ethnog-
raphy is a technique that these writers have never
witnessed.155,156 While confirming previous
health and spirituality research, these findings
could not rectify the inherent methodological is-
sues, which made the study’s utility severely lim-
ited.
White13 utilized cooperative inquiry to explore
the concept of spirituality as understood by
nine multidisciplinary professionals working at
two cancer centers. White discovered that
group members saw spirituality being expressed
through the search for meaning or purpose and
a sense of connection. There was also a sense
among participants that spirituality affected the
way in which care was given and involved tacit
skills that were often hard to describe. A strong
theme of the study was the positive effect expe-
rienced from participants as a result of partici-
pating in the study, many of whom reported an
increased sense of confidence in their ability to
provide spiritual care.
The literature that did attempt to move beyond
attitudinal research predominantly focussed on
how professional’s spirituality impacted the set-
ting. However, there was minimal attention given
to how the setting impacted professional’s own
spirituality. Initial studies have reported the spir-
itual impact of working in palliative care, in-
cluding hospice nurses having a stronger belief
in the afterlife and a stronger sense of satisfaction
in life and work than nonhospice nurses87; a sense
that spirituality became more meaningful among
occupational therapists as a result of working in
palliative care82; and the belief that spirituality
was a central experience in palliative care work
according to an interdisciplinary palliative care
team.51 A focused inquiry of the effects of pallia-
tive care on professional’s including exploration
into potential spiritual challenges in hospice and
palliative care is needed.86,157
Finally, while palliative patients have ex-
pressed the importance of specific attributes of
palliative care professionals that contribute to
spiritual well-being, such as compassion, empa-
thy, respect, self-awareness, nonabandonment,
SPIRITUALITY LITERATURE REVIEW
and “being present,”76,85,127,133 there has been a
relative impoverishment of research on how pro-
fessionals develop such tacit skills. Recent re-
search has demonstrated that spiritual care train-
ing for palliative care professionals produced
significant and sustained improvements in com-
passion toward the dying; compassion toward
oneself; attitude to one’s family; satisfaction with
work; reduction in work-related stress and in
attitudes toward colleagues.81 Initial research
within palliative care has also discovered the im-
portance of reflecting on one’s spirituality,84,124,158
and treating patient’s as persons5,83,139,159; how-
ever, further research needs to be conducted in
regards to what factors contribute to these prac-
tices and attributes.
CONCLUSION
Spirituality and health research has developed
from relative obscurity 20 years ago to a thriving
research field at present, particularly in the divi-
sion of palliative care. Spirituality, as a result of
this intent analysis, has been reduced largely to
a concept void of religion, an instrument to be
utilized in improving health, and focused pre-
dominantly on the self largely in the form of the
patient. While spirituality is uniquely understood
and experienced by individuals, it is also a chord
that can serve to bind humanity together. This
collective component of spirituality has not been
explored and is largely overshadowed by an in-
dividualistic approach that has failed to take into
account the common threads that may bind pa-
tients, families, and health care professionals to-
gether through shared experience. While spiritu-
ality in palliative care is a central aspect of the
discipline’s history and takes on a different mean-
ing than other areas of health care, these tenden-
cies are still very much apparent, propagating a
form of practice that reduces spirituality to sim-
ply another tool in our treatment repertoire, hav-
ing been stripped of its mystery by empiricism,
to be administered to the dying patient by the
skilled practitioner. Furthermore, although spiri-
tuality is deemed to be an important component
of palliative care by both professionals and pa-
tients, discussions have largely focused on con-
ceptual and attitudinal issues, with little insight
into the spiritual experiences of these individuals
and how such “spiritual” attributes are culti-
vated. The literature also seems to assume that
475
spirituality is a positive aspect of palliative care
and health care in general. Finally, there is a void
of qualitative research on spirituality and pallia-
tive care, particularly research investigating the
actual palliative care setting. The need for more
rigorous qualitative research both within pallia-
tive care and spirituality and health literature in
general is evident.3
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Address reprint requests to:
Shane Sinclair, B.A., M.Div., Ph.D.(c)
Spiritual Care Services
Foothills Medical Centre
1403 29 Street NW
Calgary, Alberta T2N 2T9
Canada
E-mail: shane.sinclair@calgaryhealthregion.ca
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