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Placing Religion and Spiritualityin End-of-Life CareTimothy P. Daaleman, DOLarry VandeCreek, DMin

IN 1995, THE SUPPORT (STUDY TO UNDERSTAND PROG-noses and Preferences for Outcomes and Risks of Treat-ment) trial stimulated a reexamination of systems of carefor seriously ill and dying patients.1 This study has ac-

celerated efforts to improve end-of-life care and has indi-rectly promoted a rapprochement among religion, spiritu-ality, medicine, and health care.2 The goal of a qualitycomfortable death is achieved by meeting a patient’s physi-cal needs and by attending to the social, psychological, andthe now recognized spiritual and religious dimensions ofcare.3,4 This perspective is highlighted in a recent consen-sus statement that includes the assessment and support ofspiritual and religious well-being and management of spiri-tual and religious problems as core principles of profes-sional practice and care at the end of life.5 Yet multiple ethi-cal and pragmatic issues arise. For example, should physiciansidentify patients’ spiritual and religious needs and inter-vene in clinical settings? The roles and responsibilities ofpatients and physicians in this scenario are unclear. An un-derstanding of religion and spirituality within the contextof end-of-life care, quality of life, and patient-clinician in-teractions may illuminate the problems and potentialitiesfor both patients and clinicians.

Religion: The Provision of Beliefand the Establishment of an EthicThe distinction between religion and spirituality is an im-portant and nuanced one. From its Latin roots (religio), re-ligion has been associated with various connotations: thetotality of belief systems, an inner piety or disposition, anabstract system of ideas, and ritual practices.6 In end-of-life care, religion and religious traditions serve 2 primaryfunctions: the provision of a set of core beliefs about lifeevents and the establishment of an ethical foundation forclinical decision making.7 Religious doctrine and belief sys-tems provide a framework for understanding the human ex-perience of death and dying for patients, family members,and health care professionals. Intuitively, strong religiousbeliefs, whether expressed or privately held, should be as-sociated with a decreased fear of death and greater accep-tance of death. However, research that has examined the in-

teraction between religious belief and attitudes toward deathhas produced controversial results that generally do not sup-port this assumption.8

In addition, religious traditions include substantial nor-mative and ethical issues in end-of-life care.7 Ethics in thiscontext spans a wide range of human interaction frominterpersonal to organizational levels and represents themoral response to approaching and encountering death.Religion-based ethics provides a point of reference for clini-cal decision making and many religious groups, such as theNational Conference of Catholic Bishops,9 the UnitarianUniversalist General Assembly,10 and the ConservativeMovement’s Committee on Jewish Law and Standards,11

actively participate in public discourse about issues thataccompany the end of life (eg, palliative care, withdrawal ofadvanced life support, advance care planning). Althoughthese sources provide an ethical framework for decisions atthe end of life,12 religion-based ethics can both facilitate andimpede clinical decision making,13 which reflects a dynamicinterplay among patients, family members, clinicians, andinstitutions.

The issues of physician-assisted suicide (PAS) and eutha-nasia exemplify the complex interaction between religiousbelief and ethical decision making in end-of-life care. Re-cent studies have found an inverse association between mea-sures of religiousness and attitudes toward PAS. A surveyof physicians, nurses, and social workers in New York Cityfound that respondents who had lower levels of religiousbelief were more willing to endorse assisted suicide than thosewho reported higher levels of belief.14 This finding is con-sistent with a national study by Emanuel et al15 who foundthat oncologists who report high or moderate levels of re-ligious belief were less likely to perform euthanasia or PASthan those who reported no religious belief. In a nationalsurvey of US physicians representing specialties most likelyto receive patient requests for assistance with suicide or eu-thanasia, Meier et al16 reported that physicians who have noreligious affiliation were more likely to be willing to pro-vide assistance and to have complied with a patient requestfor PAS than those with a religious affiliation.

Author Affiliations: Departments of Family Medicine and History & Philosophyof Medicine, Center on Aging, University of Kansas Medical Center, Kansas City(Dr Daaleman); and The Healthcare Chaplaincy, New York, NY (Dr VandeCreek).Corresponding Author and Reprints: Timothy P. Daaleman, DO, Department ofFamily Medicine, University of Kansas Medical Center, 3901 Rainbow Blvd, Kan-sas City, KS 66160-7370 (e-mail: tdaalema@kumc.edu).

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These findings parallel those from patient populations aswell. A study of patients with amyotrophic lateral sclerosisliving in Oregon and Washington found that respondentswho scored higher on a scale measuring the importance ofreligion were less likely to consider assisted suicide than thosewith lower scores.17 In 2 studies of older adults, the degreeof self-reported strength of religious beliefs or role of reli-gion in life was inversely proportional with more permis-sive attitudes toward assisted suicide.18,19 For both patientsand physicians, these studies suggest that religious belief mayhave a significant effect on ethical decision making at theend of life.

Spirituality: Resources for Personal MeaningSpirituality may or may not be linked to religious beliefs,religious practices, or communities that support those prac-tices and beliefs.20 Terminally ill patients acknowledge agreater spiritual perspective and orientation than both non-terminally ill hospitalized patients and healthy patients.21

Although there are multiple interpretations of spiritualitywithin health care settings,22 constructs of meaning or a senseof life’s purpose have been suggested as primary compo-nents.23 For example, in women with advanced breast can-cer, maintaining a purpose or meaning in life has been iden-tified as an important aspect of self-transcendence andspiritual well-being.24,25 The coping literature delineates 2forms of meaning: implicit meaning and found meaning.26

Implicit meaning is an appraisal process that involves thegathering and processing of medical information.27 Foundmeaning, or meaningfulness, interprets and places this in-formation into a larger life context.26 Antonovsky28 de-scribes this generally positive, pervasive way of seeing theworld, and one’s life in it, as a “sense of coherence,” lend-ing comprehensibility and manageability.

Psychological states and quality-of-life outcomes havebeen the primary end points in end-of-life care studies thathave incorporated a measure of spirituality. For example,among oncology patients, modest correlations have beenfound between spirituality and lower levels of anxiety andpsychosocial distress.29,30 Additional studies suggest thatspirituality is also positively associated with subjectivewell-being21 and quality of life to the same degree as physi-cal well-being.31

Quality of LifeIn clinical and research settings, quality-of-life assessmentexamines the social, physical, and psychological influ-ences on patient illness, health, and well-being.32 Measuresof religiousness and spirituality that are specific to end-of-life care vary in their content, validity, and reliability, whichreflect the developmental state of work in this area. The Mc-Gill Quality of Life Questionnaire33 incorporates items toassess achievement of life goals and personal meaning, whilethe Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being31 scale contains questions that mea-

sure the comfort and strength derived from religious faith,in addition to a sense of meaning, purpose, and peace in life.The Systems of Belief Inventory,34 which was designed foruse in quality-of-life and psychosocial research examiningillness adjustment, measures religious and spiritual beliefsand practices and the social support that accompanies thosebeliefs and practices.

Religion and spirituality potentially can mediate qualityof life by enhancing patient subjective well-being throughsocial support and stress and coping strategies. Theoreti-cally, religious and spiritual beliefs may enhance subjec-tive well-being in 4 ways: promoting a salubrious personallifestyle that is congruent with religious or personal faithtraditions, providing systems of meaning and existential co-herence, establishing personal relationships with a divineother, and ensuring social support and integration within acommunity.35 Social support has been suggested as an in-tervening factor between quality of life and religion and spiri-tuality. The positive impact of social support and supportgroups on survival in cancer patients generated consider-able interest in the early 1990s,36 although follow-up stud-ies have failed to replicate earlier findings.37 Religious andspiritual beliefs have been found to be beneficial when ex-amined within theoretical models of stress and coping.38 Re-search on religious approaches to coping and problem solv-ing have been predictive of successful psychologicaladjustment to stressful life events.39 For example, Jenkinsand Pargament40 report that cancer patients who attributemore control over their illness to God have higher self-esteem and are more adjusted to their disease state than thosewho do not attribute such control to God.

Patient-Clinician Interactions and InterventionsAssessment of quality of life raises some practical and ethi-cal issues regarding the clinician’s role in spiritual and re-ligious support during end-of-life care. How do physiciansand nurses frame religious and spiritual concerns withinhealth care settings? Are religious and spiritual concerns sub-sumed within social and psychological constructs and do-mains that comprise an individual’s experience of illness anddisease, or are spirituality and religion conceptualized andviewed a priori? This tension is highlighted by recommen-dations and initiatives that incorporate religion and spiri-tuality in plans to improve care at the end of life. For ex-ample, assessment guidelines for palliative care plansdeveloped by the Institute of Medicine embed spiritual as-sessment within measures of emotional status.41 However,a report from the Commonwealth-Cummings project listsspiritual and existential beliefs as an independent modifi-able dimension of the patient’s dying experience.4

The inconsistent orientation and lack of conceptual clar-ity that accompany religion and spirituality raise several sec-ondary questions relative to the operationalization of anyguideline or recommendation. Who is responsible forassessing and meeting the spiritual and religious needs of

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dying patients: physicians, nurses, social workers, psycholo-gists, or clergy and health care chaplains? Some have ad-vocated that physicians or other members of the health careteam should address these issues.42 Yet within the patient-physician relationship, physicians wield a power that islargely positive and salutary, and this power may result ina loss of patient autonomy if left unchecked or un-guarded.43 In the development of treatment goals and careplans, patient autonomy can be threatened when physi-cians’ religious convictions are dissonant with those of pa-tients and family members. For example, studies that mea-sured physician religiousness and PAS support theassumption that physicians’ religious belief may influencethe patient-physician relationship. In light of these con-cerns, data from a US national survey suggest that clergyand professional pastoral care providers assume a primaryrole for religious and spiritual concerns in clinical set-tings.44 In this survey, more than 80% of family physiciansreported that they refer to these clergy and pastoral care pro-viders in conditions associated with end-of-life care. How-ever, if quality of life is enhanced by the search for per-sonal meaning, should physicians and other health careprofessionals also incorporate these aspects in care? Wouldphysicians’ approaches differ from those of professional pas-toral care providers tied to religious or faith traditions? Theseissues are fertile ground for future research.

Future Directions: Hospice as a Sentinel ModelThe hospice movement provides a case study to examinethe development of religion and spirituality within end-of-life care. The foundation of the modern hospice movementwas grounded in a Western Christian religious tradition.45

This faith tradition served a primary function for hospiceby providing an ethical foundation and a set of core beliefs,initially for a small committed group of people in the UnitedKingdom in the 1960s. Saunders, who pioneered the hos-pice movement, provided much of the philosophical frame-work that still underlies contemporary hospice,46 and themission statement for one of the original hospices, St Chris-topher’s, remains rooted within this religious tradition.45 Butas the hospice movement grew and encountered patients andhealth care professionals who often did not share this tra-dition, hospice had to accommodate and modify its mis-sion or risk alienating a constituency that it was foundedto serve. Today hospice maintains a global approach to pa-tient care with an emphasis on relieving suffering, but thereligious basis and foundation for this care are conspicu-ously absent.

Religious traditions provide a framework for both indi-vidual and organizational ethics, and it is uncertain how loos-ening the ties of hospice to a specific religious tradition mayaffect the hospice ethos. For example, although the placeof euthanasia and PAS is often minimized and discouragedin hospice settings,46 recent research suggests that these or-ganizational values may not be pervasive. In one survey of

US oncologists, approximately 40% of patients were receiv-ing hospice care at the time of euthanasia or PAS,15 whilean additional study found that 32% of patients in Oregonenrolled in a hospice program requested a prescription forlethal medications.47 Although these studies do not implythat hospice care has a waning emphasis on religious andspiritual concerns, it is unclear whether these findings rep-resent a limitation of hospice care in individual cases, a com-passionate response to the control of pain and suffering inthese settings, or the fact that most hospice care is only one,albeit important, component of the patient’s life and decision-making contribution.

Hospice considers the religious or spiritual dimension of theperson as independent and not subsumed within social orpsychological domains. The World Health Organization alsoholds a similar perspective and defines palliative care as

the active total care of patients whose disease is not responsive tocurative treatment . . . [when] control of pain, of other symp-toms, and of psychological, social, and spiritual problems is para-mount.48

The understanding of spirituality has also evolved. For ex-ample, hospice’s original religious definition of spiritualityas a relationship with God or a Divine Other has been re-placed by a definition of spirituality as the personal and psy-chological search for meaning.45 This trend is part of a largercultural movement in the United States in which there is atransition from a traditional membership in a faith commu-nity to a spirituality of seeking.49 The increase in quality-of-life research that includes measures of spirituality and thespiritual resources in hospice care are manifestations of thewidespread acceptance of a spirituality that is uprooted fromits religious sources. The distancing of religious beliefs fromspirituality has facilitated a greater and necessary accep-tance of hospice into a multicultural world, one in whichhospice workers may move about among many different faithtraditions.

Yet religion and faith traditions still occupy a substantialplace in end-of-life care. From a social constructionist per-spective, social determinants such as social support, edu-cation, gender, and religion are primary elements that fa-cilitate the interpretation and understanding of death anddying.50 In this context, religious and faith traditions maybe part of the scaffolding in the construction of meaning asdeath approaches. Spirituality may be viewed as the ac-tions and interactions of an embodied human actor who isfacing death and creating a personally meaningful socialworld, a constructed world that can be either a resource oran encumbrance.50 For hospice and palliative care this hasseveral implications: a richer appreciation of the social anddemographic determinants of a quality care at the end oflife, a greater understanding of the psychological and theo-logical processes involved in “meaning making,” and an em-phasis on assessment strategies and interventions that areinclusive of these factors.

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When viewed from either a constructionist or phenom-enological perspective, the ties that bind hospice to pallia-tive care in the assessment and management of spiritual con-cerns are best understood by examining the locus of care atthe end of life. Multiple connotations of hospice exist, yetmany associate this term with a physical place of respite andcare. In the evolution of end-of-life care and the emergenceof the disciplines of palliative care, there has been a shift inthe common understanding of hospice from an institutionthat provides care to a philosophy that embodies the ac-tive, total care of the individual.51 Hospice and palliative carehave negotiated much of the difficult terrain that accom-panies religion and spirituality and medicine, and they havedone so by moving the locus of care out of biomedical in-stitutions back into the community. By offering a health caredelivery model that incorporates a community-based ap-proach while emphasizing the uniqueness of the indi-vidual, regardless of the importance of religion or spiritu-ality in the individual’s life, hospice and palliative care providea structure for and facilitate the processes that are involvedin this most basic of human experiences, that of dying.

Funding/Support: Dr Daaleman is supported by the Robert Wood Johnson Foun-dation Generalist Faculty Scholars Program and the John A. Hartford Foundation.Acknowledgment: We thank Sarah A. Forbes, RN, PhD, for her review of the manu-script.

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