An Exploratory Study of Spiritual Care at the End of Life

INTRODUCTION

Although the healing professions have roots in religious and spiritual traditions,¹ end-of-life care is often provided in a technological and spiritually barren landscape.² In the United States, for example, 67% of people die in hospitals or long-term care facilities without assured access to spiritual care.³ Patients approaching the end of life traverse an unknown spiritual terrain, and a growing body of research shows that this journey often awakens a uniquely spiritual dimension among patients and family caregivers; most desire acknowledgment and support for their spiritual needs from health care workers.^4–7 Physicians,⁸ nurses,⁹ and others are being called upon to assume greater responsibility for providing spiritual care, tasks that have been traditionally assigned to pastoral caregivers and clergy.¹⁰ Controversy remains, however, over whether clinicians and other health care workers can or should provide this care.^11–13

The definition of spiritual care is uncertain and has multiple interpretations. A theological or religious understanding highlights the facilitation of individual meaning, connectedness, and inner peace and is often inclusive of religious rituals, beliefs, and communities.¹⁴ Nursing studies define spiritual care as referring to others, facilitating religious rituals and practices, and being present to patients.¹⁵ Despite its promotion by the Institute of Medicine,¹⁶ the National Hospice and Palliative Care Organization,¹⁷ and the World Health Organization,¹⁸ spiritual care at the end of life remains poorly understood, and it is unclear how this type of care is actually delivered.^19,20 Our study was part of a multimethod project to examine the spiritual care of dying patients and family caregivers.²¹ To gain insight about this type of care, we used qualitative research methods to explore the perspectives of clinicians and other health care workers who were identified by dying patients and family members as providing spiritual care at the end of life.

METHODS

The qualitative study design used semistructured interviews that were conducted by a study investigator (B.M.U.). We used a nominated 2-stage sampling procedure. First, patients were recruited during a 13-month period from January 2005 to February 2006 from palliative care, family medicine, and geriatric medicine inpatient services, as well as from oncology clinics, within a university tertiary care health system in the southeastern United States for participation in a survey study of spiritual care.²¹ Patients were eligible if they were capable of understanding and responding to interview questions, and their attending physicians’ clinical judgement was that they would not be surprised if the patient died within the year. These patients’ family caregivers were also eligible for interview regardless of the patient’s capacity; they were interviewed as potential recipients of spiritual care, not as surrogates for patients’ experiences.

Both patients and family caregivers were asked to identify specific individuals who were most involved in the patients’ spiritual care, and more than one person could be named. A total of 38 patients and 65 family caregivers identified 237 spiritual caregivers; 95 (41%) were family or friends, 38 (17%) were clergy, and 66 (29%) were clinicians and other health care workers. Because our focus was on the perspectives of clinicians and other health care workers, we used these nominees to select participants from several health care disciplines (eg, medicine, nursing) to enhance variation in our sample.²² As a palliative care coordinator in the health care system, the interviewing investigator had professional interactions with several of the participants.

Our review of the literature on spiritual care and the clinical experience of the investigators contributed to development of a semistructured interview guide (Supplemental Appendix, available online at http://www.annfammed.org/cgi/content/full/6/5/406/DC1) that explored participants’ perceptions of end-of-life care encounters. Participants were asked to describe 2 patient interactions: 1 in which spiritual care was a core element and the caregiver was confident in delivering this care, and 1 in which the caregiver had difficulty providing spiritual care. The guide included prompts about approaches and strategies regarding ethnic, racial, and religious differences, as well as factors that facilitated or impeded the provision of spiritual care. We tested the interview guide with 2 participants, which resulted in minor changes in formatting. In addition, new themes that emerged from the interviews were incorporated and tested in subsequent interviews.

The interviews were conducted in person, tape recorded, professionally transcribed, and checked for accuracy by a single investigator who is a nurse experienced in both palliative care and qualitative research methods. Transcripts were iteratively reviewed during data collection by the interviewer and the principal investigators—a family physician with experience in qualitative research (T.P.D.) and a geriatrician with expertise in palliative care (L.C.H.). Initial coding was performed by the interviewer and the family physician. The interviews were read to identify emerging patterns using editing analysis, in which meaningful segments of text were coded.²² Concurrent independent analyses were performed by a chaplain who directs a clinical pastoral education program at an academic medical center (J.R.) and a gerontologist with expertise in caregiving and older minority adults (S.W.W.). All investigators subsequently met and iteratively reviewed the codes to reach consensus; themes were compared within and across interviews.

The final categories were reviewed by 3 participants in a process known as member checking.²² No new themes emerged in the last few interviews, after which we achieved data saturation. The data were analyzed using qualitative research software (QSR, N6),²³ and the study was approved by the University of North Carolina at Chapel Hill Institutional Review Board before its initiation.

RESULTS

All 12 participants were identified as spiritual care-givers by dying patients or their family members. The average age was 44 years (range 27 to 60 years); one-half were women. Nine were white, and 1 each was African American, Asian American, and Hispanic/ Latino. The professional backgrounds of the participants were as follows: 8 were physicians, 2 were chaplains/pastoral caregivers, 1 was a nurse, and 1 worked in facilities services/housekeeping. Most participants considered themselves to be not religious or slightly religious (n = 7) and not or slightly spiritual (n = 9). There was heterogeneity in self-reported faith traditions: nondenominational (n = 1), Hindu (n = 1), American Methodist Episcopal Zion (n = 1), atheist (n = 1), Catholic (n = 2), Jewish (n = 2), and Christian (n = 3).

Our analysis of the interviews resulted in identifying 3 major themes that were reported as core elements of spiritual care, in addition to impediments to delivering spiritual care. These themes were validated after the interviews by 3 participants, and the data suggested that interrelationships existed among the categories of spiritual caregiving. As a result, we built a conceptual framework that depicts the relationships among the categories (Figure 1⇓).²⁴ The principal investigator (T.P.D.) constructed an initial framework that was iteratively reviewed by the other analysts who participated in coding the data (B.M.U., J.R., S.W.W.) and then by an independent analyst with expertise in palliative care and health services research (L.C.H.).

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Figure 1.

Conceptual framework of spiritual caregiving at the end of life.

DISCUSSION

Despite the lack of consensus as to how spirituality is understood and defined in health care settings, there is a growing body of literature promoting spiritual care.^20,25 In our conceptual framework, being present is congruent with the perspective of Puchalski and colleagues,²⁶ who describe compassionate presence as a quality of spiritual care. Presence, according to this latter viewpoint, incorporates an intention to openness, to connection with others, and to comfort with uncertainty.²⁶ Being present and sharing personal beliefs and experiences, or “sharing the self,” were also major themes of spiritual care in a survey study of oncology nurses.²⁷ Another qualitative study of spiritual care stakeholders noted that “being there,” or empathizing, valuing, and listening and loving, were related process themes.²⁸

When being effectively present to dying patients and family members, spiritual caregivers—according to the framework—are predisposed to having open eyes, promoting an awareness of the patient’s illness experience. Rumbold also emphasizes the importance of mutuality in spiritual caregiving,²⁹ whereas Lunn defines spiritual care as “making a connection between yourself and that person,” in which people are connected or reconnected to their core beliefs, practices, and principles.³⁰ Our description of open eyes shares characteristics with these orientations and with a qualitative study of nursing home care staff that described intimate knowing—or knowing what is important to residents and what they value—as a major component of spiritual care.³¹

Caregivers who are fully present in encounters where the patient and caregiver mutually recognize each others’ humanity can engage in cocreating. The etymology of cocreating may be found in the theology of work literature, specifically in Catholic social teaching.^32–34 The locus of cocreating is proximal in our framework, focusing on working out a care plan among patients, family members, and health caregivers. Puchalski describes extrinsic elements of spiritual care as appraising and communicating the patient’s spiritual issues and incorporating the patient’s spirituality into the care plan.²⁶ Cocreating, from our viewpoint, shares some characteristics with these described elements, but it is more comprehensive and integrative.

Time was both a facilitator and inhibitor of spiritual care from the caregiver’s perspective. A qualitative study of physicians also identified lack of time as a barrier to the psychosocial spiritual care of dying patients.³⁵ Physicians in this earlier study described an inability to manage dynamic patient-physician relationships that were complicated by many subjective issues.³⁵ Our data suggest that effective communication may be tied to how well caregivers gather and interpret information, and how this information is narratively presented to patients and family members.

One noteworthy finding was the marked absence of explicitly religious practices or beliefs in our data. Although this absence may be attributable to the relatively nonreligious self-characterization of study participants, it has an important implication regarding spiritual care. Our participants reported that spiritual care was provided to individuals who were present to them in the context of recognized human value, dignity, and shared decision making, rather than through shared practices (ie, prayer), or through discussions of religious or theological issues at the bedside.^8,36

To our knowledge, this study describes the first empirically based conceptual framework of spiritual caregiving. Sulmasy³⁷ offers a model in which patients come to the clinical encounter in a spiritual and bio-psychosocial state, which is a composite of the patient’s spiritual history and their biopsychosocial makeup. Spiritual interventions may be introduced during this composite state by first modifying the spiritual state, which then affects the biopsychosocial state.³⁷ Our data and conceptual framework suggest that spiritual care may be more integrated and process driven than the Sulmasy model.

Puchalski provides a role-based model of spiritual care in which an interdisciplinary care team member attends to a specific care dimension; however, the chaplain remains the primary spiritual caregiver.²⁶ Another role-based model emphasizes a tiered approach to the spiritual assessment and care based on the individual competencies of the care team.³⁸ In contrast to both models, our framework suggests that spiritual care may be effectively and interchangeably provided by multiple members of the care team.

As an exploratory study, our conceptual framework should be considered preliminary and open to modification. Qualitative studies are not statistically representative of any population, but they do provide an in-depth examination of complex phenomena, such as the investigation of spiritual care.²⁴ The study was based on self-report of caregivers’ perspectives, and we did not attempt to validate behaviors. Our nomination process presumed that participants saw themselves as providing spiritual care. It is possible that participants viewed the care that they described from a different framework, such as holistic care or the provision of emotional support. Even so, the interview guide included open-ended questions that asked participants how they understood and defined spiritual care.

In summary, we found that clinicians and other health caregivers who provide end-of-life spiritual care describe a series of highly fluid interpersonal processes—in the context of mutually recognized human values and experiences—rather than a set of prescribed and proscribed roles. Being present, open eyes, and cocreating are the primary components in a conceptual framework that depicts these processes. Future research directions may include a comparable study with patients and family caregivers at various stages of palliation to determine the degree of concordance across these stakeholders. Preliminary intervention work should focus on the applicability of this framework to enhance the spiritual care and, concomitantly, the overall care of patients living in the light of death.