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Invited Commentary
June 24, 2013

Advancing Research on Spiritual Influences at the End of Life
Comment on “Provision of Spiritual Support to Patients With Advanced Cancer by Religious Communities and Associations With Medical Care at the End of Life”

Author Affiliations
Author Affiliations: Department of Sociology, University of Texas, San Antonio (Dr Ellison); and Sinai Urban Health Institute, Mt Sinai Hospital, Chicago, Illinois (Dr Benjamins).
JAMA Intern Med. 2013;173(12):1117-1118. doi:10.1001/jamainternmed.2013.922

Balboni and her team1 continue to highlight the role that religiousness and spiritual support play in the lives of patients with advanced cancer. Given the accumulating evidence linking aspects of religion and spirituality to a variety of health and health care–related outcomes, this line of work is needed to expand the literature to end-of-life (EoL) treatment decisions and well-being. The current study adds to the discussion by addressing the role of religious communities, in addition to spiritual support offered by health care providers and personal religiousness. This study also provides an ideal stepping point from which to discuss several conceptual and methodological issues.

To begin, studies in this area would benefit from the decades of work within the pastoral care field concerning the conceptualization and assessment of spiritual needs among medical patients. Although there is still a lack of consensus over what constitutes core spiritual needs and how to best measure them, most investigators agree that multiple dimensions are involved. For example, one prominent model of spiritual assessment includes the following dimensions: (1) beliefs and meaning; (2) vocation and obligations; (3) experience and emotions; (4) courage and growth; (5) ritual and practice; (6) community; and (7) authority and guidance.2 Given the theoretical foundations and clinical experiences used to develop such models, attempts to measure these complex ideas with single items are likely to be inadequate. At the very least, it is important to distinguish between spirituality, which is the broader of the 2 constructs, and religion, which refers primarily to the social-institutional component within this domain. In the current study1 (and in the numerous other studies based on the Coping With Cancer data set), these 2 concepts are conflated within the measures of spiritual care. Specifically, the primary measure of spiritual care asks how well the patient's religious/spiritual needs are being met by his or her religious community.

The measures of spiritual support used by Balboni et al1 are also hampered by a lack of specificity regarding the timing and content of the support. In respect to the former, the spiritual support questions were asked in the outpatient clinic approximately 3 to 4 months before death (on average). Nothing is known about support received during the remainder of their illness, including the final stage. Thus, ideal measures should address at what point, and how frequently, the support is provided. Objective measures of support, such as from chaplains' documentation in medical records, would be one example of how to address some of these concerns. In regard to the content of the spiritual support, it would be valuable to know more about (1) how such assistance is being provided to the patient and (2) which types of support are most or least helpful. Recent developments in theory and research on congregational support systems are useful for thinking about how to advance this line of work related to support received from religious communities. Dimensions of congregational support include instrumental support (goods and services), socioemotional support (making the recipient feel loved, valued, and cared for), and spiritual support (reinforcing core beliefs and helping the recipient understand and live out his or her faith commitments more fully).3 These and other types of assistance can be provided by religious groups via formal programs, informal contacts among religious group members, or interactions with clergy members. Future research on religion/spirituality and EoL decisions would be strengthened by the inclusion of questions related to these kinds of supports in meeting spiritual needs.

Other aspects of religiousness and spirituality that predict well-being in the general population may also deserve consideration in relation to EoL outcomes for terminally ill patients. Among these constructs are (1) meaning or the sense that one's life has had a purpose or positive impact; (2) forgiveness and reconciliation; and (3) emotions such as gratitude. In addition, the role of “spiritual struggles” or negative experiences of spirituality encountered by patients at EoL may be consequential. Three types of spiritual struggles might be particularly relevant.4 The first is “divine struggles,” in which case a patient might wonder why God, especially a good and loving God, would allow them to suffer so much. This may lead to feelings of divine abandonment or a questioning of divine caring or power. A second type of spiritual struggle may involve religious doubts, in which the patient comes to question core elements of his or her belief system as a consequence of the illness experience and prognosis. Yet, a third type of spiritual struggle is interpersonal, involving relationships with individuals in one's religious community. In the context of terminal illness, this might occur when the community provides too little assistance, attempts to do too much (eg, impinging on the patient's privacy), or engages in support efforts that are well-intended but poorly matched with the needs of the patient. This latter issue was mentioned by Balboni et al1 as a possible explanation for why support from a religious community does not positively influence quality of life near EoL. Examining any of these additional concepts in future studies on EoL topics would be illuminating.

Finally, the article by Balboni and colleagues1 raises important questions regarding the role of race and ethnicity in these types of relationships. In particular, are associations between spiritual support and EoL decisions contingent on minority group membership? African Americans have a difficult history with the medical establishment, generally stemming from past and present experiences of discrimination. Not surprisingly, they tend to report less satisfactory care5 and less trust in health care providers.6 This could explain why African Americans are reluctant to relinquish EoL care “prematurely” in favor of more aggressive EoL treatments compared with white patients.7 This view may be reinforced by families and friends, as well as by religious communities. Unique relationships between race and religion may factor in here. First, African Americans are more religious than most other segments of the population.8 Furthermore, this religiosity involves strong community ties, personal spirituality, and a practical theology evolved to assist in coping with suffering. Moreover, African American churches often deliver greater support, and African American clergy often have more expansive roles in the lives of their congregants, compared with predominantly white churches. Studies have also shown that African Americans derive greater mental and physical health benefits from various aspects of religiousness and spirituality compared with white patients. The overall impact of these various dynamics is not clear, but it seems likely that the associations between spiritual support and EoL outcomes could vary by race. At the most basic level, researchers need to separate racial and ethnic minorities as opposed to lumping them into 1 “minority” group. It would also be informative to examine race as a moderator and then estimate stratified models if indicated.

We appreciate the work of Balboni and her team1 as a first step in identifying associations between religious and spiritual support and EoL outcomes. As they, and other researchers, work to advance this area of study, we hope that the methodological and conceptual issues discussed herein can be addressed. Until they are, we believe that conclusions based on this work should be more cautious. The field would benefit from a greater focus on how to clarify the ambiguities left by available data as opposed to offering conclusions (or even practical implications) that may be premature.

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Article Information

Correspondence: Dr Benjamins, Sinai Urban Health Institute, Mt Sinai Hospital, California Ave at 15th St, Room K443, Chicago, IL 60608 (maureen.benjamins@sinai.org).

Published Online: May 6, 2013. doi:10.1001/jamainternmed.2013.922

Conflict of Interest Disclosures: None reported.

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