November 2018 Article of the Month
by John Ehman, Editor, ACPE Research Article-of-the-Month
and Manager for Pastoral Care, Penn Presbyterian Medical Center, Philadelphia PA
Balboni, T. and Balboni, M. "The spiritual event of serious illness." Journal of Pain and Symptom Management 56, no. 5 (November 2018): 816-822.
SUMMARY and COMMENT: This month's selection is a reprise of findings from the Religion and Spirituality in Cancer Care (RSCC) study previously reported in three articles published 2010-2012 [--see Items of related Interest, §I, below]. The authors state their purpose at the outset: "...[B]y summarizing RSCC patient findings, adding illustrative patient quotes and stories from its 68 participants, and placing these findings in context of the larger literature, we aim to provide an in-depth account of patients' experiences of spirituality within advanced illness" [p. 816]. This article is aimed at a medical audience, but it should be useful to chaplains for its explication of how patients may see the importance of spirituality and may sense spiritual concerns. This would be a good article for discussion with Level 1 CPE students and chaplains moving into the area of palliative care, but it should also be of general interest to advanced chaplains.
Participants were from four academic medical centers in the Boston, MA area. The sample was 78% Christian, with 46% being Catholic --in line with regional demographics but higher than the national average (24%). Also, "53% of patients described themselves simultaneously as moderately to very religious and spiritual, 19% were spiritual but not religious, and 25% were neither spiritual nor religious" [p. 817].
...[P]atients were asked to respond yes or no to the question: "Has religion or spirituality been important to your experience with your illness?" Most patients (78%) indicated that religion or spirituality had been important to their cancer experience. Patients who indicated religion/spirituality (R/S) to be important within illness were then asked: "How has religion or spirituality been important to your experience with your illness?" [p. 817]
Qualitative analysis identified five primary themes, often "interrelated and mutually sustain[ing] one another" [p. 820].
Patients were also asked about spiritual concerns by means of a checklist [--see Items of Related Interest, §II, below], with items divided into those that indicated "Spiritual Seeking" (i.e., "recognition of a spiritual deficit that engendered a search for existential and/or spiritual resources to fill a void") and "Spiritual Struggle" (i.e., "the presence of a spiritual tension or conflict over sacred issues and questions") [p. 820]. Among the findings that emerged from this part of the study:
- Spiritual Coping -- "defined as patients' expressions of how spirituality impacted their endurance of the cancer experience" [p. 817]
- "This was the most widely expressed theme within the open-ended interviews" [p. 817]. Constituent subthemes focused on extending longevity, with others being a promise of a potential cure, source of strength, source of meaning, foundation of comfort, acceptance, and emotional stability.
- Spiritual Practices -- "defined as patients' descriptions of practices important to their cancer experience" [p. 818]
- "The most frequently noted practice was prayer.... ... The most cited reason for prayer was to ask for strength..." [p. 818].
- Faith Beliefs -- "defined as patients' references to spiritual beliefs important to their cancer experience" [p. 818]
- "Most patients mentioned one or more beliefs as playing an important role," with 13 of 28 patients who expressed this theme indicating that "spirituality had played a significant role in their life independent of and preceding cancer" [p. 818]. Other subthemes revolved around trusting God's will and belief in an afterlife. Some beliefs were explained to be spiritual but not religious.
- Spiritual Transformation -- "defined as patients' expressions of transformation in [religious/spiritual] beliefs or participation resulting from the cancer experience" [p. 818]
- Raised by 38% of respondents, subthemes included a new or deeper reflection on faith and mortality, enhanced personal faith, an increase in faith-based activities, a heightened sense of companionship with God or a higher power, and a greater appreciation for life and health. The authors comment further that spiritual transformation "would appear to be a key pathway that leads to spiritual resolution and peace, and that "[t]his highlights the importance of spiritual care, the role of chaplains, and the importance of spiritual communities in assisting and supporting the large majority of patients who face spiritual concerns in terminal illness" [p. 821].
- Faith Communities -- "defined by patients referring to a religious or spiritual community (e.g., clergy or other spiritual supporters) as important to their cancer experience" [p. 818]
- This was expressed by 11 of 39 respondents. The researchers comment especially here that while "[r]eligious communities can hold a powerful social role in the life of patients facing life-threatening illness as it offers supportive relationships...," "studies also suggest that serious illness decreases patients' religious community participation and religious service attendance [p. 820].
Related to this last point, the authors note that "two-thirds of patients who said that spirituality or religion was unimportant acknowledged spiritual concerns," which "...highlights how spiritual histories should be inclusive of inquiries about spiritual concerns, even for those not religious or spiritual" [p. 821]. "Without additional probing or employment of more sophisticated spiritual checklists, about 15% of patients will likely be classified as uninterested in spirituality or religion when in fact there are multiple spiritual issues under the surface" [p. 821].
- "Most participants (86%) identified one or more religious or spiritual concerns." [p. 820]
- "...[T]he vast majority of patients (93%) either considered [religion/spirituality] important to illness and/or were experiencing spiritual concerns" [p. 821].
- "Most patients (83%) indicated that they were spiritually seeking within their illness. The most common spiritual seeking items, endorsed by approximately half of patients, included 'seeking a closer connection with God or one's faith,' 'finding meaning in the experience of your cancer,' 'what gives meaning to life,' and 'thinking about forgiveness.'" [p. 820]
- "The most commonly endorsed struggle (named by 30% of patients) was 'wondering why God has allowed this to happen.'" [p. 820]
- "The only significant predictor of spiritual concerns was younger age." [p. 820]
- Regarding the "Spiritual Struggle" responses: "Notably, 43% of patients described experiencing one or more of the six spiritual struggles defined by Pargament's negative religious coping items." [p. 820; and see Items of Related Interest, §III, below].
- Fifteen percent of the sample said that religion or spirituality was not important to them but still reported at least one spiritual concern. "Notably, among these patients, more than half (6 of 10) reported four or more spiritual concerns" [p. 820].
This dynamic is illustrated by one young woman interviewed in the RSCC study, a 39-year old woman suffering from metastatic cancer. During the initial part of the interview, she consistently indicated that spiritual care did not apply to her and that she was not at all spiritual or religious. As the interview continued, we learned that she grew up Roman Catholic but did not attend religious services and no longer knew what she believed. But she admitted that she felt punished by God and was questioning God's power. She had also been asking for forgiveness for her sins and trying to see how God might give her strength. She agreed that she was angry with God and doubting her belief in God. [p. 821]
Such illustrations lie at the heart of the researchers' effort to "provide a thick account of patient experience" [p. 821], over and above the enumeration of themes and concerns drawn out from the RSCC data. In addition to many short quotes from patients, there are eight paragraph-length vignettes that offer a personal sense of the first-hand sharing about illness as a spiritual event.
The bibliography is fairly comprehensive, with 41 references, including some from just the past year.
Suggestions for Use of the Article for Student Discussion:
This article should be easily readable for any level of CPE students and could be used early on in a first unit to raise awareness of themes and concerns of patients facing advanced cancer and perhaps critical illness in general, but it may be especially well-suited for students with more experience who can relate the findings to a good sense of patient encounters. Discussion might begin as does the article: with the group's thought on the statement by Daniel Sulmasy that "Illness is a spiritual event" [p. 816, and see Items of Related Interest, §IV, below]. The group could also be asked at the outset which of the number of illustrative patient quotes in the article stood out upon reading, and then discussion could move into the article at one or more of those points. The authors' provision of explicit definitions for each of the five themes in the qualitative analysis should help with students' focus, even though the themes are interrelated [--see p. 820]. Regarding spiritual concerns, what does the group think of the authors' comments about the risks of overlooking the spiritual needs of patients who might show no interest in spirituality/religion [--see p. 821]? In relation to this -- and also to observations about the "foxhole effect" [p. 817] -- the group might want to muse about the challenge of recognizing the possibility of spiritual concerns in non-religious patients without devaluing a non-religious or atheist patient's worldview. Though the present article does not enumerate the 15 checklist items, the group could be supplied the items published elsewhere [--see Items of Related Interest, §II, below] and be asked how that checklist seems to cover the broad idea of spiritual concerns. Finally, students could be redirected to the opening paragraph and the quote about transcendence from Eric Cassel, ending with the remarkable sentence: "The sufferer is not isolated by pain but is brought closer to a transpersonal source of meaning and to the human community that shares those meanings" [p. 816].
Related Items of Interest:
I. The Religion and Spirituality in Cancer Care (RSCC) study was previously reported in the following articles:
Alcorn, S. R., Balboni, M. J., Prigerson, H. G., Reynolds, A., Phelps, A. C., Wright, A. A., Block, S. D., Peteet, J. R., Kachnic, L. A. and Balboni, T. A "'If God wanted me yesterday, I wouldn't be here today': religious and spiritual themes in patients' experiences of advanced cancer." Journal of Palliative Medicine 13, no. 5 (May 2010): 581-588. [(Abstract:) This study sought to inductively derive core themes of religion and/or spirituality (R/S) active in patients' experiences of advanced cancer to inform the development of spiritual care interventions in the terminally ill cancer setting. METHODS: This is a multisite, cross-sectional, mixed-methods study of randomly-selected patients with advanced cancer (n = 68). Scripted interviews assessed the role of R/S and R/S concerns encountered in the advanced cancer experience. Qualitative and quantitative data were analyzed. Theme extraction was performed with interdisciplinary input (sociology of religion, medicine, theology), utilizing grounded theory. Spearman correlations determined the degree of association between R/S themes. Predictors of R/S concerns were assessed using linear regression and analysis of variance. RESULTS: Most participants (n = 53, 78%) stated that R/S had been important to the cancer experience. In descriptions of how R/S was related to the cancer experience, five primary R/S themes emerged: coping, practices, beliefs, transformation, and community. Most interviews (75%) contained two or more R/S themes, with 45% mentioning three or more R/S themes. Multiple significant subtheme interrelationships were noted between the primary R/S themes. Most participants (85%) identified 1 or more R/S concerns, with types of R/S concerns spanning the five R/S themes. Younger, more religious, and more spiritual patients identified R/S concerns more frequently (beta = -0.11, p < 0.001; beta = 0.83, p = 0.03; and beta = 0.89, p = 0.04, respectively). CONCLUSIONS: R/S plays a variety of important and inter-related roles for most advanced cancer patients. Future research is needed to determine how spiritual care can incorporate these five themes and address R/S concerns.]
Vallurupalli, M., Lauderdale, K., Balboni, M. J., Phelps, A. C., Block, S. D., Ng, A. K., Kachnic, L. A., Vanderweele, T. J. and Balboni, T. A. "The role of spirituality and religious coping in the quality of life of patients with advanced cancer receiving palliative radiation therapy." The Journal of Supportive Oncology 10, no. 2 (March-April 2012): 81-87. [(Abstract:) OBJECTIVES: National palliative care guidelines outline spiritual care as a domain of palliative care, yet patients' religiousness and/or spirituality (R/S) are underappreciated in the palliative oncology setting. Among patients with advanced cancer receiving palliative radiation therapy (RT), this study aims to characterize patient spirituality, religiousness, and religious coping; examine the relationships of these variables to quality of life (QOL); and assess patients' perceptions of spiritual care in the cancer care setting. METHODS: This is a multisite, cross-sectional survey of 69 patients with advanced cancer (response rate = 73%) receiving palliative RT. Scripted interviews assessed patient spirituality, religiousness, religious coping, QOL (McGill QOL Questionnaire), and perceptions of the importance of attention to spiritual needs by health providers. Multivariable models assessed the relationships of patient spirituality and R/S coping to patient QOL, controlling for other significant predictors of QOL. RESULTS: Most participants (84%) indicated reliance on R/S beliefs to cope with cancer. Patient spirituality and religious coping were associated with improved QOL in multivariable analyses (beta = 10.57, P < .001 and beta = 1.28, P = .01, respectively). Most patients considered attention to spiritual concerns an important part of cancer care by physicians (87%) and nurses (85%). LIMITATIONS: Limitations include a small sample size, a cross-sectional study design, and a limited proportion of nonwhite participants (15%) from one US region. CONCLUSION: Patients receiving palliative RT rely on R/S beliefs to cope with advanced cancer. Furthermore, spirituality and religious coping are contributors to better QOL. These findings highlight the importance of spiritual care in advanced cancer care.]
Winkelman, W. D., Lauderdale, K., Balboni, M. J., Phelps, A. C., Peteet, J. R., Block, S. D., Kachnic, L. A., VanderWeele, T. J. and Balboni, T. A. "The relationship of spiritual concerns to the quality of life of advanced cancer patients: preliminary findings." Journal of Palliative Medicine 14, no. 9 (September 2011): 1022-1028. [(Abstract:) PURPOSE: Religion and/or spirituality (R/S) have increasingly been recognized as key elements in patients' experience of advanced illness. This study examines the relationship of spiritual concerns (SCs) to quality of life (QOL) in patients with advanced cancer. PATIENTS AND METHODS: Patients were recruited between March 3, 2006 and April 14, 2008 as part of a survey-based study of 69 cancer patients receiving palliative radiotherapy. Sixteen SCs were assessed, including 11 items assessing spiritual struggles (e.g., feeling abandoned by God) and 5 items assessing spiritual seeking (e.g., seeking forgiveness, thinking about what gives meaning in life). The relationship of SCs to patient QOL domains was examined using univariable and multivariable regression analysis. RESULTS: Most patients (86%) endorsed one or more SCs, with a median of 4 per patient. Younger age was associated with a greater burden of SCs (beta = -0.01, p = 0.006). Total spiritual struggles, spiritual seeking, and SCs were each associated with worse psychological QOL (beta = -1.11, p = 0.01; beta = -1.67, p < 0.05; and beta = -1.06, p < 0.001). One of the most common forms of spiritual seeking (endorsed by 54%)--thinking about what gives meaning to life--was associated with worse psychological and overall QOL (beta = -5.75, p = 0.02; beta = -12.94, p = 0.02). Most patients (86%) believed it was important for health care professionals to consider patient SCs within the medical setting. CONCLUSIONS: SCs are associated with poorer QOL among advanced cancer patients. Furthermore, most patients view attention to SCs as an important part of medical care. These findings underscore the important role of spiritual care in palliative cancer management.]
II. The items of the checklist of spiritual concerns used in the Religion and Spirituality in Cancer Care (RSCC) study may be found on p. 1025 of Winkelman, W. D., Lauderdale, K., Balboni, M. J., Phelps, A. C., Peteet, J. R., Block, S. D., Kachnic, L. A., VanderWeele, T. J. and Balboni, T. A., "The relationship of spiritual concerns to the quality of life of advanced cancer patients: preliminary findings," Journal of Palliative Medicine 14, no. 9 (September 2011): 1022-1028.
- Doubting your belief in God or in your faith [--struggle]
- Being angry with God [--struggle]
- Wondering why God has allowed this to happen [--struggle]
- Wondering whether God has abandoned me [--struggle]
- Feeling that cancer is God's way of punishing me for my sins and lack of devotion [--struggle]
- Questioning God's love for me [--struggle]
- Wondering what I did for God to punish me like this [--struggle]
- Wondering whether my church has abandoned me [--struggle]
- I've been thinking that the devil made this happen [--struggle]
- Questioning the power of God [--struggle]
- Seeking a closer connection with God or with your faith [--seeking]
- Finding meaning in the experience of your cancer [--seeking]
- Thinking about forgiveness (being forgiven or forgiving others) [--seeking]
- Thinking about what gives meaning to life [--seeking]
Note: In the Winkelman, et al. article, this instrument is described as having 16 items, whereas in our featured article by Balboni & Balboni it is referred to as "a 15-item checklist" [p. 820]. The discrepancy is merely the function of whether the "Other" item is counted separately for the two domains of Spiritual Struggle and Spiritual Seeking or just once covering both domains.
III. Our authors refer to "Pargament's negative religious coping items" [p. 820]. For more on this, see Pargament, K., Feuille, M. and Burdzy, D., "The Brief RCOPE: current psychometric status of a short measure of religious coping," Religions 2, no. 1 (2011): 51-76; which is an Open Access article.
IV. For more on the idea of "illness as a spiritual event," Tracy Balboni has also written on 9/25/18 a reflection via a Harvard blog for the Initiative on Health, Religion, and Spirituality: "Integrating Spiritual Care into Palliative Medicine: A Personal Perspective."
V. Our ACPE Research site has on numerous occasions featured the work of Tracy Balboni, MD, MPH, and/or Michael Balboni, PhD, ThM, MDiv. They are both prolific writers -- and for full lists of their works, see the Harvard Catalyst pages for TAB and MJB -- but below is a selection from the over-two-dozen articles (commentary as well as research) that they have written together on the same team, extending beyond the particular focus of our featured article this month.
Balboni, M. J., Babar, A., Dillinger, J., Phelps, A. C., George, E., Block, S. D., Kachnic, L., Hunt, J., Peteet, J., Prigerson, H. G., VanderWeele, T. J. and Balboni, T. A. "'It depends': viewpoints of patients, physicians, and nurses on patient-practitioner prayer in the setting of advanced cancer." Journal of Pain and Symptom Management 41, no. 5 (May 2011): 836-847. [(Abstract:) CONTEXT: Although prayer potentially serves as an important practice in offering religious/spiritual support, its role in the clinical setting remains disputed. Few data exist to guide the role of patient-practitioner prayer in the setting of advanced illness. OBJECTIVES: To inform the role of prayer in the setting of life-threatening illness, this study used mixed quantitative-qualitative methods to describe the viewpoints expressed by patients with advanced cancer, oncology nurses, and oncology physicians concerning the appropriateness of clinician prayer. METHODS: This is a cross-sectional, multisite, mixed-methods study of advanced cancer patients (n=70), oncology physicians (n=206), and oncology nurses (n=115). Semistructured interviews were used to assess respondents' attitudes toward the appropriate role of prayer in the context of advanced cancer. Theme extraction was performed based on interdisciplinary input using grounded theory. RESULTS: Most advanced cancer patients (71%), nurses (83%), and physicians (65%) reported that patient-initiated patient-practitioner prayer was at least occasionally appropriate. Furthermore, clinician prayer was viewed as at least occasionally appropriate by the majority of patients (64%), nurses (76%), and physicians (59%). Of those patients who could envision themselves asking their physician or nurse for prayer (61%), 86% would find this form of prayer spiritually supportive. Most patients (80%) viewed practitioner-initiated prayer as spiritually supportive. Open-ended responses regarding the appropriateness of patient-practitioner prayer in the advanced cancer setting revealed six themes shaping respondents' viewpoints: necessary conditions for prayer, potential benefits of prayer, critical attitudes toward prayer, positive attitudes toward prayer, potential negative consequences of prayer, and prayer alternatives. CONCLUSION: Most patients and practitioners view patient-practitioner prayer as at least occasionally appropriate in the advanced cancer setting, and most patients view prayer as spiritually supportive. However, the appropriateness of patient-practitioner prayer is case specific, requiring consideration of multiple factors.]
Balboni, M. J., Sullivan, A., Amobi, A., Phelps, A. C., Gorman, D. P., Zollfrank, A., Peteet, J. R., Prigerson, H. G., Vanderweele, T. J. and Balboni, T. A."Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training." Journal of Clinical Oncology 31, no. 4 (February 1, 2013): 461-467. [(Abstract:) PURPOSE: To determine factors contributing to the infrequent provision of spiritual care (SC) by nurses and physicians caring for patients at the end of life (EOL). PATIENTS AND METHODS: This is a survey-based, multisite study conducted from March 2006 through January 2009. All eligible patients with advanced cancer receiving palliative radiation therapy and oncology physician and nurses at four Boston academic centers were approached for study participation; 75 patients (response rate = 73%) and 339 nurses and physicians (response rate = 63%) participated. The survey assessed practical and operational dimensions of SC, including eight SC examples. Outcomes assessed five factors hypothesized to contribute to SC infrequency. RESULTS: Most patients with advanced cancer had never received any form of spiritual care from their oncology nurses or physicians (87% and 94%, respectively; P for difference = .043). Majorities of patients indicated that SC is an important component of cancer care from nurses and physicians (86% and 87%, respectively; P = .1). Most nurses and physicians thought that SC should at least occasionally be provided (87% and 80%, respectively; P = .16). Majorities of patients, nurses, and physicians endorsed the appropriateness of eight examples of SC (averages, 78%, 93%, and 87%, respectively; P = .01). In adjusted analyses, the strongest predictor of SC provision by nurses and physicians was reception of SC training (odds ratio [OR] = 11.20, 95% CI, 1.24 to 101; and OR = 7.22, 95% CI, 1.91 to 27.30, respectively). Most nurses and physicians had not received SC training (88% and 86%, respectively; P = .83). CONCLUSION: Patients, nurses, and physicians view SC as an important, appropriate, and beneficial component of EOL care. SC infrequency may be primarily due to lack of training, suggesting that SC training is critical to meeting national EOL care guidelines.]
Balboni, M. J., Sullivan, A., Smith, P. T., Zaidi. D., Mitchell, C., Tulsky, J. A., Sulmasy, D. P., VanderWeele, T. J. and Balboni, T. A. "The views of clergy regarding ethical controversies in care at the end of life." Journal of Pain and Symptom Management 55, no. 1 (January 2018): 65-74.e9. [(Abstract:) CONTEXT: Although religion often informs ethical judgments, little is known about the views of American clergy regarding controversial end-of-life ethical issues including allowing to die and physician aid in dying or physician-assisted suicide (PAD/PAS). OBJECTIVE: To describe the views of U.S. clergy concerning allowing to die and PAD/PAS. METHODS: A survey was mailed to 1665 nationally representative clergy between 8/2014 to 3/2015 (60% response rate). Outcome variables included beliefs about whether the terminally ill should ever be "allowed to die" and moral/legal opinions concerning PAD/PAS. RESULTS: Most U.S. clergy are Christian (98%). Clergy agreed that there are circumstances in which the terminally ill should be "allowed to die" (80%). A minority agreed that PAD/PAS was morally (28%) or legally (22%) acceptable. Mainline/Liberal Christian clergy were more likely to approve of the morality (56%) and legality (47%) of PAD/PAS, in contrast to all other clergy groups (6%-17%). Greater end-of-life medical knowledge was associated with moral disapproval of PAD/PAS (adjusted odds ratio [AOR], 1.51; 95% CI, 1.04-2.19, P = 0.03). Those reporting distrust in health care were less likely to oppose legalization of PAD/PAS (AOR 0.93; 95% CI, 0.87-0.99, P < 0.02). Religious beliefs associated with disapproval of PAD/PAS included "life's value is not tied to the patient's quality of life" (AOR 2.12; 95% CI, 0.1.49-3.03, P < 0.001) and "only God numbers our days" (AOR 2.60; 95% CI, 1.77-3.82, P < 0.001). CONCLUSION: Most U.S. clergy approve of "allowing to die" but reject the morality or legalization of PAD/PAS. Respectful discussion in public discourse should consider rather than ignore underlying religious reasons informing end-of-life controversies.]
Balboni, T., Balboni, M., Paulk, M. E., Phelps, A., Wright, A., Peteet, J., Block, S., Lathan, C., Vanderweele, T. and Prigerson, H. "Support of cancer patients' spiritual needs and associations with medical care costs at the end of life." Cancer 117, no. 23 (December 1, 2011): 5383-5391. [NOTE: This was our June 2011 Article-of-the-Month.] [(Abstract:) BACKGROUND: Although spiritual care is associated with less aggressive medical care at the end of life (EOL), it remains infrequent. It is unclear if the omission of spiritual care impacts EOL costs. METHODS: A prospective, multisite study of 339 advanced cancer patients accrued subjects from September 2002 to August 2007 from an outpatient setting and followed them until death. Spiritual care was measured by patients' reports that the health care team supported their religious/spiritual needs. EOL costs in the last week were compared among patients reporting that their spiritual needs were inadequately supported versus those who reported that their needs were well supported. Analyses were adjusted for confounders (eg, EOL discussions). RESULTS: Patients reporting that their religious/spiritual needs were inadequately supported by clinic staff were less likely to receive a week or more of hospice (54% vs 72.8%; P = .01) and more likely to die in an intensive care unit (ICU) (5.1% vs 1.0%, P = .03). Among minorities and high religious coping patients, those reporting poorly supported religious/spiritual needs received more ICU care (11.3% vs 1.2%, P = .03 and 13.1% vs 1.6%, P = .02, respectively), received less hospice (43.% vs 75.3% >=1 week of hospice, P = .01 and 45.3% vs 73.1%, P = .007, respectively), and had increased ICU deaths (11.2% vs 1.2%, P = .03 and 7.7% vs 0.6%, P = .009, respectively). EOL costs were higher when patients reported that their spiritual needs were inadequately supported ($4947 vs $2833, P = .03), particularly among minorities ($6533 vs $2276, P = .02) and high religious copers ($6344 vs $2431, P = .005). CONCLUSIONS: Cancer patients reporting that their spiritual needs are not well supported by the health care team have higher EOL costs, particularly among minorities and high religious coping patients.]
Balboni, T. A., Balboni, M. J. and Fitchett, G."Religion, spirituality, and the intensive care unit: the sound of silence." JAMA Internal Medicine 175, no. 10 (October 2015): 1669-1670. [This is a brief, invited commentary on Ernecoff, N. C., Curlin, F. A., Buddadhumaruk, P. and White, D. B., "Health Care Professionals' Responses to Religious or Spiritual Statements by Surrogate Decision Makers During Goals-of-Care Discussions," JAMA Internal Medicine 175, no. 10 (October 2015): 1662-1669; emphasizing the need for health care providers to give room in family meetings for spiritual concerns.]
Epstein-Peterson, Z. D., Sullivan, A. J., Enzinger, A. C., Trevino, K. M., Zollfrank, A. A., Balboni, M. J., VanderWeele, T. J. and Balboni, T. A. "Examining forms of spiritual care provided in the advanced cancer setting." American Journal of Hospice and Palliative Medicine 32, no. 7 (November 2015): 750-757. [(Abstract:) Spiritual care (SC) is important to the care of seriously ill patients. Few studies have examined types of SC provided and their perceived impact. This study surveyed patients with advanced cancer (N = 75, response rate [RR] = 73%) and oncology nurses and physicians (N = 339, RR = 63%). Frequency and perceived impact of 8 SC types were assessed. Spiritual care is infrequently provided, with encouraging or affirming beliefs the most common type (20%). Spiritual history taking and chaplaincy referrals comprised 10% and 16%, respectively. Most patients viewed each SC type positively, and SC training predicted provision of many SC types. In conclusion, SC is infrequent, and core elements of SC-spiritual history taking and chaplaincy referrals-represent a minority of SC. Spiritual care training predicts provision of SC, indicting its importance to advancing SC in the clinical setting.]
Koss, S. E., Weissman, R., Chow, V., Smith, P. T., Slack, B., Voytenko, V., Balboni, T. A. and Balboni, M. J. "Training community clergy in serious illness: balancing faith and medicine." Journal of Religion and Health (2018): published online ahead of print, June 6, 2018. [(Abstract:) Community-based clergy are highly engaged in helping seriously ill patients address spiritual concerns at the end of life (EOL). While they desire EOL training, no data exist in guiding how to conceptualize a clergy-training program. The objective of this study was used to identify best practices in an EOL training program for community clergy. As part of the National Clergy Project on End-of-Life Care, the project conducted key informant interviews and focus groups with active clergy in five US states (California, Illinois, Massachusetts, New York, and Texas). A diverse purposive sample of 35 active clergy representing pre-identified racial, educational, theological, and denominational categories hypothesized to be associated with more intensive utilization of medical care at the EOL. We assessed suggested curriculum structure and content for clergy EOL training through interviews and focus groups for the purpose of qualitative analysis. Thematic analysis identified key themes around curriculum structure, curriculum content, and issues of tension. Curriculum structure included ideas for targeting clergy as well as lay congregational leaders and found that clergy were open to combining resources from both religious and health-based institutions. Curriculum content included clergy desires for educational topics such as increasing their medical literacy and reviewing pastoral counseling approaches. Finally, clergy identified challenging barriers to EOL training needing to be openly discussed, including difficulties in collaborating with medical teams, surrounding issues of trust, the role of miracles, and caution of prognostication. Future EOL training is desired and needed for community-based clergy. In partnering together, religious-medical training programs should consider curricula sensitive toward structure, desired content, and perceived clergy tensions.]
Maciejewski, P. K., Phelps, A. C., Kacel, E. L., Balboni, T. A., Balboni, M., Wright, A. A., Pirl, W. and Prigerson, H. G. "Religious coping and behavioral disengagement: opposing influences on advance care planning and receipt of intensive care near death." Psycho-Oncology 21, no. 7 (July 2012): 714-723. [(Abstract:) OBJECTIVE: This study examines the relationships between methods of coping with advanced cancer, completion of advance care directives, and receipt of intensive, life-prolonging care near death. METHODS: The analysis is based on a sample of 345 patients interviewed between January 1, 2003, and August 31, 2007, and followed until death as part of the Coping with Cancer Study, an NCI/NIMH-funded, multi-site, prospective, longitudinal, cohort study of patients with advanced cancer. The Brief COPE was used to assess active coping, use of emotional-support, and behavioral disengagement. The Brief RCOPE was used to assess positive and negative religious coping. The main outcome was intensive, life-prolonging care near death, defined as receipt of ventilation or resuscitation in the last week of life. RESULTS: Positive religious coping was associated with lower rates of having a living will (AOR = 0.39, p = 0.003) and predicted higher rates of intensive, life-prolonging care near death (AOR, 5.43; p<0.001), adjusting for other coping methods and potential socio-demographic and health status confounds. Behavioral disengagement was associated with higher rates of DNR order completion (AOR, 2.78; p = 0.003) and predicted lower rates of intensive life-prolonging care near death (AOR, 0.20; p = 0.036). Not having a living will partially mediate the influence of positive religious coping on receipt of intensive, life-prolonging care near death. CONCLUSION: Positive religious coping and behavioral disengagement are important determinants of completion of advance care directives and receipt of intensive, life-prolonging care near death.]
Trevino, K. M., Balboni, M., Zollfrank, A., Balboni, T. and Prigerson, H. G. "Negative religious coping as a correlate of suicidal ideation in patients with advanced cancer." Psycho-Oncology 23, no. 8 (August 2014): 936-945. [NOTE: This was our October 2014 Article-of-the-Month.] [(Abstract:) OBJECTIVE: The purpose of this study is to examine the relationship between negative religious coping (NRC) and suicidal ideation in patients with advanced cancer, controlling for demographic and disease characteristics and risk and protective factors for suicidal ideation. METHODS: Adult patients with advanced cancer (life expectancy <=6months) were recruited from seven medical centers in the northeastern and southwestern USA (n=603). Trained raters verbally administered the examined measures to patients upon study entry. Multivariable logistic regression analyses regressed suicidal ideation on NRC controlling for significant demographic, disease, risk, and protective factors. RESULTS: Negative religious coping was associated with an increased risk for suicidal ideation (OR, 2.65 [95% CI, 1.22, 5.74], p=0.01) after controlling for demographic and disease characteristics, mental and physical health, self-efficacy, secular coping, social support, spiritual care received, global religiousness and spirituality, and positive religious coping. CONCLUSIONS: Negative religious coping is a robust correlate of suicidal ideation. Assessment of NRC in patients with advanced cancer may identify patients experiencing spiritual distress and those at risk for suicidal ideation. Confirmation of these results in future studies would suggest the need for interventions targeting the reduction of NRC to reduce suicidal ideation among advanced cancer patients.]