March 2021 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
Cipriano-Steffens, T., Cursio, J. F., Hlubocky, F., Sumner, M., Garnigan-Peters, D., Powell, J., Arndt, N., Phillips, L., Lassiter, R. H.*, Gilliam, M., Petty, L. E., Pastor, R. S. O.*, Malec, M., Fitchett, G. and Polite, B. "Improving end of life cancer outcomes through development and implementation of a Spiritual Care Advocate program." American Journal of Hospice and Palliative Medicine (2021): published online ahead of print, 3/5/21. [*NOTE: Co-author Rev. Herbert Lassiter, of Christ Universal Temple in Chicago, is incorrectly listed in the National Library of Medicine database as Lassiter, R. H.; and Rev. Scott Onque, Pastor of the Saint Luke Missionary Baptist Church in Chicago, is confusingly listed in the printed article as Rev. Scott Onque Pastor, which has apparently led to his name being incorrectly listed in the National Library of Medicine database as Pastor, R. S. O.]
[Editor's Note: Because this article is available ahead of print, no final page numbers can be cited. References are to manuscript [MS] page numbers.]
SUMMARY and COMMENT: This month's study examines a healthcare & religious community partnership in Chicago, aimed at increasing patients' sense of spiritual support at the end of life and at affecting healthcare outcomes. It builds upon the research team's previous work that explored receptivity -- especially by Black patients -- to spiritual support services and what such services might optimally look like [--see related Items of Interest, §I, below]. The Spiritual Care Advocate initiative involved a chaplain in a key role, and the whole project shows promise for replication. Co-authors Marsha Sumner and George Fitchett are professional hospital-based chaplains.
The authors observe that while "[c]haplains are universally looked to as the spiritual care specialists on healthcare teams," there is a lack of sufficient staffing of hospital chaplains, and "only 1 in 3 palliative care teams report staff chaplains on the team" [MS p. 2]. Therefore, "[t]he Spiritual Care Advocate (SCA) program was developed to increase the attention to spiritual concerns of patients with advanced cancer, especially Black patients" [MS p. 2].
Two Spiritual Care Advocates were recruited from local churches to be part of this collaborative effort. Each "received training and support in the basics of cancer care, end-of-life and palliative care, and chaplaincy and distress communication," including training and mentorship by the Head Chaplain and Manager of the Spiritual Care Department at University of Chicago Medicine that focused on "recognize[ing] those patients with more significant spiritual struggle for whom chaplain support was recommended" [MS p. 3]. That chaplain also provided the participants "on-going support in the form of assessments and debriefings, which took place bi-weekly and then, on an as-needed basis" [MS p. 3]. "The SCA's met with about twenty patients a week (most patients receive treatment bi-weekly), or ten patients per SCA, and spent about 20-30 minutes per patient visit" [MS p. 3].
We hypothesized that by improving perceived spiritual support between the healthcare team and patients with strong baseline R/S beliefs, you will improve both psychosocial outcomes (quality of life, spiritual wellbeing), and EOL outcomes (nonreceipt of inappropriately aggressive end of life care, advanced directives, palliative care, hospice referral). [MS p. 2]
Seventy-two "newly diagnosed metastatic (stage IV) cancer patients with life expectancies of less than 12 months" were approached during their chemotherapy treatments, and 52 (72%) consented for the study. They subsequently completed a baseline survey and then a second survey 3-4 months later, primarily during their chemotherapy appointments. The baseline battery consisted of a seven-item questionnaire of religious life, plus a measure of God Locus of Health Control. The follow-up survey addressed spiritual support, Quality of Life (in the context of palliative care and cancer), and evaluation of the SCA services. (The surveys are available as supplementary material linked to the article on the journal website.) "The final sample consisted of 42 patients (58% of those approached) who completed baseline surveys and had known survival status" [MS p. 3]. Twenty-four (57% of the final sample) completed the follow-up survey. The enrollment/data collection period ran from March 2016 to December 2018 [--not stipulated in the article but stated in direct communication from the corresponding author].
Among the findings:
- Of the total sample of 42 patients, 77% said that their religious/spiritual beliefs were either "very important" or "moderately important"; with only one patient (2%) saying they were "not important." [See Table 1, MS p. 5]
- "A majority of our participants (67%) said they received no help from clergy during their illness." [MS p. 6]
- "For the entire population, 76% were interested in receiving spiritual support from their doctor or health care team with no difference between those who did or did not receive aggressive EOL care. [MS p. 6]
- "In accordance with the study hypothesis, ...participants reported increased spiritual support from the medical community from 27% at baseline to 63% (p 1⁄4 0.005) post the SCA intervention." [MS p. 7]
- "There were...moderate increases [regarding spiritual support] across the patient and religious community (55% to 70%...), and support from the family (79% to 92%...)...." [MS p. 7]
- "[C]hanges in perceived support were associated with EOL care for those who had died and had completed both baseline and second survey. Change in perceived spiritual support from the health care team increased from pre to post in 47% of those who received non-aggressive EOL care and by 40% in those who received aggressive EOL care.... These findings are consistent with the study's primary hypothesis." [MS p. 7]
- "Spiritual support from the religious community also increased in 47% of those who received non-aggressive EOL care but in none of the individuals who received aggressive EOL care.... The change in perceived spiritual support from the family found no difference in those who received aggressive and non-aggressive EOL care...." [MS p. 7]
- Regarding evaluation of the SCA program, 67% agreed "quite a bit" in response to the question, "To what extent did the SCA provide you support in dealing with your cancer and cancer treatment?" And, 59% responded with "a lot better than expected" to the item, "Compared to what you expected, how would you rate your experience[?]" [MS p. 7 and Supplemental Material]
The authors sum up:
The SCA model has the potential to significantly inform current research as well as clinical practice paradigms pertaining to the provision of spiritual care to advanced cancer patients with a particular relevance to racial and ethnic minorities who are disproportionately more likely to receive aggressive EOL care.
This study demonstrated that the SCA model significantly improved the perceived spiritual support between the healthcare team and patients with strong baseline R/S beliefs. While limited by the small sample size, the SCA model was associated with an improvement in EOL patients' quality of life and spiritual wellbeing, and significantly improved EOL outcomes, including non-receipt of inappropriately aggressive end of life care.... [MS p. 8]
The research focuses on patients with strong baseline religious/spiritual beliefs and adds to evidence "expos[ing] an unmet clinical need," attention to which is strategic to closing a "care gap" [MS p. 8]. Religious patients interested in spiritual support would seem to be a relatively easy fit with a program involving community resources, but the SCA project appears to be much more than a mere expansion of spiritual services to patients. It recognizes how a cooperative effort with local congregations might have direct effects on patients' experiences of clinical care and could influence clinical outcomes. For healthcare settings with already developed pastoral care departments, the idea here suggests -- to this reader -- productive synergy between chaplains and a SCA-type of community team that goes beyond the common model of community volunteers or a visiting clergy program. It makes this reader wonder about how a SCA-type program could not only expand resources for patients but create a new level of integration of community support with clinical care planning, especially in circumstances of grave illness.
Study limitations call for further research with a larger sample size, with a variety of faith traditions, and with close consideration of patients who might not desire such support [--see MS p. 8]. A clearer line between findings about support and palliative care decisions could also be drawn. This should pique the interest of many chaplains -- and institutions on the whole -- hoping both to develop greater community connections and to move further into spirituality & health research.
Supplemental material, available separately from the journal, includes a brochure publicizing/explaining the initiative in addition to the patient questionnaires.
Suggestions for Use of the Article for Student Discussion:
This month's article should be engaging for a variety of chaplaincy groups, but it may be of special appeal to those groups with strong community ties: either with community-based CPE programs or with extern programs that often draw from working clergy. The data tables do not require statistical training to understand, and the supplemental material offers a very practical sense of the research interface with the patients. Discussion could begin with how the described SCA initiative may seem similar to and/or different from the ways that community clergy and congregations are used to being involved with healthcare facilities. Are there any reservations about the model? What do the students see as the importance of such an initiative especially for patients from underserved/minority populations? The group might look especially at Table 2 [MS p. 6], regarding Religious/Spiritual Support. For local community members of the group, what do they think of how they might affect patients' perception of the support of the clinical team and how they may affect clinical outcomes? And, for non-community members, what has been their beliefs or experiences of the impact of local clergy/congregational involvement? The context here is palliative care, but since many illness circumstances that not long ago would have been seen as "terminal" are now thought of and treated as serious but chronic, how might a palliative care initiative like the SCA possibly be envisioned to expand to wider and wider circles of patients? Some groups may want to look particularly at the questionnaires the patients answered [--see Supplemental materials]. The source measures are well described [MS pp. 3 and 5], in which case the items from the God Locus of Health Control (GLHC) Survey may be especially a point of discussion. Does this article raise the prospects of some new community initiative with the group members or with the CPE center?
Related Items of Interest:
I. The two main studies from which the present one grew are as follows. [Note: The article titled, "Let Go and Let God..." is listed in the bibliography of our featured article as having been published in 2019, but while it was published online in November 8, 2019, it appeared in print in the October 2020 issue of the journal.]
Cipriano-Steffens, T. M., Carilli, T., Hlubocky, F., Quinn, M., Fitchett, G. and Polite, B. "'Let go, let God': a qualitative study exploring cancer patients' spirituality and its place in the medical setting." Journal of Religion and Health 59, no. 5 (October 2020): 2341-2363. [(Abstract:) This study explored the role of God and spirituality in cancer patients to gain deeper insight into how patients use their spirituality to cope during illness, including how they see the medical team meeting their spiritual needs. From our work, some naturally emerging themes included Finding God in Cancer and Healing, Spiritual Support Desired from Medical Community, Doctor as "Gift from God"?, and Communication and the Power of Talk. Cancer patients not only acknowledged a spiritual need, but a desire for it to be addressed by their medical team as part of their treatment.] [This article was featured as our December 2019 Article-of-the-Month.]
Polite, B. N., Cipriano-Steffens, T. M., Hlubocky, F. J., Jean-Pierre, P., Cheng, Y., Brewer, K. C., Rauscher, G. H. and Fitchett, G. A.
"Association of externalizing religious and spiritual beliefs on stage of colon cancer diagnosis among Black and White multicenter urban patient populations." Cancer 124, no. 12 (June 15, 2018): 2578-2587. [(Abstract:) BACKGROUND: This study explores whether externalizing religious and spiritual beliefs is associated with advanced-stage colon cancer at initial oncology presentation and whether this association is stronger for blacks than for whites. METHODS: Patients who had newly diagnosed, invasive colon cancer were recruited at 9 sites in the Chicago metropolitan area. Eligible patients were non-Hispanic white or black, ages 30 to 79 years, and diagnosed with a primary invasive colon cancer. Patients were interviewed on prior screening and diagnosis. Social and attitudinal constructs were measured, including the God Locus of Health Control (GLHC) and Religious Problem Solving. The final response rate was 52% and included 407 patients. RESULTS: The median age was 59 years (range, 30-79 years), and 51% of participants were black. Cancer stage was available for 389 (96%) patients and was divided between late stage (stages III-IV; 60%) and early stage (stages I-II; 40%). Multivariate analysis indicated that patients in the highest tertile of scores on the GLHC were more likely have an advanced stage of disease at presentation (odds ratio, 2.14; 95% confidence interval, 1.00-4.59; P = .05) compared with those in the lowest tertile. No significant interaction was identified between race and GLHC scores for stage at presentation (P = .78). CONCLUSIONS: In a large sample of black and white individuals across diverse health care systems, higher scores on the GLHC predicted late disease stage at presentation. Although blacks had significantly higher GLHC scores, race was not associated with stage at presentation, nor was the association between GLHC and stage limited to blacks. Further work is needed to better understand this association and to develop interventions to better connect the religious and health care spheres.]
II. Readers may be interested in a 2015 workshop presentation by co-authors Polite, Fitchett, Hlubocky, and Cipriano, available online from healthcarechaplaincy.org on "The Role of Deferring to God's Control in Disparities in Colon Cancer: Evidence and Proposed Solutions." The final slides lay out the vision of the Spiritual Care Advocate model, including a job advertisement and a curriculum outline.
III. Regarding the subject of community clergy education around end-of-life care, the following articles should give a good foothold in the literature.
Goodhead, A., Speck, P. and Selman, L.
"'I think you just learnt as you went along' -- community clergy's experiences of and attitudes towards caring for dying people: a pilot study." Palliative Medicine 30, no. 7 (July 2016): 674-683. [(Abstract:) BACKGROUND: Spiritual distress is a factor associated with poor outcomes at the end of life. Timely interventions, assessing and meeting spiritual distress, among patients are contained within nationally agreed guidance. Community clergy are well placed to work alongside healthcare professionals and chaplains to meet spiritual needs. METHODS: Qualitative interviews among Christian clergy in two South East London boroughs and a self-completed Death Anxiety Questionnaire. RESULTS: Fourteen clergy were interviewed from six Christian denominations. Participants described their experiences of ordination training and how helpful this had been for their work among Christian communities. Respondents were invited to discuss their knowledge of and involvement with palliative care services. Each interviewee also accounted for their understanding of pastoral care and spiritual care and considered whether any differences existed between these terms and, if so, what they were. Overall, clergy lacked any detailed formal training and had little experience of working with or relating to palliative care providers. Recommendations are made to improve educational opportunities and working relationships. CONCLUSIONS: Creating opportunities for clergy and palliative care staff to meet and undertake shared training will enhance the quality and level of care for people dying at home who wish to receive spiritual support. Enabling clergy to develop links with local palliative care centres will enhance confidence for both clergy and staff.]
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 57, no. 4 (August 2018): 1413-1427. [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.]
LeBaron, V. T., Smith, P. T., Quinones, R., Nibecker, C., Sanders, J. J., Timms, R., Shields, A. E., Balboni, T. A. and Balboni, M J. "How community clergy provide spiritual care: toward a conceptual framework for clergy end-of-life education." Journal of Pain and Symptom Management 51, no. 4 (April 2016): 673-681. [(Abstract:) CONTEXT: Community-based clergy are highly engaged in helping terminally ill patients address spiritual concerns at the end of life (EOL). Despite playing a central role in EOL care, clergy report feeling ill-equipped to spiritually support patients in this context. Significant gaps exist in understanding how clergy beliefs and practices influence EOL care. OBJECTIVES: The objective of this study was to propose a conceptual framework to guide EOL educational programming for community-based clergy. METHODS: This was a qualitative, descriptive study. Clergy from varying spiritual backgrounds, geographical locations in the U.S., and race/ethnicities were recruited and asked about optimal spiritual care provided to patients at the EOL. Interviews were audio taped, transcribed, and analyzed following principles of grounded theory. A final set of themes and subthemes were identified through an iterative process of constant comparison. Participants also completed a survey regarding experiences ministering to the terminally ill. RESULTS: A total of 35 clergy participated in 14 individual interviews and two focus groups. Primary themes included Patient Struggles at EOL and Clergy Professional Identity in Ministering to the Terminally Ill. Patient Struggles at EOL focused on existential questions, practical concerns, and difficult emotions. Clergy Professional Identity in Ministering to the Terminally Ill was characterized by descriptions of Who Clergy Are ("Being"), What Clergy Do ("Doing"), and What Clergy Believe ("Believing"). "Being" was reflected primarily by manifestations of presence; "Doing" by subthemes of religious activities, spiritual support, meeting practical needs, and mistakes to avoid; "Believing" by subthemes of having a relationship with God, nurturing virtues, and eternal life. Survey results were congruent with interview and focus group findings. CONCLUSION: A conceptual framework informed by clergy perspectives of optimal spiritual care can guide EOL educational programming for clergy.]
IV. On the general issue of racial differences in health care provision/utilization, our article's bibliography cites older studies. The following very recent research may be useful addenda to the reference list:
Mullins, M. A., Ruterbusch, J. J., Clarke. P., Uppal. S., Wallner, L. P. and Cote, M. L. "Trends and racial disparities in aggressive end-of-life care for a national sample of women with ovarian cancer." Cancer online ahead of print, 2/25/21. [(Abstract:) BACKGROUND: The clinical landscape has moved toward less aggressive end-of-life care for women with ovarian cancer. However, whether there has been a decline in the use of aggressive end-of-life services is unknown. The authors evaluated current national trends and racial disparities in end-of-life care among women with ovarian cancer using the Surveillance, Epidemiology, and End Results-Medicare-linked data set. METHODS: In total, 7756 Medicare beneficiaries aged >66 years with ovarian cancer who died between 2007 and 2016 were identified. The authors examined trends and racial disparities in late hospice or no hospice use, >1 emergency department (ED) visit, intensive care unit admission, >1 hospitalization, terminal hospitalization, chemotherapy, and invasive and/or life-extending procedures using multivariable logistic regression. RESULTS: The median hospice length of stay did not change over time; however, women were increasingly admitted to the intensive care unit and had multiple ED visits in the last month of life (P < .001). Not enrolling in hospice at the end of life and terminal hospitalizations decreased over time (P < .001). Non-White women were more likely to receive aggressive end-of-life care, particularly for hospital-related utilization and life-extending procedures, whereas non-Hispanic Black women were more likely to have >1 ED visit (odds ratio, 2.04; 95% CI, 1.57-2.64) or life-extending procedures (odds ratio, 1.89; 95% CI, 1.45-2.48) compared with non-Hispanic White women. CONCLUSIONS: Despite clinical guidelines and increasing emphasis on reducing aggressive end-of-life care, the use of aggressive end-of-life care for women with ovarian cancer persists, and care is most aggressive for non-White women.]
Perry, L. M., Walsh, L. E., Horswell, R., Miele, L., Chu, S., Melancon, B., Lefante, J., Blais, C. M., Rogers, J. L. and Hoerger, M. "Racial disparities in end-of-life care between black and white adults with metastatic cancer." Journal of Pain and Symptom Management 61, no. 2 (February 2021): 342-349.e1. [(Abstract:) CONTEXT: The comfort of patients with cancer near the end of life (EOL) is often undermined by unnecessary and burdensome treatments. There is a need for more research examining racial disparities in EOL care, especially in regions with a history of racial discrimination. OBJECTIVES: To examine whether black adults received more burdensome EOL care than white adults in a population-based data set of cancer decedents in Louisiana, a state with a history of slavery and long-standing racial disparities. METHODS: This was a retrospective analysis of EOL care from the Research Action for Health Network (REACHnet), a regional Patient-Centered Outcomes Research Institute-funded database. The sample consisted of 875 white and 415 black patients with metastatic cancer who died in Louisiana from 2011 to 2017. We used logistic regression to examine whether race was associated with five indicators of burdensome care in the last 30 days of life: chemotherapy use, inpatient hospitalization, intensive care unit admission, emergency department (ED) admission, and mechanical ventilation. RESULTS: Most patients (85.0%) received at least one indicator of burdensome care: hospitalization (76.5%), intensive care unit admission (44.1%), chemotherapy (29.1%), mechanical ventilation (23.0%), and ED admission (18.3%). Odds ratios (ORs) indicated that black individuals were more likely than white individuals to be hospitalized (OR = 1.66; 95% CI = 1.21-2.28; P = 0.002) or admitted to the ED (OR = 1.57; 95% CI = 1.16-2.13; P = 0.004) during their last month of life. CONCLUSION: Findings have implications for informing health care decision making near the EOL for patients, families, and clinicians, especially in regions with a history of racial discrimination and disparities.]
V. While being quite different than the Spiritual Care Advocate initiative, the following study may be interesting to readers, especially as it involves "church-based lay companions."
Johnson, J., Hayden, T., Taylor, L. A., Gilbert, A., Jones, C. H. Jr., Mitchell, M. P. H. and Curtis, B. "Engaging the African American Church to improve communication about palliative care and hospice: lessons from a multilevel approach." Journal of Palliative Care 34, no. 3 (July 2019): 168-174. [(Abstract:) BACKGROUND: As the spiritual family for many African Americans, the church presents an opportunity to improve communication about palliative care and hospice (PCH). However, sustainable change in church-based, practices related to PCH requires a comprehensive, multilevel approach. OBJECTIVES: Our primary goal was to encourage churches to embrace palliative care and hospice as acceptable alternatives for end-of-life care by creating venues to improve communications about PCH. This paper compares our experience in 5 churches, revealing lessons learned and the challenges of engaging, implementing, and maintaining a multilevel approach in the churches, and our strategies in response to those challenges. DESIGN: Descriptive study Settings/Subjects: We partnered with 5 African American Churches in the Philadelphia Region. We targeted pastors, other church leaders, and congregants. METHODS: We created 1) a leadership-education program, 2) an intensive training program for church-based lay companions (health visitors), and 3) messages and materials to increase knowledge and influence attitudes about PCH. RESULTS: We impacted church structures and policies as shown by: integration of the project activities into existing church structures, new church-based programs dedicated to training lay companions and church leaders, new roles for church members (church liaisons) dedicated to this project, and new materials and messages focusing on PCH for the general congregation. CONCLUSIONS: We demonstrated the feasibility of engaging the African American church in a comprehensive, multilevel process designed to improve communication about palliative care and hospice (PCH). Our success demonstrates the potential of the African American church as a community resource for lay education about PCH.]