March 2017 Article of the Month
This month's article selection is highlighted by John Ehman,
University of Pennsylvania Medical Center-Penn Presbyterian, Philadelphia PA.
Jeuland, J., Fitchett, G., Schulman-Green, D. and Kapo, J. "Chaplains working in palliative care: who they are and what they do." Journal of Palliative Medicine (2017): published online by the journal, ahead of print.
[Editor's Note: Because this article is available ahead of print, no final page numbers can be cited. Quotations noted below are referenced by manuscript [MS] page numbers.]
SUMMARY and COMMENT: This is the "first profile of chaplains working in PC [Palliative Care] across the United States…, describe[ing] their involvement in PC, their daily responsibilities, their integration in PC programs, and the content of their visits" [MS p. 4]. The analysis also describes "how chaplains' level of involvement in PC affects their responsibilities, integration, and visit content" [MS p. 2, italics added]. Such descriptive research is vital to development of the profession and, in this case, suggests at least one practical step that potentially could improve the care of patients.
Members of the Association of Professional Chaplains (APC), the National Association of Catholic Chaplains (NACC), the National Association of Veterans Affairs Chaplains (NAVAC), and Neshama: the Association of Jewish Chaplains (NAJC) were invited to complete an online survey during February-April 2015. A total of 1007 people responded to the 41-item instrument, but the final study sample was comprised of 382 "who reported working full-time as chaplains and were involved in PC 15% or more of their working hours" [MS p. 2].
Among the results:
The average number of PC patients seen per day was 5.2 (SD = 3.5), but the range was considerable
(1–30). [MS p. 2] ...A large proportion (81%) reported involvement in staff support at least sometimes. Approximately half reported at least sometimes being involved in bereavement follow-up (55%), educational (51%), and administrative activities (50%). ...Funding for most chaplains came from the chaplaincy department; only 7.1% reported being paid completely and 4.5% partly by the PC program. ...Fifty-nine percent reported their visits were frequently initiated by referrals from the PC team. Half (52%) reported frequently participating in PC rounds. Approximately a third (32%) reported frequently participating in the family meetings held by their PC team. [MS p. 3]
A key finding was that…
...there are important differences between chaplains who occasionally serve PC and chaplains who exclusively serve PC. Chaplains who always serve PC are more likely to build relationship, care for the dying, and attend to goals of care than their counterparts who serve PC only occasionally. [MS p. 4]
The article further reports on the content of chaplains' visits in terms of four types of activities: "Chaplain Craft," "Death and Dying," "Goals of Care Conversation," and "Existential and Spiritual Distress." Among those results, the authors note: "[W]e were impressed with the finding that over half of the chaplains working in PC are frequently involved in addressing goals of care with patients and their family" [MS pp. 5-6]. "Chaplains who were always involved in PC were more likely to engage in goals of care discussions (70%) than chaplains who were only occasionally involved (43%) ...[and] [c]haplains always involved in PC were also nearly twice as likely to facilitate communication between patients, the patients' family, and the healthcare team (65%) than occasionally involved chaplains (34%)" [MS p. 3]. In light of these findings, plus other research that has indicated health care professionals' inattention to religious or spiritual considerations in ICU goals-of-care conferences [--see Items of Related Interest, §I, below], our authors propose that "PC programs occasionally making use of unit chaplains or chaplains assigned to other areas of the hospital should consider increasing chaplain involvement in PC" [MS p. 6].
In our study we found that the greatest difference in practice between chaplains who only occasionally serve PC and chaplains who always serve PC is the extent to which chaplains address goals of care. Chaplains who always serve PC are far more likely to address goals of care (70%) than chaplains who occasionally serve PC (43%). They are also twice as likely to facilitate communication between patients, family, and the healthcare team (65%) than occasionally involved counterparts (34%). Our results add to emerging evidence that chaplains play an important role in helping patients and their loved ones make significant decisions about end-of-life treatment. [MS p. 6]
Our findings suggest that by exclusively utilizing one chaplain rather than occasionally involving several chaplains, PC programs will increase spiritual care for the dying, relationship building, and engagement in and presence at key goals of care discussions. [MS p. 6]
This reader was struck by the term, "chaplain craft," as a category of activity for analysis of visit content. (This terminology may be valuable to professional chaplaincy in general.)
We defined chaplain craft as the primary activities of chaplaincy, such as building relationships, providing ritual support (e.g., prayer), introducing spiritual care, and connecting patients with communities of faith.... The most frequent of these activities were building relationships (76%) and providing ritual support (64%); however, the level of involvement in PC impacted these activities. Chaplains who were always involved in PC were more likely to report that they visited patients to build relationships (87%) than chaplains who were only occasionally involved in PC (68%). [MS p. 3]
While this study "solicit[ed] participation from the vast majority of professional chaplains in the United States" [MS p. 6], the authors caution about its limits, including questions of the precise response rate, the validity of the questionnaire, and effects of self-reporting. And so, this research appropriately points to additional research:
Future investigators should compare these self-reports to documented care activities in patients' medical records. ...Investigators should examine the extent to which the content of chaplain visits is aligned with and effectively addresses the existential, religious, and spiritual needs of PC patients and their families. Another important line of inquiry is to examine how other members of the PC team perceive PC chaplain activities and to explore their understanding of what chaplains do. [MS p. 6]
This "first comprehensive description of chaplains working in PC and the activities in which they are involved" [MS p. 6] is significant beyond how it may help inform our profession "to provide more comprehensive support for the needs of patients and families at the end of life" [MS p. 6]. It is a good example of how descriptive research, which seems often overshadowed by interventional studies, can be vital to understanding not only what we do but also the very dynamics of our work. The finding of practical advantages in having palliative care-dedicated chaplains speaks to such wider issues as the importance of personal integration into multidisciplinary teams and of specialized practice experience. This article will naturally catch the eye of those who identify with its title, but there is much here for non-palliative care chaplains to consider as well.
Special comment to the Network from lead-author Jane Jeuland, Palliative Care Chaplain at Yale New Haven Hospital, New Haven, CT:
When in 2012 I began working as the first full-time inpatient Palliative Care Chaplain at Yale New Haven Hospital, I knew of few other chaplains in such a position. I was also the first service line chaplain in our Department of Spiritual Care, and colleagues in the department would ask me what was different about my practice. It was a difficult question to answer: What was indeed different about my work as a Palliative Care Chaplain? I wondered if other chaplains were in a similar dual role and how they were managing it. I wondered just how other Palliative Care Chaplains were relating to their interdisciplinary teams. I wondered how they might be processing their encounters with some of the sickest and most complex patients in the hospital who often were still hoping for a cure while facing a terrible prognosis. I wondered how many patients they were seeing each day and if they were teaching as often as I was. I had so many questions. I reached out and found over forty full-time Palliative Care Chaplains, and it turned out that they had questions much like mine.
I am not a trained researcher, but rather a stubbornly curious chaplain. I'm indebted to Dr. Schulman-Green, who helped me to see past my first draft of a twelve-item questionnaire, and to both Dr. Schulman-Green and Dr. Fitchett for mentoring me as I worked on our formal research survey and on the presentation of our results in the current article. The purpose of this study, in its most basic form, was to help Palliative Care Chaplains across the country connect, reduce isolation, and start to form a common understanding of the job we were doing. We were particularly interested in finding the difference in practice between integrated Palliative Care Chaplains and chaplains serving Palliative Care Chaplains infrequently. I welcome feedback and thoughts about the survey and article. Please email comments and questions to firstname.lastname@example.org.
Suggestions for Use of the Article for Student Discussion:
This is a brief article that could engage students generally, not only those involved with end-of-life care. Have students considered palliative care as a special focus? What advantages to patient care appear to come from concentrating in this field? Might they see in some of the findings about the content of chaplains' visits potential points for honing their own pastoral skills? How, for instance, would they see what they do in relation to the findings for "chaplain craft" [--see MS p. 3]? Can they relate to the findings for activities concerning Existential/Spiritual Distress as addressed in the text [MS pp. 3-4] and in the list in Table 6 [MS p. 5]? What is their reaction to the specific result that "[a]lmost 75% of the chaplains reported at least sometimes talking with patients about anger with God" [MS p. 4]? Also, have they experienced patients or families wanting to talk about goals of care, directly or indirectly? Have they thought of how their visits might play into goals-of-care discussions between patients/families and physicians? The group might discuss what to means to be integrated into a multidisciplinary team and think about how integrated they feel now and how they might become more a part of such a team. For students more familiar with research, the article's six tables provide detailed data, and particularly the breakdown of results according to whether respondents were occasionally, often, or always involved with palliative care deserves discussion.
Related Items of Interest:
I. Our article's authors draw attention [--see MS p. 4] to the following recent study:
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. [(Abstract:) IMPORTANCE: Although many patients and their families view religion or spirituality as an important consideration near the end of life, little is known about the extent to which religious or spiritual considerations arise during goals-of-care conversations in the intensive care unit. OBJECTIVES: To determine how frequently surrogate decision makers and health care professionals discuss religious or spiritual considerations during family meetings in the intensive care unit and to characterize how health care professionals respond to such statements by surrogates. DESIGN, SETTING, AND PARTICIPANTS: A multicenter prospective cohort study was conducted between October 8, 2009, and October 24, 2012, regarding 249 goals-of-care conversations between 651 surrogate decision makers and 441 health care professionals in 13 intensive care units across the United States. Audio-recorded conversations between surrogate decision makers and health care professionals were analyzed, transcribed, and qualitatively coded. Data analysis took place from March 10, 2012, through May 24, 2014. EXPOSURES: Goals-of-care conferences. MAIN OUTCOMES AND MEASURES: Constant comparative methods to develop a framework for coding religious and spiritual statements were applied to the transcripts. Participants completed demographic questionnaires that included religious affiliation and religiosity. RESULTS: Of 457 surrogate decision makers, 355 (77.6%) endorsed religion or spirituality as fairly or very important in their life. Discussion of religious or spiritual considerations occurred in 40 of 249 conferences (16.1%). Surrogates were the first to raise religious or spiritual considerations in most cases (26 of 40). Surrogates' statements (n=59) fell into the following 5 main categories: references to their religious or spiritual beliefs, including miracles (n=34); religious practices (n=19); religious community (n=8); the notion that the physician is God's instrument to promote healing (n=4); and the interpretation that the end of life is a new beginning for their loved one (n=4). Some statements fell into more than 1 category. In response to surrogates' religious or spiritual statements, health care professionals redirected the conversation to medical considerations (n=15), offered to involve hospital spiritual care providers or the patient's own religious or spiritual community (n=14), expressed empathy (n=13), acknowledged surrogates' statements (n=11), or explained their own religious or spiritual beliefs (n=3). In only 8 conferences did health care professionals attempt to further understand surrogates' beliefs, for example, by asking questions about the patient's religion. CONCLUSIONS AND RELEVANCE: Among a cohort of surrogate decision makers with a relatively high degree of religiosity, discussion of religious or spiritual considerations occurred in fewer than 20% of goals-of-care conferences in intensive care units, and health care professionals rarely explored the patient's or family's religious or spiritual ideas.]
II. Lead author Jane Jeuland is also co-author of a brief report of research that was noted in our Summer 2014 Newsletter (Item #3): "Exploring the importance of chaplain visits in a palliative care clinic for patients and companions." In 2015, she presented on the "The Current State of Palliative Care Chaplaincy" at the Association of Professional Chaplains' national conference in Louisville, KY [--audio available from the APC]. A 2013 interview with Chaplain Jeuland, "Profile of Palliative Care Chaplaincy: Q&A with Reverend Jane Jeuland," is available on the End-of-Life Ethics blog of Jessica Hahne, who was the Yale Scientific Magazine Editor-in-Chief, 2013, and Assistant at the Yale Interdisciplinary Center for Bioethics.
III. This month's study figures into an April 2016 PowerPoint presentation by co-cuthor George Fitchett, for the National Association of Catholic Chaplains, regarding "Evidence-Based Chaplaincy Care: Transforming Our Practice," available online from the NACC website.
IV. Our authors were "impressed with the finding that over half of the chaplains working in PC are frequently involved in addressing goals of care with patients and their family" [MS pp. 5-6]. Descriptive studies of professional practice often lead to revelations about what our colleagues are actually doing and can implicitly challenge us think about what we might or should be doing. This month's article notes the study behind a Chaplaincy Taxonomy that has recently helped further explicate what chaplains do:
Massey, K., Barnes, M. J., Villines, D., Goldstein, J. D., Pierson, A. L., Scherer, C., Vander Laan, B. and Summerfelt, W. T. "What do I do? Developing a taxonomy of chaplaincy activities and interventions for spiritual care in intensive care unit palliative care." BMC Palliative Care 14 (2015): 10 [electronic journal article designation]. [(Abstract:) BACKGROUND: Chaplains are increasingly seen as key members of interdisciplinary palliative care teams, yet the specific interventions and hoped for outcomes of their work are poorly understood. This project served to develop a standard terminology inventory for the chaplaincy field, to be called the chaplaincy taxonomy. METHODS: The research team used a mixed methods approach to generate, evaluate and validate items for the taxonomy. We conducted a literature review, retrospective chart review, focus groups, self-observation, experience sampling, concept mapping, and reliability testing. Chaplaincy activities focused primarily on palliative care in an intensive care unit setting in order to capture a broad cross section of chaplaincy activities. RESULTS: Literature and chart review resulted in 438 taxonomy items for testing. Chaplain focus groups generated an additional 100 items and removed 421 items as duplications. Self-Observation, Experience Sampling and Concept Mapping provided validity that the taxonomy items were actual activities that chaplains perform in their spiritual care. Inter-rater reliability for chaplains to identify taxonomy items from vignettes was 0.903. CONCLUSIONS: The 100 item chaplaincy taxonomy provides a strong foundation for a normative inventory of chaplaincy activities and outcomes. A deliberative process is proposed to further expand and refine the taxonomy to create a standard terminological inventory for the field of chaplaincy. A standard terminology could improve the ways inter-disciplinary palliative care teams communicate about chaplaincy activities and outcomes.]
There is, of course, "need for additional research" [MS p. 6], as we fill out a truly comprehensive picture of our discipline. One activity, for example, that might be investigated beyond those named in the Jeuland, et al. study and the one by Massey, et al. is the incidence of involvement in the management of physical pain. Our January 2007 Article-of-the-Month highlighted Australian research in that area.
Carey, L. B., Newell, C. J. and Rumbold, B. "Pain control and chaplaincy in Australia." Journal of Pain and Symptom Management 32, no. 6 (December 2006): 589-601. [This paper examines the experiences of 327 Australian health care chaplains, finding that "approximately 85% of [the sample] believed that it was part of the work of a chaplain to help patients and their families cope with physical pain," and "57.5% indicated that they had actually been involved...with assisting patients and/or their families with regard to pain control issues"[p. 594]. The data also showed there to be a significant difference in activities between staff chaplains and volunteer chaplains.]
And for another and more general recent survey of chaplains activities, approaching the subject from a slightly different angle, see our June 2016 Article-of-the-Month. It references several earlier studies exploring chaplains activities and interventions.
Idler, E. L., Grant, G. H., Quest, T., Binney, Z. and Perkins, M. M. "Practical matters and ultimate concerns, "doing," and "being": a diary study of the chaplain's role in the care of the seriously ill in an urban acute care hospital." Journal for the Scientific Study of Religion 54, no. 4 (December 2015): 722-738. [This chaplains' diary study found, among other things, that the "most commonly reported activity is 'active listening,' reported in 92 percent of all visits. However, active listening was almost always a prelude to another activity --just 14 percent of visits had active listening as their sole activity. The next most frequent activity is ministry of presence, found in 48.1 percent of visits, and spiritual assessment is reported in 38.8 percent of visits. Explicitly religious practices (other than prayer) were performed in just 3.2 percent of visits. Prayers were requested and/or said in 28.3 percent of visits. Chaplains reported touching patients or family members in 21.4 percent of visits and providing some form of assistance with advance directives in 10.1 percent of visits. Thus, active listening was reported for almost every visit, and prayers and other explicitly religious activities were recorded for fewer than 30 percent of visits." (--see p. 730)]