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July 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

 

Lewis, A. and Kitamura, E. "The intersection of neurology and religion: a survey of hospital chaplains on death by neurologic criteria." Neurocritical Care (2021): online ahead of print, 6/21/21. 13pp.

[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 article presents a data-rich survey of hospital chaplains in the US, on a subject of clinical importance. The results are fairly straightforward. Data here help paint a picture for chaplains about who we are, and point toward initiatives for professional education and further research. Elizabeth Kitamura is a chaplain with the Department of Spiritual Care at New York University Langone Medical Center, and Ariane Lewis, MD, is the Director of Neurocritical Care, also at NYU Langone and has offered (below) a special note to ACPE Research readers. Lewis and Kitamura additionally collaborated on research published last fall on "Allied Muslim Healthcare Professional Perspectives on Death by Neurologic Criteria" [--see Related Items of Interest, §I, below].

Although brain death/death by neurologic criteria (BD/DNC) is equivalent to death by cardiopulmonary criteria throughout much of the world, religious attitudes toward BD/DNC vary. Because of this, families sometimes object to performance of an assessment for BD/DNC determination or to discontinuation of organ support after BD/DNC on the basis of their religious beliefs. [MS p. 1]
Recognizing that "[h]ospital chaplains work at the intersection between religion and medicine" [MS p. 10] and are in a position to be involved with circumstances of BD/DNC both in terms of observing and affecting clinical cases, the authors distributed a 38-item online survey [--see Related Items of Interest, §II, below] to US chaplains through major chaplaincy organizations. Of the 601 respondents who answered at least one question, 512 "self-identified as an inpatient hospital chaplain" [MS p. 3] and constituted the sample here. If the total number of chaplains connected with these organizations is estimated at around 4,435, then the response rate would be about 12%, but it should be noted that 463 respondents identified as members of the Association of Professional Chaplains, which would be about 22% of that one organization. The sample involved respondents from every region of the US. One quarter of the chaplains worked in a state where there was legal accommodation of religious objections to BD/DNC (i.e., New Jersey, New York, California, and Illinois). Half of the whole sample said that they had been a chaplain for more than 10 years.

Apart from demographics, the questions explored chaplains' experience, knowledge, beliefs, and perspectives regarding BC/DNC. Among the extensive set of results from this survey are the following:

  • "Nearly every respondent (494 of 512; 97%) had been involved in a case in which a patient was undergoing an assessment for determination of BD/DNC." [MS p. 4]

  • "Half (274 of 508; 56%) of the respondents had been involved in a case in which a family objected to performance of an assessment for determination of BD/DNC or to discontinuation of organ support on the basis of their religious beliefs." [MS p. 4]

  • "...[O]nly half (261 of 505; 52%) of respondents knew that declaration of BD/DNC requires absence of consciousness." [MS p. 3]

  • "A quarter of respondents (144 of 505; 29%) were aware that declaration of BD/DNC requires irreversible damage to the brain, absence of consciousness, absence of purposeful movement, brainstem areflexia, and inability to breathe spontaneously and does not require absence of heartbeat or kidney function." [MS p. 3]

  • "The majority of respondents were aware that BD/DNC is legally equivalent to cardiopulmonary death throughout the USA (433 of 511; 85%) and that outside of organ donation, organ support is routinely discontinued after declaration of BD/DNC (464 of 511; 91%); knowledge of the former was related to involvement in a case in which a family objected to performance of an assessment for determination of BD/DNC or to discontinuation of organ support on the basis of their religious beliefs..., but knowledge of the latter was not related to demographic factors or experience with BD/DNC." [MS pp. 3-4]

  • "Half (230 of 508; 45%) of respondents were aware that some states legally require accommodation to religious objections to BD/DNC; there was a trend toward increased awareness about this among respondents from accommodation states." [MS p. 4]

  • The "majority of respondents believed that a person who is declared brain dead in accordance with the AAN [American Academy of Neurology] standard is dead (427 of 510; 84%)." [MS p. 6]

  • "The majority of respondents (354 of 509; 70%) believed mechanical ventilation, hydration, nutrition, and medications should not be continued after BD/DNC, outside of organ donation; and only a paucity believed new therapies should be started (21 of 509; 4%) or cardiopulmonary resuscitation should be performed after BD/DNC (8 of 508; 2%)." [MS p. 6]

  • A majority (68%) believed that "families should not be able to choose whether an assessment for determination of BD/DNC is performed or whether organ support is discontinued after BD/DNC" [MS p. 12 and Table 3, MS p. 7], with only 16% saying that families should be able to choose. However, "[o]ne quarter (118 of 509; 23%) believed every state should legally require hospitals to provide accommodation to religious objections." [MS p. 6]

  • "The report from chaplains' experience suggests that "[a]lthough religious objections were made by members of all faiths, they appear to be disproportionately made by families of Buddhist, Hindu, Jewish, or Muslim patients when considering the percentage of the USA population who practices these religions." The most frequently cited religion, however, was Christianity, and within that, Evangelical Protestant. [MS p. 6, with Figure 1]

  • "On a scale of 1-10, from least to most comfortable, the median level of comfort with the way the hospital handled the objection was 8." [MS p. 5] Also, "[o]n a scale of 1-10, from least to most comfortable, the median level of comfort with the outcome of the objection was 8." [MS p. 6]

  • "Respondents cited a number of challenging aspects of handling religious objections to BD/DNC, including the fact that a person who is brain dead does not look dead, religious objections are often based on grief rather than long-standing religious beliefs, objections can cause moral distress for the health care team, and it is unclear who should pay for organ support in the setting of an objection." [MS p. 10]

In a free-text section of the survey, respondents suggested ways that BD/DNC could be managed better, including the improvement of "education for the health care team on the need for early, clear, candid, consistent, empathetic, and patient communication and education about BD/DNC" [MS p. 10], including caution about mixed messaging and misuse of the term brain death. Nevertheless, the overall data here indicate that "additional education on BD/DNC and management of religious objections to BD/DNC for inpatient hospital chaplains is needed" [MS p. 10], even though the authors point out that "awareness about BD/DNC does not dictate beliefs about BD/DNC" [MS p. 12].

"Multiple beliefs about whether BD/DNC is death, management after BD/DNC, and the ability to choose the criteria for death were significantly related to lack of (1) awareness that BD/DNC requires absence of brainstem re exes; (2) awareness that BD/DNC is the medical and legal equivalent of cardiopulmonary death throughout the USA; (3) awareness that organ support is routinely discontinued after BD/DNC, outside of organ donation; and (4) board certification." [MS p. 6]
This reader was especially struck by two of the chaplains' suggestions. First, respondents proposed that medical teams "involve chaplaincy early" [MS p. 10]. Indeed, earlier rather then later involvement would seem best in any complex situation, but the effectiveness of a chaplain is surely as much a function of preparedness as it is timeliness. The authors comment that it would have been interesting to "ask respondents if they believed they needed additional education about BD/DNC" [MS p. 12]. Second, respondents suggested that family members be invited to "observe the assessment" of BD/DNC, though we are not sure how many chaplains have witnessed this themselves. If family members are to witness a brain death exam -- hardly a casual experience -- then a question is: What kind of support should be in place for them, and what roles might the chaplain play? And, how might the research and dialogue in the medical literature about family presence at resuscitations be informative?

The authors well address limitations of the study [--see MS pp. 11-12], and the data here lay a foundation for much future research. For example: Would there be differences in responses from chaplains in BD/DNC cases based upon whether a chaplain was regularly assigned to an ICU or merely called into ICU cases when needed, since differences have been found in research into palliative care chaplains' involvement with families along these lines [--see our March 2017 Article-of-the-Month]? Would there be differences that turn on the mechanism of injury behind cases, such as an anoxic brain injury following a cardiopulmonary arrest versus a catastrophic gunshot injury to the head? Has moral/ethical distress in staff or in chaplains themselves been a factor in the course of BD/DNC cases? Also, it is worth noting that the present study does not consider the closely related issue of Donation after Cardiac/Circulatory Death (DCD), which may present different dynamics and particular religious concerns. It seems reasonable to assume that the need for chaplains' education about DCD would be at least as great as that for BD/DNC.

This study not only fills a "knowledge gap" [MS p. 10] about chaplains' experiences, perspectives, and beliefs, but provides "crucial" [MS p. 2] input for better understanding of religious objections around BD/DNC. As such, it supports greater integration of chaplains into multidisciplinary teams, and it implicitly lifts up the role of the chaplain as a key connector between families and physicians in decision-making, over and above all the work directly supporting the individuals in crisis.


 

Suggestions for Use of the Article for Student Discussion: 

This month's selection may be best suited for groups with practical experience in BD/DNC cases, but it could be useful with students in preparation for their work in such situations and as a pathway into education on the subject. This would be a good opportunity to invite in a physician or nurse specialist as a guest. The article offers a great deal of data, but it is organized and presented in a manner that should make the themes of the research easily comprehendible. Conveniently, the authors have made available the actual survey [--see Related Items of Interest, §II, below], and it might be worthwhile to ask students to complete that questionnaire prior to reading the article. Discussion could begin with the survey itself, or students' responses to it could be incorporated along the way. Pairing the data of the article with students' own views and experiences should personally animate the statistics. What has been most unexpected in the chaplains' own experience of BD/DNC cases? What was the most surprising thing about the study's results? What does the group think could help improve the handling of BD/DNC scenarios? What about the idea raised in the article about "uniformity" [MS p. 2]? What do people think about families' rights (or the lack of rights) to choose whether a BD/DNC assessment is performed? If one or more members of the group express their own religious objections to BD/DNC, it will fall to the ACPE Educator or group facilitator to decide how much that should be discussed, since it could either deepen the conversation or divert it. Finally, what is the group's thinking about how issues of BD/DNC play into issues of organ donation?


Special communication to ACPE Research readers from our featured article's lead author, Ariane K. Lewis, MD, Director, Division of Neurocritical Care, New York University Langone Medical Center (New York, NY):

Chaplains play an important role in the interdisciplinary team involved in assessment for death by neurologic criteria. Despite the fact that there are varying religious perspectives on death by neurologic criteria, in this survey of 512 hospital chaplains, we found that the majority (84%) of respondents believed that death can be declared using neurologic criteria. It is imperative for chaplains to be educated about death by neurologic criteria in order to ensure they are well informed when they are involved with patients who have catastrophic brain injuries.  --AKL


 

Related Items of Interest:

I.  Previous collaboration between our featured co-authors:

Lewis, A., Kitamura, E., and Padela, A. I. "Allied Muslim healthcare professional perspectives on death by neurologic criteria." Neurocritical Care 33, no. 2 (October 2020): 347-357. [(Abstract:) BACKGROUND: We sought to evaluate how Muslim allied healthcare professionals view death by neurologic criteria (DNC). METHODS: We recruited participants from two listservs of Muslim American health professionals to complete an online survey questionnaire. Survey items probed views on DNC and captured professional and religious characteristics. Comparative statistical analyses were performed after dichotomizing the sample based on religiosity, and Chi-squared, Fisher's exact tests, likelihood ratios and the Kruskal-Wallis test were used to assess differences between the two cohorts. RESULTS: There were 49 respondents (54%) in the less religious cohort and 42 (46%) in the more religious cohort. The majority of respondents (84%) believed that if the American Academy of Neurology guidelines are followed and a person is declared brain dead, they are truly dead; there was no difference on this view based on religiosity. Less than a quarter of respondents believed that outside of organ donation, mechanical ventilation, hydration, nutrition or medications should be continued after DNC; again, there was no difference based on religiosity of the sample. Importantly, half of all respondents believed families should be able to choose whether an evaluation for DNC is performed (40% of the less religious cohort and 60% of the more religious cohort, p=0.09) and whether organ support is discontinued after DNC (49% of both cohorts, p=1). CONCLUSIONS: Although the majority of allied Muslim healthcare professionals we surveyed believe DNC is death, half believe that families should be able to choose whether an evaluation for DNC is performed and whether organ support should be discontinued after DNC. This provides insight that can be helpful when making medical practice policy and addressing legal controversies surrounding DNC.]

 

II.  The authors conveniently make their 38-item survey tool available as supplementary material, available online from the journal. There is no information about its development or psychometric testing. Note that a single item makes specific reference to a religious group (i.e., Christians), and the effect of its placement in the middle of the questionnaire on items following it -- for Christian or non-Christian respondents -- is not clear.

The fact that this survey got a relatively good response is testament to the authors' ability to attract study participants through chaplaincy organizations. An example of their advertisement of the survey through the National Association of Catholic Chaplains, placed in the NACC's News:

Would you please consider participating in a chaplain survey?
Chaplain Elizabeth Kitamura of NYU Langone Health requested our participation in a valuable survey. She writes, "Recently, a number of stories have been published about controversial cases in which families objected to declaration of death by neurologic criteria (brain death). As a neurointensivist with an interest in neuroethics, I am working with a chaplain at my hospital (NYU Langone Medical Center) to explore the perspective of hospital chaplains on the use of neurologic criteria to declare death. We would greatly appreciate your willingness to provide us with your thoughts on this topic by completing a brief (10 minute) anonymous survey at https://openredcap.nyumc.org/apps/redcap/surveys/?s=W4A7ETEF8L. The results will be included in a research study which will ultimately be submitted for publication. If you have any questions, please feel free to email ariane.kansas.lewis@gmail.com. Thank you very much."

 

III.  Our featured authors comment on the World Brain Death Project (WBDP) [MS pp. 11 and 12]. The currently definitive article on this is listed below, but readers may also appreciate a video podcast available from the American Medical Association's Ed-Hub or via YouTube, with Ariane Lewis as one of four people interviewed. Dr. Lewis is a leading voice in the academic literature on the determination of brain death and has published variously about it, including a Viewpoint piece: Lewis, A., Bonnie, R. J. and Pope, T., "Is there a right to delay determination of death by neurologic criteria?" JAMA Neurology 77, no. 11 (November 2020): 1347-1348.

Greer, D. M., Shemie, S. D., Lewis, A., Torrance, S., Varelas, P., Goldenberg, F. D., Bernat, J. L., Souter, M., Topcuoglu, M. A., Alexandrov, A. W., Baldisseri, M., Bleck, T., Citerio, G., Dawson, R., Hoppe, A., Jacobe, S., Manara, A., Nakagawa, T. A., Pope, T. M., Silvester, W., Thomson, D., Al Rahma, H., Badenes, R., Baker, A. J., Cerny, V., Chang, C., Chang, T. R., Gnedovskaya, E., Han, M. K., Honeybul, S., Jimenez, E., Kuroda, Y., Liu, G., Mallick, U. K., Marquevich, V., Mejia-Mantilla, J., Piradov, M., Quayyum, S., Shrestha, G. S., Su, Y. Y., Timmons, S. D., Teitelbaum, J., Videtta, W., Zirpe, K. and Sung, G. "Determination of brain death/death by neurologic criteria: the World Brain Death Project." JAMA 324, no. 11 (September 15, 2020): 1078-1097. [This is a comprehensive article regarding the World Brain Death Project, with much that is highly technical. However, chaplains may be interested in the section on Religion and BD/DNC: Managing Requests to Forgo a BD/DNC Evaluation or Continue Somatic Support After BD/DNC [pp. 1092-1093], including Table 3: Perspectives of Major Religions on Brain Death/Death by Neurologic Criteria (BD/DNC). Also, see the article's Supplement 12: "Religion and Brain Death/Death by Neurologic Criteria: Managing Requests to Forgo a Brain Death Evaluation or Continue Somatic Support After Brain Death/Death by Neurologic Criteria."]

 

IV.  There are many resources describing the standard brain death exam, but most do so either very technically or generally. Chaplains who have not witnessed a brain death exam may find useful a recent practical description: Wijdicks, E. F. M., "How I do a brain death examination: the tools of the trade," Critical Care (London, England). 24, no. 1 (2020): 648 [electronic journal article designation], with open access availability.

The following articles look specifically at family presence during a brain death exam.

Reid, M. " The presence of relatives during brainstem death testing in an intensive care unit." Journal of the Intensive Care Society 14, no. 4 (October 2013): 324-329. [This literature review out of England covers potential advantages and disadvantages in families' witnessing a brain death exam. The author concludes that while it is "important that nopressure be put on relatives to view testing" [p. 326], there may be benefits consistent with the presence of families at resuscitations. Adequate support of families is emphasized, including a dedicated staff member assigned to families for the testing. Research seems to indicate that witnessing the brain death exam may be overall less distressing than presumed by health care providers or patients.] [This article is available online from the journal.]

Tawil, I., Brown, L. H., Comfort, D., Crandall, C. S., West, S. D., Rollstin, A. D., Dettmer, T. S., Malkoff, M. D. and Marinaro, J. "Family presence during brain death evaluation: a randomized controlled trial." Critical Care Medicine 42, no. 4 (April 2014): 934-942. [This study out of the University of New Mexico School of Medicine involved 38 family members of 11 patients who were randomized to be present during the brain death exam, and 20 family members of 6 patients who were randomized not to be present. Family members were accompanied by a trained chaperone as part of a detailed protocol, and they were assessed for psychological well-being between 30-90 days after the event. Results indicated that the protocol seemed to allow for family presence during brain death evaluation with no apparent adverse impact on psychological well-being, and that it improved family members' understanding of brain death.]

Issues of family presence at a brain death exam might be informed by the literature on family presence at resuscitations, which was the topic of our August 2009 Article-of-the-Month.

 

V.  Our featured authors used REDCap (Research Electronic Data Capture) for their survey, and they cite the article below in connection. For more on REDCap, see www.project-redcap.org.

Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzales, N. and Conde, J. G. "A metadata-driven methodology and work flow process for providing translational research informatics support." Journal of Biomedical Informatics 42, no 2 (April 2009), 377-381. [(Abstract:) Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.]

Other recent examples of research with chaplain co-authors using REDCap are:

Bandini, J. I., Courtwright, A., Zollfrank, A. A., Robinson, E. M. and Cadge, W. "The role of religious beliefs in ethics committee consultations for conflict over life-sustaining treatment." Journal of Medical Ethics 43, no. 6 (June 2017): 353-358.

Dolan, J. G., Hill, Douglas L., Faerber, J. A., Palmer, L. E., Barakat, L. P. and Feudtner, C. "Association of psychological distress and religious coping tendencies in parents of children recently diagnosed with cancer: A cross-sectional study." Pediatric Blood and Cancer 68, no. 7 (July 2021): e28991 [electronic journal article designation].

Grossoehme, D. H., Friebert, S., Baker, J. N., Tweddle, M., Needle, J., Chrastek, J., Thompkins, J., Wang, J., Cheng, Y. I., and Lyon, M. E. "Association of religious and spiritual factors with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference among adolescents and young adults with cancer." JAMA Network Open 3, no. 6 (June 5, 2020): e206696 [electronic journal article designation].

Livingston, J., Cheng, Y. I., Wang, J., Tweddle, M., Friebert, S., Baker, J. N., Thompkins, J. and Lyon, M. E. "Shared spiritual beliefs between adolescents with cancer and their families." Pediatric Blood and Cancer 67, no. 12 (December 2020): e28696 [electronic journal article designation].

Torke, A. M., Maiko, S., Watson, B. N., Ivy, S. S., Burke, E. S., Montz, K., Rush, S. A., Slaven, J. E., Kozinski, K., Axel-Adams, R. and Cottingham, A. "The Chaplain Family Project: development, feasibility, and acceptability of an intervention to improve spiritual care of family surrogates." Journal of Health Care Chaplaincy 25, no. 4 (October-December 2019): 147-170. [This research was featured as an Article-of-the-Month in June 2019, ahead of print. See that page also for additional research using REDCap.]

 

 


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