A thematic analysis of a survey of hospital chaplains on death by neurologic criteria.

INTRODUCTION: Little is known about chaplains' views on brain death/death by neurologic criteria (BD/DNC). Thematic analysis of comments made by hospital chaplains about BD/DNC can illuminate their perspectives on working with patients, families, and interdisciplinary teams during assessment for BD/DNC. MATERIALS AND METHODS: In an electronic survey distributed to members of five chaplaincy organizations between February and July 2019, we elicited free-text comments about BD/DNC. We performed a thematic analysis of the comments. RESULTS: Four themes were present: (1) definition of life and death, (2) respect with a subtheme of physician obligation, (3) collaboration with a subtheme of communication, and (4) education with a subtheme of scepticism. CONCLUSIONS: Hospital chaplains are essential members of the interdisciplinary team involved in BD/DNC evaluation. They aim to ensure the interaction between families and the interdisciplinary team at the boundary of life and death and the intersection between religion and medicine is respectful, collaborative, and educational.

The Intersection of Neurology and Religion: A Survey of Hospital Chaplains on Death by Neurologic Criteria.

BACKGROUND: To enhance knowledge about religious objections to brain death/death by neurologic criteria (BD/DNC), we surveyed hospital chaplains about their experience with and beliefs about BD/DNC. METHODS: We distributed an online survey to five chaplaincy organizations between February and July 2019. RESULTS: There were 512 respondents from all regions of the USA; they were predominantly Christian (450 of 497; 91%), board certified (413 of 490; 84%), and employed by community hospitals (309 of 511; 61%). Half (274 of 508; 56%) of the respondents had been involved in a case in which a family objected to BD/DNC on the basis of their religious beliefs. In 20% of cases involving a religious objection, the patient was Buddhist, Hindu, Jewish, or Muslim. Most respondents believed that a person who is declared brain dead in accordance with the American Academy of Neurology standard is dead (427 of 510; 84%). A minority of respondents believed that a family should be able to choose whether an assessment for determination of BD/DNC is performed (81 of 512; 16%) or whether organ support is discontinued after BD/DNC (154 of 510; 30%). These beliefs were all significantly related to lack of awareness that BD/DNC is the medical and legal equivalent of cardiopulmonary death throughout the USA and that organ support is routinely discontinued after BD/DNC, outside of organ donation. CONCLUSIONS: Hospital chaplains, who work at the intersection between religion and medicine, commonly encounter religious objections to BD/DNC. To prepare them for these situations, they should receive additional education about BD/DNC and management of religious objections to BD/DNC.

Parental Use of Religion and Spirituality in Medical Decision-Making.

New medical technology has extended children's lives, creating challenges for parental decision-making. Many parents utilize religion or spirituality (R/S). This study examined the semi-structured interviews of 24 parents who made significant medical decisions. Major domains included drawing on guidance from an internal or personal R/S source; some described making decisions by surrendering decision-making agency to the Divine; being guided by beliefs in the afterlife, including that their child's suffering would be alleviated in death, and/or making their decision in a partnership with the Divine. Participants also describe being guided by external R/S sources. Participants spoke about receiving counsel from spiritual communities, that God worked through the medical team, and/or seeking guidance through prayer or spiritual writings. Parents use R/S to make medical decisions for their children, and many consider the chaplain to be part of the medical team. Chaplains have a role to play in helping to facilitate the use of religion/spirituality in medical decision-making for those parents who identify as religious/spiritual as well as those who are not currently utilizing their beliefs.

Allied Muslim Healthcare Professional Perspectives on Death by Neurologic Criteria.

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.

"There's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care.

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective: The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Methods: This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Results: Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusions: Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered.