Death determination by neurologic criteria—what do families understand?

Abstract

Purpose Currently, there is little empirical data on family understanding about brain death and death determination. The purpose of this study was to describe family members’ (FMs’) understanding of brain death and the process of determining death in the context of organ donation in Canadian intensive care units (ICUs). Methods We conducted a qualitative study using semistructured, in-depth interviews with FMs who were asked to make an organ donation decision on behalf of adult or pediatric patients with death determination by neurologic criteria (DNC) in Canadian ICUs. Results From interviews with 179 FMs, six main themes emerged: 1) state of mind, 2) communication, 3) DNC may be counterintuitive, 4) preparation for the DNC clinical assessment, 5) DNC clinical assessment, and 6) time of death. Recommendations on how clinicians can help FMs to understand and accept DNC through communication at key moments were described including preparing FMs for death determination, allowing FMs to be present, and explaining the legal time of death, combined with multimodal strategies. For many FMs, understanding of DNC unfolded over time, facilitated with repeated encounters and explanation, rather than during a single meeting. Conclusion Family members’ understanding of brain death and death determination represented a journey that they reported in sequential meeting with health care providers, most notably physicians. Modifiable factors to improve communication and bereavement outcomes during DNC include attention to the state of mind of the family, pacing and repeating discussions according to families’ expressed understanding, and preparing and inviting families to be present for the clinical determination including apnea testing. We have provided family-generated recommendations that are pragmatic and can be easily implemented. Supplementary Information The online version contains supplementary material available at 10.1007/s12630-023-02416-3.

When is a person dead? The Canadian public’s understanding of death and death determination: a nationwide survey

“…These findings are complementary to our investigation of family members’ understanding and acceptance of DNC, where we found facilitators to acceptance of the determination of death included provision of and repetition of information over time including visual information such as seeing the imaging, and witnessing the determination, in particular the apnea test. 20 Improving public knowledge of death and how it is determined prior to learning of a loved one’s critical illness and death may improve understanding and acceptance during a time of grief and stress, during which it can be difficult to process information, 21 , 22 in particular around complex concepts of death. Further, it is imperative to continue to improve health care professionals’ positive communication methods, using strategies grounded in social science research, to better engage community members in discussions about death.…”

An Update on Brain Death/Death by Neurologic Criteria since the World Brain Death Project

“…There have also been publications that highlighted the communication between health care professionals and families about BD/DNC determination and management of conflict related to BD/DNC. 228 229 230 First, Sarti et al interviewed 179 family members and generated recommendations related to health care professional communication including the importance to assess family member state-of-mind, recognition that BD/DNC may be counterintuitive, preparation for the evaluation, explanation of the evaluation, designation of the time of death, and general communication techniques. 229 Second, after a highly publicized lawsuit in Canada which the family of Taquisha McKitty objected to discontinuation of somatic support following BD/DNC determination, her father, the ICU physician and a clinical ethicist, collaborated to publish their reflections on this protracted conflict, which ultimately ended with her cardiac arrest 1 year, 3 months and 10 days after BD/DNC declaration.…”

Editor’s Choice Articles for August

“…Then consider the work about the public’s understanding of the definition and determination of death. There is a 2022 scoping review (11), a 2023 national survey of public opinion in Canada (12), and a 2023 report of interviews in family members with relatives dying after determination of DNC (13). Despite these detailed articles on families at the time of death, we have heard little about physicians and their decision-making when families refuse testing for the determination of DNC (14).…”