Discussing Death by Neurologic Criteria in Pediatrics: Opportunities and Challenges for Families and Clinicians.

OBJECTIVES

This pilot investigation aims to: 1) determine public understanding of brain death/death by neurologic criteria (BD/DNC), 2) identify approaches that may help families understand the concept and process of BD/DNC determination, and 3) contribute recommendations to a future BD/DNC toolkit.

DESIGN

Multicenter mixed-methods study of Patient and Family Advisory Council (PFAC) members carried out during 2024.

SETTING

Four children's hospitals in the United States.

SUBJECTS: PFAC members.

INTERVENTIONS: Following an introductory PFAC meeting outlining the study objectives, we distributed surveys to PFAC members to assess baseline understanding of BD/DNC. At a subsequent PFAC meeting, investigators provided education on BD/DNC, presented case scenarios, and led focus groups to explore content and resources of potential benefit to a future BD/DNC determination family toolkit. Thematic content analysis was used to summarize meeting field notes.

MEASUREMENTS AND MAIN

RESULTS

Thirty members completed the online survey and 55 participated in focus groups. Among survey respondents, 8 of 30 were familiar with the term death by neurologic criteria, 3 of 30 knew how BD/DNC is diagnosed, and 8 of 30 understood the distinctions between BD/DNC, coma, and persistent vegetative state. Focus groups highlighted facilitators to effective family discussions, including: 1) cultural sensitivity, 2) multidisciplinary team involvement/availability, 3) empathetic communication, 4) peer supports, and 5) trust. Barriers included: 1) limited communication training/skills, 2) lack of standardized care/information, 3) insufficient real-time credible resources, 4) perceived links with organ donation, 5) time constraints, and 6) diagnostic confusion. Participants recommended toolkits incorporating plain-language explanations (e.g., infographics), free online resources, and peer support.

CONCLUSIONS

Our findings confirm that lay person understanding of BD/DNC is limited, even for PFAC members. Family understanding and experiences during this emotionally challenging time might be improved with: 1) clinician training in clear and culturally responsible communication, 2) online educational resources, and 3) consistent institutional support.