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

Document Type

Journal Article

Publication Date

4-2-2026

Journal

Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies

DOI

10.1097/PCC.0000000000003929

Keywords

bereavement; brain; communication; death; family support

Abstract

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.

Department

Pediatrics

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