Themes in the Management of Pediatric Brain Death Contestation: Exploratory Qualitative Work From Multidisciplinary Health Professionals in the United States.

Abstract

Objectives: To explore health professionals' experiences of contested pediatric brain death/death by neurologic criteria (BD/DNC) cases, including factors contributing to conflict, resource needs and utilization, perceived utility of supports available, and case resolution and aftermath.

Design and methods: Inductive thematic analysis of semistructured interviews with members of the Society of Critical Care Medicine (SCCM) Contestation of Pediatric Brain Death Task Force.

Setting: Ten institutions across seven U.S. states and the District of Columbia.

Participants: Nineteen Task Force members were interviewed in 2023, including pediatric intensivists, neurologists, nurses, respiratory therapists, attorneys, palliative care clinicians, social workers, ethicists, and hospital leadership. Task Force members were recruited primarily because of their experience with contested BD/DNC, although some were recruited because of expertise in other relevant topics, such as communication, information acquisition in BD/DNC, and health equity.

Interventions: None.

Measurements and main results: We identified five themes relevant to managing pediatric BD/DNC contestation: 1) personnel to consider involving, including subspecialty consultation, social work, hospital leadership and administration, ethics teams, legal counsel, and security; 2) timelines to maintain, including factors to consider when deciding the most appropriate family accommodations; 3) support for families and patients, including strategies to enhance communication, identifying and mitigating mistrust, and connecting families with support both within and outside the hospital; 4) support for staff, including disseminating information throughout the care team, staff support for one another, and establishing written documentation and policies; and 5) complementary strategies that may augment approaches to BD/DNC contestation, such as policies addressing requests for potentially inappropriate treatment.

Conclusions: Family contestation of pediatric BD/DNC challenges all parties involved. The five themes identified from our qualitative analysis of interviews with experienced professionals do not constitute SCCM clinical practice guidance, but they will be used to inform the development of approaches to BD/DNC contestation through further scholarship and community consultation.