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

Erica Andrist, Division of Pediatric Critical Care Medicine, C.S. Mott Children's Hospital, Ann Arbor, MI.
Janice I. Firn, Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI.
Matthew P. Kirschen, Division of Pediatric Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA.
Nneka O. Sederstrom, Health Equity Department, Hennepin Health Care, Minneapolis, MN.
Alexander A. Kon, Community Children's, Missoula, MT.
Jessica C. Fowler, Division of Pediatric Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA.
Amy H. Wolfe, Department of Critical Care Medicine, Children's National Hospital, Washington, DC.
Mary E. McIlroy, Division of Pediatric Critical Care Medicine, C.S. Mott Children's Hospital, Ann Arbor, MI.
Andrew Kiragu, Division of Pediatric Critical Care Medicine, Children's Hospital of Minnesota, Minneapolis, MN.
Wynne E. Morrison, Division of Pediatric Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA.
Ken Tegtmeyer, Division of Critical Care Medicine, Cincinnati Children's Hospital and Medical Center, Cincinnati, OH.
Kenya Agarwal, Division of Pediatric Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA.
Thaddeus M. Pope, Mitchell Hamline School of Law, St. Paul, MN.
Christian J. Vercler, Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI.
Denise Winiarski, Michigan Medicine, University of Michigan Health System, Ann Arbor, MI.
Nancy McGowan, Division of Pediatric Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA.
Steven M. Leber, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI.
Christopher L. Carroll, Department of Pediatrics, University of Florida, Jacksonville, FL.
Heidi R. Flori, Division of Pediatric Critical Care Medicine, C.S. Mott Children's Hospital, Ann Arbor, MI.

Document Type

Journal Article

Publication Date

4-23-2025

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.0000000000003744

Keywords

brain death; communication; end-of-life care; ethics; family conflict

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.

Department

Pediatrics

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