(125) Death Spiral by Neurologic Criteria: Navigating Parental Responses to Pediatric Brain Death

Introduction: A child’s death is profoundly difficult. Death by neurologic criteria (DNC) can pose unique dilemmas. Families may disagree with the concept or determination of DNC, and providers can struggle to refine skills and processes used in low-frequency events. We aimed to characterize multiprofessional experiences of pediatric DNC, including contested cases.

Methods: Inductive thematic analysis of semi-structured interviews with professionals who encounter pediatric DNC. Sampling was purposive.

Results: Eighteen key informants from 10 centers participated, including 10 intensivists, 3 ethicists, 1 neurologist, 2 advanced practice nurses, and 2 attorneys. Sixteen participants described requests for continued somatic support after DNC declaration, and 13 experienced cases involving the courts. Thematic analysis identified 5 themes: 1) range of challenges encountered in pediatric DNC; 2) importance of communication, language, and trust; 3) need for effective staff support; 4) the telos of medicine, including supporting families; and 5) cultivating potential for growth. Participants described all pediatric DNC as tragic and difficult, and noted increasing clinical, interpersonal, emotional, and resource tolls as conflict escalated. As in the “death spiral” of game theory, early failures of communication and trust-building increased the likelihood of subsequent problems. With legal involvement, stakeholders reported multifaceted needs for support from specific entities such as hospital administration and ethics, but support was not always perceived to be provided effectively. Contested DNC cases threatened participants’ professional identities and challenged values surrounding fiduciary duties, avoidance of harm, and resource allocation, and thus brought potential for transformative personal and professional growth.

Conclusions: Pediatric DNC is complex even absent conflict. Clear, consistent communication, building trust, and identifying the nature of any objections are important, especially early in the course. Proactive institutional and subspecialty support is necessary as conflict increases. Future research should expand perspectives from community practitioners, who may have different experiences and needs. Family input is also key to fully understanding communication and conflict in pediatric DNC.