Pediatric Death by Neurologic Criteria: The Ever-Changing Landscape and the Expanding Role of Palliative Care Professionals

Abstract

Pediatric palliative care providers are especially suited to support families and medical teams facing a potential diagnosis of brain death, or death by neurologic criteria (DNC), when a child suffers a devastating brain injury. To support pediatric palliative care providers’ effectiveness in this role, this article elucidates the clinical determination of DNC and the evolution of the ethical and legal controversies surrounding DNC. Conceptual definitions of death used in the context of DNC have been and continue to be debated amongst academicians, and children’s families often have their own concept of death. Increasingly, families have brought legal cases challenging the definition of death, arguing for a right to refuse examination to diagnose DNC, and/or voicing religious objections. We describe these conceptual definitions and legal challenges then explore some potential reasons why families may dispute a determination of DNC. We conclude that working with patients, families, and healthcare providers facing DNC carries inherent and unique challenges suited to intervention by interdisciplinary palliative care teams.