Autonomy and Best Interests in Pediatric End-of-Life Decision-Making

Abstract

Pediatric end-of-life decision-making sits at the unresolved intersection of three imperfect authorities: the child, the parents, and the clinical team. This perspective examines how the best-interests standard, developed originally for family-law disputes, functions once transplanted into intensive-care decisions about withdrawing or withholding life-sustaining treatment. It traces the limits of parental authority, the uneven application of the mature minor doctrine to end-of-life refusals by adolescents, and the procedural mechanisms -- ethics consultation, second opinions, and judicial review -- available when parents and clinicians cannot agree. Recent literature converges on a layered model in which no single actor holds unilateral authority and the weight given to the child's own voice should rise with developmental capacity and fall with the irreversibility of the decision, but this model is harder to operationalize than any single framework it replaces. We argue that defensible practice requires treating capacity assessment as a genuine clinical task,
engaging ethics consultation early enough to slow contested decisions without displacing the family, and giving more institutional weight to what dying children and adolescents themselves report wanting.