Helping parents make and survive end of life decisions for their seriously ill child

Abstract

American parents of chronically ill children prefer to be involved in decision making about their ill child's end of life care. Parents trust the clinicians involved with their ill child to make reasoned judgments on behalf of the ill child and to consistently look out for the child's best interests. Parents report that having access to understandable information about their child's health status influences their ability to participate in end of life decisions. This information includes the certainty that all reasonable attempts to save the child have been done and in the best possible ways.