Parents and end-of-life decision-making for their child: Roles and responsibilities

Abstract

Background Whether parents want to be and should be the decision-maker for their child in end-of-life matters are contested clinical and ethical questions. Previous research outcomes are equivocal. Method A qualitative interview method was used to examine the views and experiences of 25 bereaved parents in end-of-life decision-making for their child. Data were analysed thematically. Results Three types of decision-making roles were identified: self-determined, guided (both involving active decision-making) and acquiescent (passive). The majority of parents had been active in the decision-making process for their child. They perceived themselves as the ultimate end-of-life decision-maker. Thi..