"I want to live, until I don't want to live anymore": involving children with life-threatening and life-shortening illnesses in decision making about care and treatment

Abstract

Pediatric societies in North America and in the United Kingdom and Europe take the position that children should be part of the decision-making process. Less clear, however, is how that should be accomplished. This article outlines what needs to be considered when taking on the challenge of involving children with life-threatening and life-limiting illnesses in decision making regarding care and treatment and suggests an approach to involving children that recognizes their abilities, vulnerabilities, and relationships with others while at the same time ensuring an ethical and meaningful role for children.