Ethics at the end of life: Who should make decisions about treatment limitation for young children with life-threatening or life-limiting conditions?

Abstract

It is now ethical orthodoxy that parents should be involved in the decision-making about their children's health care. This extends to decisions about whether to continue or to limit life-sustaining medical treatment for a child with a life-limiting or life-threatening condition. What remains contested and uncertain is the extent and nature of parental involvement, especially in this emotionally charged situation. In particular, should it be the parents, who are the ultimate decision-makers, taking final responsibility, should it be a shared decision, or should it be a medical decision that parents are simply asked to consent to? One approach to this issue is to consider the in-principle eth..