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

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 ethical arguments and weigh their merits. The two key principles here are parental rights and authority, and the best interests of child, and the contested issue is what to do if these appear to clash. Another approach is to consider the principles in the practical clinical context. What would be the implications and consequences of adopting the model of parents as final decision-makers? Are parents able to carry out this role, and do they really want it? What is the effect on parents of taking this role? Answers to these questions could modify the in-principle ethical position. In this paper, we review the empirical evidence currently available on these questions, in relation to parents of infants and young children. Overall, the literature suggests that parents do want to be involved and do not suffer adverse psychological consequences from their involvement. However, the crucial ethical implication of the evidence is that the level and nature of parental involvement in decision-making should be negotiated with the parents in each case, because parents have a range of different views about taking final responsibility for decisions.