Title: Making medical decisions for children: a philosophical approach.
Funder: Wellcome Trust

Abstract: RESEARCH QUESTION ABSTRACT ONLY I intend to consider how medical decisions should be made for incompetent children. Recent work in medical ethics has concentrated on respect for autonomy, but those who are not competent have received less attention. Two intuitions seem particularly strong when making health care choices for children. Firstly, there is a strong belief that we should act in a child's interests, and secondly that parents have a 'right' to choose for their children. These can come into conflict. I will develop a framework to justify the way that we should make medical decisions for children. Within this area there are particular areas which deserve close scrutiny. Firstly, I will consider the epistemic question of how we should understand a child's interests which is a prerequisite for an attempt to go on to measure or judge a child's interests. Additionally, when a choice is made for a child, we often claim to act in the child's best interests. A best interests standard is demanding and is unlikely to be achieved in most situations (as it leaves no time to consider any other child's or the parent's interests). I will consider other standards of interests. And, in continuing an interest-based approach, to consider the way in which the parent's interests (in being parents) can be balanced with the child's interests. A further important question is whether medical decisions are different from other decisions that parents make for their children? This may be so as medical decisions may relate to very important interests, or perhaps because there are 'experts' in medicine. Furthermore, children, range from a new born baby to an almost competent adolescent. At one end, a baby can have no say, but an adolescent's views must be considered even though they are not binding (as they would if the adolescent was competent). The differing ways in which a child's views should be included deserves consideration. Over recent years more attention has been paid in the philosophical literature to children. The works of David Archard, Purdy (from a rights-based perspective) and Brighouse and Swift (from a political philosophical perspective), have considered children and the philosophy of the family. Buchanan and Brock have considered the way that medical treatment should be decided for incompetents. Their work lies more with those who have been competent and less so with those who have never been competent. I will use these works as a starting point to take a philosophical approach to develop a normative answer to the question of how we should make medical decisions for children. My focus will be on arguments - as this is the dominant paradigm in legal and medical ethics discourse about children and best interests - but it will also be informed by published empirical literature (from the appropriate domains, both medicine and the social sciences). This is an important area as is demonstrated by the way that treatment plans proposed for children are more likely to be contested. Its relevance is demonstrated by the increasing numbers of court cases deciding medical treatment for infants (the cases of Charlotte Wyatt, Luke Winston Jones and MB amongst others). But disagreement between clinical teams and parents may be more widespread. In a survey of the directors of all 31 UK PICUs, 21 forms were returned. The care was felt to be 'futile' ("will not achieve its physiological goals") or 'inappropriate' ("extremely unlikely to be of benefit, is extremely costly, or of uncertain benefit") in 21% of the 111 critically ill children at that time. [Arch Dis Child 90 Suppl II:A34-5]. If these findings are correct, they indicate either that many children are treated unnecessarily, and against their best interests (at best a waste of resource) or that the treating clinical team are unable to assess the child's overall interests.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE