Deciding the child’s best interests: Principles and processes in intensive care practice

According to English law and professional guidelines, in life-or-death cases a child’s parents and doctors must agree on the best interests of the child when deciding for the child. Where they cannot agree, the courts should be approached to make an independent judgment of the child’s best interests. Little is known about the actual process of decision making, and relatively few cases are decided by the courts. Best Interests in Paediatric Intensive Care (BIPIC) is a Wellcome Trust-funded doctoral empirical ethics study, which has investigated the principles and processes of decision making, through in-depth interviews with parents, doctors, nurses and members of clinical ethics committees. In total 39 participants were interviewed across three clinical centres in semi-structured interviews lasting between 40 minutes and 3.5 hours. The interviews addressed participants’ personal experiences of decision making in paediatric intensive care, as well as the broader ethical values they applied in the process.

Analysis of the interviews showed a number of important areas of consensus and dispute, and provided detail about the process(es) by which agreements are made. For instance, interviews revealed a clear division between parents and professionals regarding the degree the child should be the sole consideration of the decision making process, excluding wider considerations of the family. Descriptions of the decision making process revealed it was heavily reliant on protraction, the physical deterioration of the patient and parental intuition. Interviews also suggested little confidence among participants that the judicial process could provide a satisfactory resolution to disputed decisions, as well as professional and institutional pride in solving difficult cases without recourse to the courts.

This paper presents these results in more detail, and suggests ways these processes can be addressed in future policy and practice.