Sharing decisions or sharing fictions? Deciding critically ill children’s best interests in practice

Context: There is a near consensus in European (indeed, international) law and medical practice that life or death decisions about children should be taken in their best interests, but this term is opaque, masking a variety of different values. Critically ill children lack the ability to contribute to their own best interests, and may lack antecedent wishes to inform a decision. Instead they rely on a shared decision between parents, doctors, nurses and sometimes ethics committees to decide their best interests.
Objectives: Although decision making groups may have different values and approaches to reaching a decision, this is little examined. The Best Interests in Paediatric Intensive Care (BIPIC) study has investigated the principles and practices used by decision making groups in England. Informed by this, the study offers insight into the values and approaches to shared decisions undertaken in practice.
Methodology: 39 experienced participants from the four decision making groups were recruited from three different paediatric intensive care units. Participants underwent in-depth interviews about their experiences and theoretical opinions. Interview transcripts were subjected to qualitative thematic analysis .
Results
Preliminary results indicate distinct differences in the values of participant groups, with parents seeing the paramount nature of the child’s best interests as inviolable, whereas professional groups were more willing to compromise the child’s interests in order to benefit the family. While some groups saw parental opinion as theoretically decisive, in practice it was widespread to view shared decision making as a public acknowledgement of the parents’ connection to their child, intended to manufacture assent to the professional view.
Discussion: These early results suggest the theoretical nature of both the best interests test and the concept of shared decision making fail to reflect the practical application. Although the parent participants were largely reflecting on collaborations with professionals in which they maintained good faith, there are potentially deleterious effects to the function of a system based on private understandings when good faith is absent . Is there a robust ethical solution to deciding the best interests of the child that takes account of understandings of practice?