Best interests in paediatric intensive care decisions: What can practical understandings tell us?

The best interests test is a key international standard that lies at the heart of ethical and legal approaches to making decisions about children. Although widely adopted, it has been subject to a bioethical critique that suggests the wider interests of the child’s family should play a larger part in best interests decisions. Others counter that, as the weakest party and the subject of the decision, the interests of the child alone should be given special priority.
In many nations clinicians now share healthcare decisions with children’s families, and in Europe this shared decision making approach is enshrined in law. It is thus important to reflect on the understandings of best interests operating in practice. This paper presents results from an empirical ethics investigation into such understandings in life or death decisions in paediatric intensive care.
In a three year project funded by the Wellcome Trust, empirical and theoretical work seeks to determine a concept of best interests that is both philosophically robust and practically useful in the treatment of infants without antecedent wishes in paediatric intensive care. The empirical investigation consists of 39 in-depth interviews with four key decision making groups in three UK hospitals While further interpretation is currently being conducted, emergent themes include differences in the degree to which the child’s interests are considered paramount or subservient to the family by different decision making groups, the way the physical appearance of the child is used in bargaining, the degree methods by which shared decisions are made represent consensus , compromise or the authority of clinicians or families and the independence of nurses and clinical ethics advisors within the decision making process. These early findings offer a platform from which to enrich current thinking about the validity of the best interests test and its practical implementation.