In the wake of the Evans case, there have been calls for changes to UK law. But what changes to law could or should be pursued? What would actually help?
A different solution would be to resolve disputes without recourse to court. A treatment tribunal model, as applied in Texas, applies an explicit process for assessment and arbitration in cases of potentially inappropriate treatment.8 This model has the advantage of potentially allowing timely decision making and avoiding costly and protracted legal appeals.8 (A modification of this model could help separate out important questions of limited resources from those relating to the interests of the patient9). However, this due process model also has its critics, who argue that it compromises patients' and families' legal rights.10 It would require substantive legal reform.
One question, debated in the Evans and Gard cases, is whether courts should reach decisions based on their view of what would be best for the child (the best interests standard) or on whether parents' preferred treatment would risk substantial harm to the child. Currently, courts apply the best interests test to medical treatment decisions. There are strong ethical arguments that decisions to over-rule parents should be based on the second, more stringent question.11 This may or may not have led to a different decision in either case; it would make legal decisions about medical treatment consistent with the standard applied to other types of decision.
A simpler legislative response to these cases would be to promote ways to resolve conflict at an earlier stage. One option would be improved access to clinical ethics consultation. Such consultation can provide a consistent process for dealing with conflicts. It can help identify the nature and source of disagreement. When there is reasonable disagreement about what would be in a child's best interests, parents' wishes should be respected.12 There is some evidence that provision of ethics consultation in intensive care can help resolve conflicts and reduce provision of non-beneficial treatment.13 In the UK, however, clinical ethics committees are available in only a minority of acute NHS trusts.
Paediatric medical care is, at its best, a partnership between professionals and families, working together to promote the wellbeing of children. These prolonged and painful disputes about treatment are devastating for families and traumatic for the medical and nursing staff. There are no winners, only losers.
There is a pressing need now for professionals to come together with families to explore and implement new constructive solutions to avoid, mitigate, and resolve disagreements about treatment. That would be in the best interests of all children.
Competing interests: We have read and understood BMJ policy on declaration of interests and have no relevant interests to declare. Both authors are supported by Wellcome grants.
. Medical futility and potentially inappropriate treatment. In: Youngner S, Arnold RM, eds. The Oxford handbook of ethics at the end of life.Oxford University Press, 2016.
. Medical futility statutes: no safe harbor to unilaterally refuse life-sustaining treatment. Tenn Law Rev2007;75:1-81.
. Futility determination as a process: problems with medical sovereignty, legal issues and the strengths and weakness of the procedural approach. J Bioeth Inq2011;8:155-63. doi:10.1007/s11673-011-9297-z .
. Ethics, conflict and medical treatment for children: from disagreement to dissensus.Elsevier (forthcoming).