Alfie Evans and Charlie Gard—should the law change?
- British Medical Journal
- May 4, 2018
- 3 min read
Professionals and families need to work together
In the early hours of 28 April 2018, 23 month old Alfie Evans died in Liverpool’s Alder Hey hospital after a prolonged dispute over his medical care. Alfie had a severe neurodegenerative disorder and had been ventilated in intensive care for much of the preceding 16 months. His parents wanted life support to continue, but Alfie’s doctors believed that this would be futile; in late February, the High Court ruled that life sustaining treatment was not in Alfie’s interests. Subsequently, a series of (unsuccessful) appeals were heard by the Court of Appeal, Supreme Court, and European Court of Human Rights.
The final stages of the dispute about treatment for Alfie were accompanied by intense national and international scrutiny. Many drew parallels with the case of Charlie Gard, less than a year earlier. International commentators and politicians were critical of the UK health system and judiciary and its perceived interference in parental decision making. At the height of the conflict, staff at Alder Hey hospital reported unprecedented levels of abuse.
What would help?
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?
Disagreements about potentially inappropriate medical treatment are not unique to the United Kingdom. Many jurisdictions have struggled to find satisfactory legal responses to the problem of so called medical futility. Although the recent cases have been criticised, the UK approach compares favourably with others in its transparency, rigour, and consistency.
One option would be to respect parental autonomy—allowing parents to be the final decision makers about medical treatment. Such a solution would avoid legal disputes. However, it would also come at considerable cost. It would require health professionals to continue to provide treatment even when it would cause substantial harm to the child. It would also, by consuming limited medical resources, compromise the ability of health professionals and the health system to treat other children and distribute resources fairly.
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. This model has the advantage of potentially allowing timely decision making and avoiding costly and protracted legal appeals. (A modification of this model could help separate out important questions of limited resources from those relating to the interests of the patient). However, this due process model also has its critics, who argue that it compromises patients’ and families’ legal rights. 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. 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.
Act earlier
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. There is some evidence that provision of ethics consultation in intensive care can help resolve conflicts and reduce provision of non-beneficial treatment. In the UK, however, clinical ethics committees are available in only a minority of acute NHS trusts.
Another option would be to offer independent mediation. It involves a neutral external facilitator who aims to help parties reach a negotiated resolution that they can both accept. After a pilot training programme, paediatric staff reported greater ability to recognise nascent conflicts and to manage and de-escalate conflict.
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.
