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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. 1 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. 1
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. 2 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. 3
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. 4 Many jurisdictions have struggled to find satisfactory legal responses to the problem of so called medical futility. 5 Although the recent cases have been criticised, the UK approach compares favourably with others in its transparency, rigour, and consistency. 6
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...