Alfie Evans suffers from a progressive neurodegenerative condition that has left him in a “semi-vegetative state”. His treating hospital, Alder Hey Children’s Hospital, concluded that further treatment would be futile. His parents, however, wish to take him to Rome for treatment to see if his condition might improve. In February 2018, the High Court found the damage to Alfie’s brain was ‘catastrophic and untreatable’ and concluded that life-support should be withdrawn. His parents’ appeals to the Supreme Court and the European Court of Human Rights failed. On Monday, his life-support was withdrawn and yesterday his parents were refused permission to move him to Rome. However, as of Wednesday he is still alive and breathing independently. The Court of Appeal is due to hear a further appeal.
Alfie’s case is the latest in a series of disputes between parents and doctors over the continued treatment of very ill children. In this case, as in those of Charlie Gard and Isaac Haastrup, the same essential question has arisen: who should have the final say over a child’s medical treatment? In each, the court ruled that it has ultimate authority to make decisions about a child’s medical care. Some of the public response to these cases has been marked by outrage that the courts, rather than parents, have the final say in such cases. Opposition to this legal position rests on disagreement about the authority of the state to intervene in private, family matters. Given this, and the increasing attention these cases are receiving, the time has come for a full public debate about how to answer the question of who decides on behalf of a child who cannot speak for themselves.
In the Gard case, counsel for the parents argued that the law gives the court very extensive powers in relation to a child’s medical care. The state has long made decisions on behalf of potentially vulnerable people who cannot make decisions for themselves about their treatment, such as children and people who lack mental capacity. Generally, however, the courts intervene only when an intractable dispute arises between doctors and parents.
Should we continue to manage such disputes in this way? There are three main approaches we might take: retain the current system of ultimate court authority; move to giving parents the final say; or adopt an approach similar to that taken in relation to care decisions where parents have substantial decision-making power and the state can intervene only when a parental decision poses a risk of significant harm to the child.
In favour of parental authority is the argument that parents are best placed to make decisions for their children because they know them better than anyone. The decision may also affect the wider family, and parents are in the best position to weigh the competing interests of family members. They may also be in the best place to understand the other welfare considerations – emotional, religious, cultural factors – which must be balanced against the medical considerations.
The close relationship between child and parent can, however, be a double-edged sword. In such emotive, distressing circumstances, to ask the parents to decide objectively what is best for a child whom they cannot bear to lose may be almost impossible. Like Charlie and Alfie’s parents, we might all want to pursue even the tiniest chance, even when the doctors tell us it is futile and may even cause our child harm. In such circumstances, allowing the court to decide objectively from the outside may be best. But what is ‘best’ for a child? There may not be one right answer, so it might be reasonable to leave these decisions to parents, who arguably have as good a claim as the courts (if not more) that their opinion of what is ‘best’ is valid.
However, a child remains a vulnerable person in our community for whom, to some extent, we must all take responsibility. Therefore, perhaps we should moderate parental authority by limiting them to decisions that do not expose that child to significant harm, thereby balancing familial privacy and plurality of values with our responsibility to protect those in society who cannot protect themselves. This ‘harm threshold’ approach may be the right compromise.
Whether the slim chance of Alfie benefiting from treatment in Rome is worth risk and discomfort this would entail is arguably not a medical question at all. It is about what chances are worth taking and at what costs. We should question whether any one is clearly any better placed to provide an answer to this question than the parents. If it will harm him, he should be protected. If it will not, we need to consider why the state should have the authority to prevent these parents doing what they believe is best for their little boy.
Dr Imogen Goold is an associate professor at the Faculty of Law, University of Oxford
Cressida Auckland is a doctoral student at the Faculty of Law, University of Oxford