The tragic case of Charlie Gard, an 11-month old baby suffering from a rare genetic condition, has divided the nation. In January, doctors at Great Ormond Street Hospital advised that Charlie, who is currently being kept alive with a ventilator and feeding tube, had such a small chance of recovery that there was little more they could do.
Despite fighting numerous court appeals, his parents have been prevented from taking their son to the US to receive an experimental therapy. Judges have consistently supported the opinion of Charlie’s doctors: that his medical care should be withdrawn, to allow him to ‘die with dignity’.
Their judgement states that it is in Charlie’s ‘best interests’ to die rather than to continue living in his current state. Although the idea that death could be in somebody’s ‘best interests’ may seem counterintuitive, it is surprisingly common in modern medicine. Similar decisions are made in hospitals across the country every week, including the withdrawal of life support and decisions to not attempt resuscitation.
The doctors are also right to be sceptical about the experimental treatment being proposed. Although nucleoside therapy has benefited other patients, it has never been shown to reverse the extent of brain damage Charlie suffers from. Even the US neurologist offering the experimental treatment admitted that Charlie was unlikely to benefit from it.
So far then, Charlie’s case is tragic, but as far as medical decisions go, not particularly contentious. What makes the case remarkable is the vigorous rejection of doctors’ opinions by Charlie’s parents. Despite their efforts however, they have been prevented from withdrawing Charlie from Great Ormond Street Hospital to seek medical care elsewhere.
This issue about parental autonomy, rather than the debate about whether it is right to keep Charlie alive, is what makes the case so contentious. Hidden beneath the emotive arguments made by both sides lies an ethical precedent in the court’s ruling that has consequences far beyond Charlie’s care.
The courts have reached two judgements; that it is in Charlie’s ‘best interests’ to die and that his parents lack the right to remove him from hospital to seek medical care elsewhere. Now, imagine that assisted dying legislation is introduced into UK law, which many medical experts expect to see in the near future.
The natural conclusion from the precedents set by the courts is significant. In keeping with the recent ruling, doctors would be justified in undertaking euthanasia procedures for children in whose ‘best interests’ it was to die, even in cases where their parents objected.
The case of Charlie Gard effectively amounts to a justification for passive euthanasia – the withdrawal of medical treatment with the purpose of ending life – against his parent’s wishes. In making the case for doing so, the courts have unwittingly created a precedent for defending other steps – including active euthanasia were it to be legalised – against parental wishes. It follows then, that such a practice would be justified as soon as assisted dying is legalised and deemed ethically permissible.
This isn’t to cause unnecessarily alarm. The most recent attempt to introduce assisted dying legislation in the UK skirted the issue of parental responsibility completely, and the bill failed to mention end-of-life care of children at all. Nonetheless, in countries where adult euthanasia laws have been introduced, such as the Netherlands, similar measures for children have followed soon after.
The natural conclusion of the arguments made by euthanasia campaigners – that there is no ethical difference between ending someone’s life by withdrawing treatment compared to by administrating a lethal agent – certainly makes such outcomes realistic.
Of course, it might be that society deems it acceptable to permit the active euthanasia of children against their parent’s wishes. However, the vociferous reaction to the Charlie Gard case makes this seem unlikely. As we return to debating the possible introduction of assisted dying legislation in years to come, the case of Charlie Gard – which has resonated across households and provoked comments from figures including the Pope and US President – will prove to be highly significant. It would be wise then, for doctors and judges to be prudent of the consequences that follow from the arguments they make in the public sphere.