When I was nine years old, I spent almost a year of my brief life in Alder Hey hospital, Liverpool, being cured of tuberculosis. The care and treatment I got from the doctors, nurses, and stern matrons of those days was of the highest quality then available, and I’m grateful for it still. Not only did it cure me, but it meant I never developed a fear of hospitals that afflicts some people. My time in hospital also gave me a lifelong addiction to reading.
So I’ve paid some attention to the case of Alfie Evans, the little boy whose brain has been largely destroyed by a mysterious illness and who as a result is dependent for his continued life on feeding and breathing machines in the same hospital. That life seems likely to end in the next few days because a succession of British and European courts has refused to allow his parents to remove him from Alder Hey to receive further treatment either at home or in an Italian hospital that would continue treating him. The last legal twist was delivered earlier today when the European Court of Human Rights declined to hear a final appeal from the parents. That meant that a judgment of the U.K. Supreme Court of three days ago will stand, Alfie will remain at Alder Hey, the machines keeping him alive will be turned off, and Alfie will die quite soon.
The final judgment of the U.K. Supreme Court can be read here.
It’s short summary of the history and legal facts of the case, clearly written, and worth reading. Much of it is generally agreed on by all parties — the parents, the courts, the doctors treating Alfie, and the hospital. For instance, it is “a desperately sad case.”
But there are two important points that need unwrapping. The first is that, as the courts say in several ways, the interests of the child, Alfie, should be “paramount.” That is said to be the “gold standard” of judgment concerning cases involving minors, whether a custody settlement in a divorce case or a dispute over the child’s medical care as here. This gold standard is the rule not only in the U.K. but also in Europe and internationally, which, the court says, strengthens the force of its decision in this case.
An obvious problem with this argument, however, is that Alfie is both a minor and incapable physically of judging his own interests. Until quite recently — indeed, I think it may still be listed in the Universal Declaration of Human Rights — the parents had the right to determine what was in the best interests of the child. Confronting this right in its judgment, the court pointed out that the Custody of Children Act in 1891 had severely qualified this parental right (and, incidentally, obligation). The courts would not give a parent full custody, for instance, if he had abandoned or deserted the child or conducted himself in some way as to show him to be a danger to the child. That legal change was later strengthened by other Acts of Parliament with the overall result that the state now ultimately exercises parental power over the child while, so to speak, leasing out that right to the actual parents on a day-to-day basis. This “gold standard” of the “paramount” interests of the child is the basis, for instance, of the intervention of the courts to prevent parents, usually for religious reasons, from refusing blood transfusions needed to save a child’s life.
That is not what’s happening here, however. It is Alfie’s parents who want to continue the medical services that are keeping Alfie alive, and it is the courts that insist on switching off the machines. The court says so explicitly in relation to earlier court decisions in the clearest possible way: “It had been decided, after careful examination of the evidence, that it was not in his best interest for the treatment which sustained his life to be continued or for him to be taken by air ambulance to another country for this purpose.” And it is far from clear that the court’s decision is in Alfie’s interest or that it should be the court’s decision at all.
After all, the court itself concedes that Alfie’s actual parents are good and loving parents. They are not the brutal, cold, or neglectful parents who were the justification for transferring parental rights to the courts in 1891. On the contrary they have made heroic efforts to find other doctors and another hospital that will treat their child — and they have succeeded. Why should not they, rather than judges or doctors, be the best judges of Alfie’s paramount interests?
And that question gains greater force from the court’s decision. It is, after all, a death sentence. What is it saving Alfie from? He does not appear to be in pain. Removing Alfie to an Italian hospital would not deprive other young patients in Alder Hey from benefiting from the medical treatments he currently receives. The reason seems to be that both court and doctors feel he will never recover or live without the permanent help of advanced medical assistance — and that keeping him alive for longer is thus essentially pointless.
This argument is not absurd, but it is not compelling, either. Most people would agree that whoever has the responsibility for looking after Alfie is not morally obliged to maintain heroic medical measures indefinitely. Surely, however, they are entitled to do so if they wish. And Alfie’s parents wish to do everything to keep their son alive as long as they can in the hope, I suppose, of a miracle. It should be their decision, not that of judges, however distinguished, or of doctors, however skilled.
An update on Alfie’s case, here.