The overseas reaction to the case of Alfie Evans has been quite striking. It’s not that the NHS treated him poorly, or that anyone seriously believes that the 23-month-old boy could have recovered from his brain damage. The shock comes from the fact that English law can define the ‘best interests’ of a child as dying, overruling the parents who wished to take up the offer of treatment at a hospital in Rome. This Bloomberg article sums up much of the US reaction:-
“‘It really is this simple. The British state has decided that it is the baby’s best interest to die, and it is trying to ensure that he dies expeditiously. It is overriding parental rights in the process.’
This article was retweeted by Jeb Bush, former governor of Florida, who added:-
“‘What the British government is doing to Alfie Evans and his family is almost unbelievable. Why aren’t US liberals outraged?’
I looked at Alfie’s case in my Daily Telegraph column yesterday. It is not, as some Americans are suggesting, the fault of state-run healthcare. No doctor, even the ones hired by the family, has suggested that Alfie’s brain would have recovered. But all those involved were plunged into a bitter and unnecessary drama by bad law, hence the awful situation with protesters outside the hospital, by no means all of them fully-appraised of how hopeless Alfie’s situation was. There has been some deplorable behaviour and insults hurled at staff of the very hospital that kept Alfie alive for so long.
The NHS doctors and judges acted with professionalism, behaving in a way set down by Parliament. It’s not clear that the judge had the freedom to disagree with the doctors, raising questions as to why we went through the charade of a hearing in the first place. As Lady Hale put it when refusing the family permission to appeal to the Supreme Court: ‘A child, unlike most adults, lacks the capacity to make decisions about future arrangements for themselves. Where there is a dispute, it is for the court to make a decision.’
This is the law, and it needs to be reformed for such cases like Alfie Evans and Charlie Gard - cases which will become more common as medical technology develops to keep children alive for longer. The ‘best interest’ test was intended for cases where the parents were contesting beneficial treatment – Jehovah’s Witnesses objecting to blood transfusions, for example. It quite righty protects children from being taken out of proper care and handed over to quacks. But the law never envisaged the situations we are now seeing, where the NHS wishes to terminate care and the law is used to stop the parents from seeking other solutions - usually from overseas. In Charlie Gard's case, it was an offer from a hospital in New York. In Alfie's case, a hospital in Rome and also one in Munich. In both cases, a judge ruled that such treatment would be futile - so the ‘best interests’ lay in ending life support and allowing the child to die.
I don’t disagree with the judge's decision that further treatment would have been futile. Given the irreversible damage to Alfie's brain I don't see what any hospital could have done for him. But it’s not my child, or his. Alfie’s parents were looking for a miracle. The question is: should they have been free to do so? If the NHS could do no more and if (as the doctors said) Alfie could feel no pain, what harm would have come from a trip to Rome? If the NHS had allowed that trip, would anyone have thought the decision cruel or morally questionable?
That's why the law ought to be amended for these very rare cases: when the "best interests" of the child is defined the courts as death, but the parents seek a last shot at life.
To those who see the court's right to decide over a child's "best interests" as sacrosanct, this will seem like a regressive idea. To those who consider parental rights absolute, it won't be enough. It's for Parliament to take a decision, and ask if a compromise for such rare situations might well spare everyone - patents, hospitals, judges - from the needless drama that we have now seen twice in two years. And that, without reform, we are certain to see again.
There is, of course, a limit to how far a publicly-funded healthcare system should go to treat the terminally ill. As the moral philosopher Peter Singer once put it, "to spend more money on long-term care for a patient with no prospect of recovery means less money for patients with better prospects". But he did not see an objection to patients being kept on life support at private expense. And that's what we're talking about here.
When I wrote my Daily Telegraph column I was unaware of the work done in this area of the law by the parents of Charlie Gard, who died in London last year just before his first birthday. They have been liaising with medics and lawyers to draft a ‘Charlie’s Law,’ designed to stop the prolonged agony of parents in such situations. They released a statement yesterday, that I think is worth reprinting at length:
“‘Since Charlie’s passing in July last year, we have been working with paediatric consultants, medical ethicists, senior lawyers, U.K. politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals. This involves addressing problems around the “best interests” test as well as creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts. Once cases are public it is difficult for people to be fully aware of the complexities and this often leads to ill-informed judgments on both sides and creates unnecessary conflicts.
‘We have something that is better for everybody - hospitals, healthcare professionals, families with sick children, the NHS, and the reputation of our own government. We would ask those pushing for law change to take account of the careful work already done, and join us as we continue to push for a solution that is best for all involved.’
Charlie’s Law, Alfie’s Law – the name doesn’t matter. What matters is that Parliament now discusses whether the law needs to be updated for these rare, tragic cases when the NHS can do no more. As Charlie Gard's parents say, some legal clarity would be better for everybody.