The instincts of Charlie Gard’s parents should echo in courts

Few over the past few weeks can have been unaware of the plight of Charlie Gard. The peaceful face of this 10-month old has graced many a front page, as have the words and pictures of his devoted and determined parents. They have fought through the courts to be allowed to take their desperately ill child to the US for experimental treatment that they believe could have a chance of saving him.

All the courts in the UK, up to and including the Supreme Court, have said no. Now, their journey – and Charlie’s – appears to have come to an end with this week’s ruling from the European Court of Human Rights in Strasbourg. On Tuesday it upheld the decisions of the British courts and declined to intervene. One day in the not too distant future, Charlie’s life-support will be switched off and he will receive only palliative care for what remains of his short life.

As an outsider, taking what I flatter myself to be a rational perspective, I have no quarrel with these rulings. Some of the best qualified paediatricians in the land identified a rare genetic condition that doomed Charlie’s existence from the start.

There are countries where life support would have been withdrawn much sooner or never given at all. Other very sick children with a better chance of life, it might have been argued, had a greater claim to a finite and expensive resource. Charlie’s parents were entirely within their rights to challenge the doctors, but, quite simply, there was no hope.

And yet, and yet... I don’t think it is only Charlie’s winsome face or the very public anguish of his parents that leave misgivings. While accepting the final verdict, I have two questions to throw into the mix – questions that may simply have no answers but should at least be asked. The first concerns parental rights; the second, the state of public trust in doctors.

Charlie's parents, Connie Yates and Chris Gard wanted to take their child abroad for treatment they saw as a last resort. It would not have been any expense to the public purse. They had raised the £1.3m themselves. But money was not the point at issue. The judges had to rule on the welfare of the child. The judgment of the UK Supreme Court was that taking Charlie to the US would cause him additional and unnecessary suffering. The ECHR, also by a majority, did not demur.

England’s Children Act of 1989 – updated in 2004 – was hailed then, and is still regarded now, as a landmark piece of legislation. At its core is the principle that the child’s welfare is always, and in all circumstances, paramount. Where litigation is concerned, a child is required to have his or her own representation – an advocate who is separate from parents or guardian, and who argues in the interests of the child alone.

Where a child has been harmed, or is judged to be at risk of harm, that principle is unimpeachable. Nor is there anything wrong with the principle that a child should have separate legal representation. But does it make sense for a court to overrule the wishes of the parents of such a very young child – wishes of parents who so patently want their child to flourish?

One downside of the Children Act, or at least with its application, has been that it has made some parents wary of having any dealings with officials at all, lest their own view of their child’s welfare conflicts with that of the state. There have been instances where a request for help or a visit to A&E has turned into a contest for custody. Obviously, there are times when care orders are necessary, and there are plenty of examples where doing nothing has been more dangerous – even fatal – to the child than intervention.

But in this case? Should the parents not be allowed, at their own expense, to take what they see as that last chance for their child – even if, as seems to the rest of us inevitable, their hope turns out to be misplaced?

And for the parents, the welfare of the child here is not just a matter of medical judgment, it is also a matter of trust. There was a time when most of us would have been content to take those in authority at their word, but that trust – long gone in relation to bankers, politicians and, alas, journalists – has also been seeping away to an extent from medics.

This is partly because other (not always quack) sources of information are available, and partly perhaps because patients are more demanding, more aware of mistakes and readier to sue. This month the British Medical Journal reported that three-quarters of the babies stillborn or brain-damaged during labour could have been saved with better foetal heart monitoring. These truly horrendous figures concerned NHS hospitals in England in 2015. Add the notorious patient neglect at Mid Staffs, the incidence of hospital infections, and is it any wonder trust in the medical profession is not what it was?

Nor are patients always wrong in their challenges. In 2014 the parents of 12-year old Aysha King spirited their son from a Southampton hospital and took him to Spain and then to Prague for cancer treatment. The precise rights and wrongs of this case remain blurred; there was clearly a breakdown of trust between the family and the doctors. But the Kings – Jehovah’s Witnesses – had researched their options and insisted that Aysha would benefit from proton-beam therapy – tried and tested elsewhere, but unavailable in Britain.

Their argument was that proton beam treatment had less risk of side-effects for a child than standard radiotherapy. In the end, the NHS funded Aysha’s treatment in Prague. He is back at school, his parents say his cancer has gone, and – lo and behold – the UK’s first proton beam machine has just been delivered to Newport in South Wales, as a new study shows that this treatment is indeed less harmful to children with certain types of cancer.

So far, Aysha King’s story is a happy one in a way that Charlie Gard’s, alas, will probably not be, and their two conditions are anyway quite different. But the two cases both raise the same serious questions about what happens when doctors and parents clash over a child’s treatment, and whether – just sometimes – the parental instincts might have the edge over medical expertise.