An open letter about Charlie Gard to House Speaker Paul Ryan

Dear Speaker Ryan

Like many of your fellow countrymen and women, you have been following the heart-breaking case of Charlie Gard, the little baby who is desperately ill with mitochondrial disease in London’s Great Ormond Street Hospital. Despite a ruling from our highest courts that doctors would be acting lawfully if they turned off the ventilator which is keeping him alive, a tiny flame of hope continues to flicker. Charlie’s remarkable parents refused to concede that his condition was hopeless and – despite having had the legal authority to stop treating him – his doctors have in fact continued to keep him alive.

The Family Court has now agreed to re-examine the case in the light of possible fresh evidence. The latest development is that Dr Michio Hirano, a neurologist and specialist in mitochondrial disease from Columbia University, will examine Charlie at Great Ormond Street tomorrow. Dr Hirano has been very cautious. At best he gives about a 10% chance of his treatment being effective, and even if it does work to some extent it may not produce much improvement. Charlie has suffered brain damage and even Dr Hirano is not optimistic that that can be reversed. The odds are still against him surviving and even more against him improving but we all hope, and those who share your strong religious faith will pray.

You have tweeted about the case. As Speaker of the House of Representatives your tweets are seen by millions. There is no problem with that. It is a good thing to contribute to the discussion about our healthcare and legal systems. No doubt there is a great deal that we can learn from each other about our respective medical and legal systems. We are some way off perfection in both, as (if you will forgive me for saying) are you. But I am just a little concerned that in your rush to support Charlie’s parents you may have inadvertently overlooked some of the complicated issues that the case has highlighted.

You tweeted this:

I stand with #CharlieGard & his parents. Health care should be between patients & doctors—govt has no place in the life or death business.”

We would all like to stand with Charlie Gard and his parents. Even if I’m not quite sure what “standing with” them actually means in practice, your generous sentiments are quite clear. Nobody would disagree with you that wherever possible it is doctors and patients who should make decisions about medical treatment. Unfortunately – and this is the first point that you may have overlooked – Charlie is not in a position to participate in any such decision.

But your reference to “government” left me feeling most uneasy. It seemed to imply that our government was in some sense standing in the way of Charlie getting the treatment he needs, or even that it was in some way trying to bring about his death. Perhaps you didn’t mean that – it is easy to over-simplify in 140 characters – but if you did you are not alone. Judging by social media, lots of your compatriots believe that our government has decided that Charlie should be allowed to die, or even deliberately killed. Others blame what they disparagingly call a “socialist” medical system, our National Health Service.

But if you do in fact think our government is trying to influence what happens to Charlie, then with the very greatest of respect you are wrong. Apart from providing a court and a judge it has played no part whatever in the case. It is true that Great Ormond Street Hospital – a world-renowned centre of excellence for treating sick children – is partly funded by the state, but that does not mean the government has any say over its doctors’ clinical decisions. It is not a party to the case, it does not care who “wins” (although it makes little sense to talk about “winning” a case like this), and if the Minister for Health told either a doctor or a judge what they should decide in any particular case, they would very firmly tell him to mind his own business (and a United States politician trying to do it would probably elicit the same response). The point is that our government, will not, would not, has not and cannot interfere in the case at all.

As you say the government has no place in the “life or death business.” If you mean that government should never make clinical decisions, then we can certainly agree. If you mean that government should never make money available for medical care, then we don’t agree.

But let’s not get distracted in arguments about who should be paying for medical care. It is irrelevant to Charlie’s case, partly because shortage of money has never been an issue in his treatment, and partly because in any event his parents have raised enough money for him to be treated privately in America should that ever be necessary.

Let’s come back to your point that “health care should be between doctors and patients.” Unfortunately – and again it’s probably the fault of Twitter’s space restrictions – this admirable principle doesn’t take us very far and it certainly doesn’t help us answer the question of what should happen in Charlie’s case. Charlie doesn’t have a view, and even if he did he could not make it known. We can assume, I suppose, that if he were able to talk he would probably say that he did not wish to be in pain, and that he would like his condition cured if at all possible.

What I think you mean is that in cases involving young children like Charlie “health care should be between doctors and parents.” And again, that is a fine principle most of the time; but it doesn’t work once doctors and parents disagree about what treatment should be given. (Of course it sometimes doesn’t work because parents disagree between themselves about what should happen, but at least that’s not a complication in this case). Who should then make the final decision: doctors or parents?

How should we resolve a dispute when parents and doctors disagree about treatment? In 99% of cases this doesn’t arise. Both doctors and parents want children to be cured, or if a cure is impossible at least to have the best possible life. Doctors do their best to advise on what treatment is best, bearing in mind the terribly difficult dilemmas that medicine has a way of producing: just as an example, is it always worth putting a baby through months of painful chemotherapy in order to buy a few precious extra months of life, or is it sometimes better to let that baby die in as painless and comfortable a way as possible? Even where there is no easy answer doctors and parents are usually able to agree in cases like these.

But not always, which is the problem here. What happens when the parents’ view is that treatment should be provided when in the view of the doctors it is simply not in the child’s best interests to have treatment? And what happens when – as may turn out to be the case here – even doctors themselves do not agree?

This, surely, is when the law has to become involved. I really don’t know what your alternative would be. I am sure you have thought about it, and if there is an alternative to a court deciding then please do tell us. It would be a very useful contribution to the debate.

However, assuming the dispute must be resolved legally, the question then arises: how should courts decide these dilemmas? It is no good wringing our hands in anguish, or sniping at the bona fides of the doctors; somehow a decision has to be made.

Judges cannot just decide each case on an ad hoc basis, or apply different principles to each case. The essence of the common law system which our countries share, is that rules are laid down by statute or precedent, and those rules must then be followed. What should the rules say about a case where parents and doctors disagree?

Life at all costs?

One answer might be to say that because life is so precious the courts should always choose the option that prolongs it as long as possible. A person might hold the view that all life is sacred, therefore every possible effort must be made to prolong it, however painful and onerous that life might be.

That is close to the position of the Roman Catholic Church (to which I think you belong), but it is not quite the Church’s position. Pope Francis has offered to help, and stressed in a tweet that is not quite as unambiguous as it at first seems:

To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.

Catholic doctrine, as explained in John Paul II’s evangelium vitae, regards euthanasia – deliberate and intentional mercy-killing – as a sin, but it distinguishes euthanasia from:

… the decision to forego so-called “aggressive medical treatment”, in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family. In such situations, when death is clearly imminent and inevitable, one can in conscience “refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted” …. It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement. To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death.”

So a rule of law that says doctors should always continue treatment to extend life as long as possible is not demanded even by the Catholic Church. John Paul saw the cruelty in forcing patients to endure a “precarious and burdensome prolongation of life.” It is not the law either here or in your country, and I very much doubt that you think it should be.

Parents should always have the right to choose?

Another possibility would be a rule that the parents should always be the people to make the final decision. This is a principle that your Republican colleague & former Presidential candidate Senator Ted Cruz supports. He too has jumped on what looks a bit like an anti-government bandwagon, tweeting:

No hospital, no gov’t has the right to deny parents their chance for a medical miracle. I stand with #CharlieGard.”

Fox News Presenter Tucker Carlson thinks the same:

The parents of #Charlie Gard should be able to decide his medical care.”

Yet a moment’s thought makes it clear how wrong such a rule would be if it was applied inflexibly. Children would lose their individual rights and become mere chattels of their parents. In almost all cases parents want to do the best they can for their beloved children, but sometimes they can be wrong. A loving parent might, for example, wish to refuse treatment on religious grounds – say a life-saving blood transfusion in the case of a Jehovah’s Witness. Can it really be right that in those circumstances the religious wishes of the parents should over-ride the child’s right to life?

Or sometimes the boot may be on the other foot and parents may wish to insist on treatment that simply cannot succeed; an operation, let us say, to remove a tumour when it would be futile because the cancer has spread throughout the body. Should the courts force a child to undergo objectively pointless treatments simply because the parents insist? I cannot believe that is really what you think.

Parents should choose unless child will be caused significant harm by their choice?

There is more difficulty when medical opinion is divided. Perhaps where there is uncertainty about the medical position, the parents should be entitled to choose between the various medical options. The parents, if you like, would have a casting vote. It is certainly a more defensible position than giving the parents the right to do whatever they want with their children. No doubt in many cases, faced with two or more reasonable alternatives, allowing the parents to choose is very sensible. At the very least, everyone agrees that the parents’ view should be given great weight.

When Charlie’s case was appealed, his parents argued that unless he would thereby suffer “significant harm,” the court should allow them to take him to America for treatment. The judges decided that even if a likelihood of “significant harm” was the legal test to apply (and they left the question open), it was in fact satisfied because keeping Charlie alive for a treatment with a “vanishingly small” chance of recovering meaningful brain activity would be likely to expose him to continuing pain, suffering and distress if he was kept alive to endure the treatment.

Best interests of the child?

In any dispute involving a child’s medical treatment, the duty of an English or Welsh court is to choose the course which, in the view of the judge, in the child’s best interests. Ultimately, that issue trumps all others.

This is the test that the courts must apply in England, and it has two advantages. First and most importantly it puts the child – the person most affected by the decision – at the centre of consideration. Secondly, it is simple to understand, if not always simple to apply.

You probably have not had a chance to look at the “position statement” filed by Great Ormond Street Hospital for the purposes of the latest litigation. If you have a moment please do. It explains the position of the hospital far better than I could. This is what the hospital says about its philosophy of putting the child’s interests above those of all others including, on occasion, even parents:

A world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients.”

I don’t know whether it would be best for Charlie’s treatment to be ended, and I am afraid I rather doubt that you do either. I was not persuaded by our judges’ argument that Charlie should be allowed to “die with dignity.” Given his young age, apparent lack of consciousness and his parents’ obvious wishes the rather nebulous concept of “dignity” doesn’t really deserve to be put into the equation at all. What matters is not his dignity but whether he is suffering, and whether that suffering will continue for no good reason if the treatment is attempted.

On the other hand I was convinced by those parts of the judgments which found that the prospect of successful treatment was in effect zero, while the chance that he was suffering was significant; but if there is new evidence it is obviously right that the court should look at the case again. Quite rightly it has agreed to do just that. Perhaps there is a chance that Charlie can be kept alive artificially, free from any risk of pain. If so, and if there is a small but real chance that the treatment may produce some meaningful improvement it would be right for the judge to change his mind. If not, and if the chances of a significant improvement in his condition remain “vanishingly small” then I would agree that the time has come to withdraw his treatment. Whatever the views of his parents, his best interests do not require what John Paul II would regard as “a precarious and burdensome prolongation of his life” to pursue treatment that will almost certainly make no difference.

So finally, just to re-emphasise this Mr Ryan, Mr Cruz and Mr Carlson: I am sure you want to be helpful, but if you are going to comment about a case like this you have to be particularly careful with your facts so that you don’t accidentally mislead or over-simplify. It is an agonising case to be sure, and it is inevitable that people of good-will will have different views on what its outcome should be; but some things that you may have inadvertently implied are simply not true. Our government is not trying to kill Charlie; our doctors, who have dedicated their lives to treating thousands of children, are not doing the government’s bidding by trying to kill Charlie; and of course nobody with the slightest knowledge of our legal system thinks that our judges, as they wrestle with an intensely difficult and emotional case, are the government’s stooges.

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