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.
78 thoughts on “An open letter about Charlie Gard to House Speaker Paul Ryan”
There are arguments both ways as to what the wise decision is. The question as to who should make the decision is simple.
Patients themselves (or their next of kin when they lack mental capacity) should be allowed to make the informed decisions whether or not to try to any experimental, controversial treatments on offer. Not the doctors, in Charlie’s case, or the General Synod of the Church of England in the case of so-called Conversion Therapy.
Does it follow from your comment that you would support the decision of a parent to withhold treatment, such as a blood transfusion for the child of a Jehovah’s Witness?
I would support the decision of a JW not to consent to a blood transfusion, UNLESS a blood transfusion was NECESSARY in order to prevent death or serious harm. In those facts, which are nothing like Charlie Gard’s facts, or (as I quipped) nothing like the facts surrounding patients who want counselling to deal with the stresses they experience when resisting unwanted attraction towards homosexual behaviours, it is a well-trodden path. The doctors, and the courts, are balancing a child’s right to life, against the JW parents’ scruples. It is obvious which right trumps the other. No such issues arise in either of the two case that I have compared, because they were in the news at the same time.
Incidentally, if I was Charlie’s dad, and Dr Michio Hirano said that he thought that there was only one chance in a thousand that Charlie would recover his lost brain and other tissue if the therapy reversed the mitochondrial condition, I’d still want Charlie to be used as a “guinea pig”, in the quest for a cure, even if that cure came too late to save Charlie. It’s not much of sacrifice if Charlie is so ill and so brain-damaged that he cannot feel any discomfort.
Sounds like you are or would be an awful parent.
Sacrifice your child on the altar of medical progress? What the hell are you thinking?
Parents are mostly, but not by any means exclusively, the best judges of the best interests of their child. Many parents mistreat their children; many parents cause serious injury to their children. Some parents kill their children.
Occasionally, doctors and nurses deliberately kill children (there are cases in the US and in Europe).
But there has never been a case of a court of law deliberately killing a child. Oh, well – not in the UK. Of course in America death sentences for teenagers are not rare.
Yes it does as long as the child was in agreement or incapable of making an informed decision. That child has a right to choose how he lives and dies without secularist imposing their religious views on him in violation of the UN rights of the child. I would no more deny any human that right than I would force slave labour by surrounding buildings with safety nets to stop slaves from deciding death was more favourable option. GOSH nor the legal system has no right to impose fascist ideologies on people.
So in all cases, the parents should be allowed to choose? Even if medical advice overwhelmingly says this will do harm? Astonishing.
“So in all cases, the parents should be allowed to choose? Even if medical advice overwhelmingly says this will do harm? Astonishing.”
What do you mean, “so”? Is that what I implied? Or is that a “straw man” overstatement of my actually position?
We know that the status quo isn’t doing Charlie a lot of good. He is being kept barely alive. He is no use to anybody, already halfway to brain-dead by some accounts. He will soon die, unless he is used as an experimental test subject, in the search for a cure for his mitochondrial deficiency, and a cure is discovered, and there are new and surprising lessons to learn about the repair of organ damage, in the very young.
I haven’t read about this case enough to know what Dr Hirona plans. But if (say) it were possible to repair the flawed mitochondrial DNA in one cell of Charlie’s, and to culture stem cells galore from that, and to seed these abundantly all over Charlie’s body, including in his CNS, might this not enable Charlie to develop into a normal, healthy, full-term baby, late, the way most of us develop when we are still foetuses?
No. It would not. Pity.
I am not a student of science these days, and I didn’t do any biology at school, or beyond foundation level at the OU, so I’ll have to take your word for that. But I do know that injecting stem cells (which I *think* are undifferentiated cells like I had when I was just a little zygote) into my gums, may well enable me to grow replacements for the teeth I have lost. So I was guessing that the therapy proposed used genetic engineering, and then implantation of stem cells, for them to multiply and differentiate, replacing Charlie’s body one cell at a time.
Do you know what the proposed therapy actually is, given that it’s not that, because (as you say) that wouldn’t work?
Medical professionals at GOSH aren’t infallible.
Baby Ashya is now free of cancer, no thanks to the NHS which blocked him from getting treatment abroad. His parents ignored the court order and took him anyway. They were arrested and spent some time in jail – but it was worth it.
James, you are mistaken about the Baby Ashya case. Ashya wasn’t treated at GOSH, of course, as I suppose you know, but at Southampton General. Our negligent journalists gave us to believe that doctors had given up on Baby Ashya and were expecting him to die and were offering nothing but palliative treatment. All nonsense, of course – they were fully expecting him to recover when given radiotherapy at Southampton General. His parents insisted that he should be given proton therapy and when the doctors refused to fund it (because it wasn’t available on the NHS and conventional radiotherapy was just as effective in Ashya’s case) the parents stole him from the hospital and went abroad, so that he could be treated in a hospital where his medical records were not available by a team of clinicians who didn’t know him. The parents were reckless and irresponsible and fully deserved to be arrested and detained. Ashya got his proton therapy and made a good recovery, just as he would have done at Southampton. It isn’t a story about parents being right and doctors being wrong. It is a story about parents reading stuff on the internet and deciding that they know better than doctors, and putting their child’s life at risk by removing him from the clinical team who were looking after him very well in England.
Thanks Jon. Just to clarify, “Medical professionals at GOSH aren’t infallible” was a standalone statement. As you’ve pointed out, Ashya was under Southampton Hospital’s care.
I still think we can be a little wide-eyed about NHS doctors. There’s no other industry I know where there’s such an uncritical acceptance of what they say. We’re even territorial about it too. We’re much more sceptical of outsiders (even with more expertise), who aren’t offered the same admiration.
I would firmly discourage any uncritical reliance on the advice of doctors, because over the years I’ve seen and read about many examples of medical negligence and medical malpractice. But when the clinical team in charge of a patient’s treatment consists of several well-qualified clinicians with proven expertise in the topic, pooling their knowledge and experience, the likelihood of mistakes is much less. To pit against that the view of a doctor in America or Germany or Italy willing to offer experimental treatment, or the views of thousands of amateurs on the Internet, is to abandon science and to substitute superstition and wishful thinking. And yet even that would be okay if there was a chance of reversing the serious organic damage that has already occurred. If Dr Hirano says “my proposed treatment probably can cross the blood/brain barrier and may possibly halt the progress of the disease” then the GOSH team are entitled to regard that as a credible argument. If he goes on to say “it might even cause dead brain cells to come alive again” they are entitled to apply their own knowledge of medicine and to say that he is not being scientific.
At the time of writing we don’t know exactly what he says or what the latest scans reveal and presumably all will become clear when the judge gives his further judgment.
Should I have the right to choose trepanning or bloodletting for my child? Should I have the right to choose exorcism or crystal healing over anti-epileptic medication or insulin therapy for my child? Should I have the right to beat the evil out of my child?
Article 3 of the UN Convention on the Rights of the Child enshrines the principle that the well-being of a child has precedence over all other factors, including the wishes of their parents. Where the decision of a parent is not in the best interests of their child, the state has a legal and moral obligation to intervene. The UK has ratified this convention, as has every nation on earth apart from the United States.
“Where the decision of a parent is not in the best interests of their child, the state has a legal and moral obligation to intervene. The UK has ratified this convention …”
Oh dear. If what you say is true, then I suppose you have hit the nail on the head. No wonder we are in so much trouble! Oh dear, oh dear, oh dear!
When I was about ten years old (in about 1963) I read the earlier 1959 UN Declaration on the Rights of the Child, and thought it pretty neat. More than fifty years later, history not having gone my way in the interim, I took from this Declaration my manifesto as a single-issue Parliamentary candidate in 2015. QV here:
But as for the Convention, the much later document that nation states eventually ratified? The Convention diluted the commitment to the family that characterised the Declaration.
John Stuart Mill was once a leading light in liberalism/libertarianism. And a better writer than your or me, I think. Although Mill backtracked somewhat in his later years, when he “got saved” (i.e. became an evangelical Christian), his early writings (e.g. On Liberty) are thought-provoking and contemporarily relevant, I suppose because God endowed John with a sharp mind.
The general theory, of Mill’s liberalism expressed in On Liberty, was a bit socially Darwinistic, before Darwin. Mill thought (back then, before his conversion to Christ) that we ought to put up with, or even to celebrate diversity, because there was (so Mill then thought) no objective standard of right and wrong – and on the off-chance that, with all this freedom floating around, some weirdo dissidents might occasionally stumble upon something even better than what we already had. That (at least, to me) seemed to be the general gist of On Liberty, when I read it, almost 40 years ago.
Mill hoped that society could evolve, by the natural selection of what Dawkins eventually dubbed “memes” (meaning ideas). Thus thought the young Mill, before there was even a word “genes” that Dawkins neologism mimicked, and before Mill became a Christian.
It strikes me that the entire process of evolving better ethics that Mill envisaged (in his liberal years), would be be bound to be greatly impaired by all and sundry signing up to a Convention requiring the virtual nationalisation of the decisions parents used to take, as to what was in their children’s best interests.
It has taken a test case in which the state wants to kill a child whom his parents want to be cured if possible, and your simple comment on this, to bring all this home to me afresh. I go to bed tonight reminded afresh that my children are not mine after all, they are the states. Thank you.
As anything more than the most simplistic black and white thinking seems to be beyond you, I’ll try to explain it carefully so you understand. A child is a real person with their own rights. Not the states, and not the parents. If the parents are not acting in the child’s best interests, the state can step in to protect the child. Do you understand this, or is it merely bouncing against those massive control issues you seem to have? Your poor kids. I can only imagine how awful it must be for them to be stuck with a creepy, not very intelligent father who sees them as objects he owns and should be able to do whatever he wishes with, regardless of how it harms them. Thankfully, considering your age, I can only hope they are beyond your control now.
James, there is no need for you abuse me verbally. Again, you are portraying my opinion as extreme, when I have already corrected you politely the first time you did this, showing that my position is not extreme. What you have done now is a double breach of netiquette, ad hominem attack and straw man pseudo-argument.
This child does not have mental capacity to decide whether or not to try the controversial treatment. Somebody else must exercise his right vicariously. That is ordinarily the parent.
Prof Raanan Gillon expressed his position, and (coincidentally) mine, thus, in an email dated 1st July 2017, following his interview on the BBC’s Today Programme: “My personal view is that unless serious harm to the child or to others would result the parents should be the ones to decide what is in their child’s best interests. While the courts should not oblige doctors to provide treatments that those doctors believe not to be beneficial to the child , the courts should not prevent other doctors who are prepared to act in accordance with the parents’ views from doing so, provided as I said that those views would not cause serious harm to the child or to others. I tried to explain this in my BBC interview.”
Might I request that if you wish to express rage towards me, rather than to talk about ideas, you choose a published method of contact with from the list on the following page:
To John Allman
You have quoted Prof Gillon and said that his views are your views. Gillon is a respected medical ethicist. I listened to his contribution to the radio programme The Moral Maze. You will see in the quote that he states an important caveat – and he states it twice for emphasis.
“My personal view is that unless serious harm to the child or to others would result ………………………………………..provided as I said that those views would not cause serious harm to the child or to others. …………….”
With that caveat how could he not be right? But, at the April hearing Prof A. said that the child is likely to have the conscious experience of pain. Those treating him believed he was suffering. The US doctor, who had not examined the child, said he saw no evidence of pain but, and to my mind crucially, he said that he deferred to intensive care experts.
Daniel Sokol, writing in the BMJ, opines
“The restoration of some muscular movement and some degree of cognitive improvement on what appears to be a severely encephalopathic brain is arguably of no benefit. A greater degree of awareness and sentience could result in more, not less, distress, and more, not less, pain, whether physical or psychological. Cognitive improvement is no blessing if it falls short of the threshold of minimally acceptable cognitive function. The American doctor could not comment on the degree of improvement, but the preponderance of the evidence—and the finding of the Court in April—is that the nucleoside therapy is highly unlikely to confer any benefit to Charlie’s massively damaged brain.”
For all those reasons I would respectfully say that what Prof Gillon said is fine as far as it goes, but it doesn’t go very far.
I noticed the caveat in the email too, and thought you might notice it. I missed The Moral Maze, but I heard Prof Gillon on the Today Programme, where he did clearly dissent from the UK decision.
If one wishes to make a robust case for not giving the new treatment a chance, then writing as Daniel Sokol wrote, is certainly how to do it. But GOSH, which could have phoned the ward from the courtroom saying, “We won. Switch off now.”, still (apparently) have all the same doubts as Daniel Sokol, who wrote qualifiers, “… what appears to be … could result … could not comment … highly unlikely.”
If GOSH was sure Charlie was in pain, they’d have switched off by now. Any, why isn’t it possible to measure what Charlie is experiencing, by analysing his EEG?
What I found myself thinking Prof Gillon had been saying, inspired by what I had been listening to Prof Gillon saying on The Today Programme, was that death was also a “harm”, and survival ought not to be considered a fate worse than death.
I know the history of medicine is littered with examples of doctor’s killing their patients, of which the killing of human foetuses is only one example, but they’re supposed to preserve life, ordinarily, even when patients are begging to be put to sleep permanently.
A master study in delicate understatement M. I am sure that the timing of the statements by senior Republican politicians, coincidental as it is with their efforts to promulgate their President’s healthcare “reforms,” is just that – coincidental.
“the prospect of successful treatment was in effect zero”
I read this the same week that I read that the General Synod of the Church of England called for a ban on all future psychological therapies intended to satisfy the market demand of “pre-ex-gay” people struggling to resist unwanted temptations towards homosexual behaviour. The rhetoric that made such fools out of the Anglicans, went along precisely these lines!
I did not consider that Anglicans’ conclusion that “the prospect of successful treatment was in effect zero”, was anything but doctrinaire. Having some experience myself of suing public authorities, including NHS trusts, I doubted that the same pessimistic statement about Charlie’s proposed treatment, were any more scientific than those that had influenced Synod, about Conversion Therapy. Many health professionals will say, under oath, whatever the NHS Litigation Authority coaches them to say. “Tthe prospect of successful treatment was in effect zero”, makes a great soundbite.
You claim that “Many health professionals will say, under oath, whatever the NHS Litigation Authority coaches them to say.” I find this insulting to health professionals, and rather hard to believe. Are you able to offer any examples or evidence to support this claim?
Sorry. I shouldn’t have said “many” like that. However, I have found that the public sector doesn’t always fight clean, once the lawyers get their hands on a matter. I don’t want to name names, and I am sure the owner of this blog would prefer me not to.
John Allman, I don’t know what your area of expertise might be, and I wouldn’t want to sound patronising, but much of what you have said makes little sense. The issue of whether parents should always hold the trump card and be able to overrule the wishes of doctors is one which has been carefully considered by our courts, and as a lawyer myself I find the reasoning of the courts to be compelling. A baby with severe brain damage needs to be protected from his parents if they are determined to cling to a futile hope that a cure or improvement might one day be necessary. The same would surely apply if the patient was an elderly parent riddled with cancer and no longer able to communicate his wishes. We cannot opt to believe in science fiction and hope that an injection of an experimental fluid might by the grace of God reverse all the bodily damage and transform the patient into a happy normal human being merely because we all yearn for it to be so.
During the litigation the parents instructed their own eminent medical expert – it turned out that he agreed with the doctors at Great Ormond Street. So they turned in desperation to an American doctor who can offer an experimental treatment which offers no more than a slight chance of halting further damage. Should such treatment be given merely to satisfy the parents that they have done all that they can do for their child? Morally that seems dubious. The weight of the medical evidence is that the child does suffer discomfort and distress from the continuing treatment and the life support. It would be grotesque to put him under anaesthetic and inject him with snake oil remedies simply to placate his desperate parents.
Actually my main reason for posting a reply was the snide remark you made about the NHSLA (NHS Litigation Authority) for whom I used to act over a period of many years. It is utterly false to suggest that the NHSLA coaches its doctors in what to say. They have for many years operated a policy of encouraging doctors and hospitals to admit to errors and give open and frank explanations to patients who have sustained adverse outcomes. The NHSLA will have no part to play in the Charlie Gard case – their role is to represent NHS hospitals when claims for compensation are made – but I did not want that slur to stand unchallenged. I have never known the NHSLA to coach a witness to give evidence that is designed to defeat a claim.
Excellent piece of work, Matthew. Difficult to see how any reasonable person could dissent from your analysis.
You are too generous when you say
“So finally, just to re-emphasise this Mr Ryan, Mr Cruz and Mr Carlson: I am sure you want to be helpful……”
They have their eye on their problem of trying to get rid of Obamacare, so feeding the American public this guff about ‘socialised medicine’. No American politician could be so ignorant. Surely?
On reflection I think you are right.
Contaminating a British barrister’s blog, about the case of a British child, with petty point-scoring, about American party-politics, doesn’t strike me as good manners.
Thanks for your concern but I wouldn’t call Christopher’s comment a “contamination.” He has a point, even if It’s more trenchantly expressed than it could have been.
Sorry. Perhaps I was too grumpy. I’ve never been good at understanding criticisms of foreign politicians and whatnot, whom I’d never heard of. I think I’ve more-or-less got a clear head now about the ethical issues, all the same.
Christopher, I apologise to you, for my irritated reaction, when you posted about Mr Cruz and Mr Carlson, at my having to find out who these two were.
Had his parents been wealthy, Charlie would have been flown to the USA straight away and had his treatment there by now. The NHS is a mafia organisation who hate to be proved wrong and will allow people to die in order to prove themselves right.
I have had many dealings with the NH S and the managers, not the ward staff, are deceitful and corrupt. Charlie could have has his treatment by now, but the NHS are prolonging his suffering for their own ends.
And what ends would those be?
@Matthew The doctors who made the decision to not allow Charlie the right to be treated by doctors from the USA would rather he died now, in case the treatment works, and they are shown to be inept.
Doctors in the UK are hardly ‘cutting edge’ they tend to still practice as if it was the 1950s.
You have absolutely no evidence for that disgraceful smear. In fact they kept him alive even though they were perfectly entitled to let him die.
Keeping Charlie alive, but refusing to allow treatment is barbaric. But they have not had a case like this before where the parents have enough money, specialists from abroad are offering to treat the patient, and other countries are offering facilities to treat the patient.
Charlie could be treated by doctors from America in the hospital where he is now to save time, but ‘British’ doctors would never allow that ignominy.
Indeed. The easiest option for the doctors, if they were only intent on themselves, would be to approve the experimental treatment, that at least would ensure their backs were covered.
It actually takes a degree of bravery for the doctors to state that the treatment would most likely be futile and cause unneccesary suffering. That’s very difficult to say to (understandably) desperate parents and to the general public.
100 percent correct about the ignominy they just can’t allow. Matthew feels entitled to “let people die.” Matthew be assured if you stand between a kid and parents who want to save their son, you are doing more than letting die, you are killing him. You and your kind make me sick
My view is more biological. In the case where a child is born without the capacity to survive without intensive medical intervention, my inclination would be to leave well alone. We are all dealt our unique set of genetic cards, and many non-viable foetuses are miscarried or stillborn, this is nature. A child not born in a country with access to a sophisticated health system such as the UK benefits from would by now have peacefully slipped away.
An elderly person who has suffered a severe stroke which means they are unconscious and can no longer eat – we have to accept there will be a natural end to this life in a matter of days.
Caring for a baby with serious debilities is one thing, extrapolate 40 years down the line, with ageing if still devoted parents …
Just as well I’m not a doctor!
Apparently, money is not the object, as you suppose. Reportedly, the parents have collected £1.4 million by crowd-funding. The NHS Litigation Authority went to court to stop Charlie’s parents discharging their son “AMA” (against medical advice), into the care of the American hospital, still on life support.
However, I do agree that the NHS are making a meal of this, for their own usual ends, namely, showing who’s boss.
And when the money runs out? And Charlie still has no quality of life, still requires round the clock nursing care and his parents are worn out by the effort of looking after him? I suppose they will be looking at the NHS then.
What they want is medical experimentation on this little boy. They are selfishly putting their own pain at losing the child as a priority over what is best for him. If they truly loved him, they’d let him go.
“What is best for him” is a value-judgment decision to be taken, informed by scientific medical evidence. WHOSE decision is that to take? The patient’s, of course.
I trust doctors to make the mere medical predictions they are qualified to make, about diagnosis, prognosis and therapies, when they are unanimous. But, when my own life hangs in the balance, I would like, please, to take all the medical advice into account, and then to make MY OWN, informed, value-judgment decision. Likewise if my son or daughter needs his parents to make such a decision on his or her behalf.
“But, when my own life hangs in the balance, I would like, please, to take all the medical advice into account, and then to make MY OWN, informed, value-judgment decision”
You can. No-one who has full capacity can be forced to undergo medical treatment. It’s perfectly lawful for someone to refuse medical treatment, even if that refusal means they will die (interestingly though, you can’t insist on medical treatment which is not objectively reasonable. Even if you can pay for the treatment medical ethics mean that a doctor must refuse treatment they consider unreasonable).
The difficulty arises when someone does not have capacity either through age or disability. Then someone else has to make the decision. As Matthew says. most of the time parents (or carers) and doctors will agree what is proper treatment and there will be no problem. When there is disagreement, surely a neutral third party has to be the one to decide? Do you really hold the view that no matter how objectively unreasonable a parent’s (or carer’s) decision might be that they should always decide?
“No-one who has full capacity can be forced to undergo medical treatment.”
This takes us off topic, but please allow me to mention it. Somebody who DOES have full mental capacity, CAN be forced to undergo a medical treatment for a mental illness, under the Mental Health Act. This anomaly may be corrected when the Mental Health Act is reformed by this government.
See George Szmuckler on this topic, here:
People want a neutral 3rd party opinion? Not if they think about it. And have watched history & the news.
Most of us want someone who loves & cares about us to make such decisions. Can things go wrong that way? Yes, but let’s not pretend that they can’t go wrong the other ways either.
Allowing loved ones &/or next of kin to make the decision is the least problematic option. Nobody cares more about Charlie than his parents.
Money is no obstacle. Firstly, the parents have crowdfunded the treatment and have a huge sum of money in the bank, ready to be spent on Charlie’s treatment. I wonder how it will be spent if the court refuses to let Charlie be taken to America. Maybe it will line the pockets of other American clinics who offer dud cures to desparate people? And secondly, as is clear from the transcripts of the court decisions (does anyone bother to read the transcripts?) the NHS will fund the treatment for Charlie if it is demonstrated to be beneficial. The decision not to treat him is not on the basis of cost, nor to free up a bed, nor to show the parents who’s boss.
the concept of chattel is historic, biblical and runs very deep. Gillick was as recent as 1985
What has Gillick to do with chattels?
Maybe worth recalling also, that if the Cruz/Carlson line were to be pushed in the case of older children, then it would come up against our more liberal (for older children) Gillick based approach. They need to understand our common law a little more before leping into 140 characer – or indeed any – print.
How should we resolve a dispute when parents and doctors disagree about treatment?
Unfortunstely You missed mano time The Point in your endless letter. Vent and feed are NOT TREATMENTS but cares. GOSH is not treating Charlie since months.
GOSH is entitled to SUGGEST The best TREATMENTS, not to Kill Charlie, nei termini To substitute his parents statine which life have dignity to be protected and which mustang be terminated.
GOSH made many mistakes Just in these critical situation and even now their statement on severe brain damages ha ben denied by Prof. Hirano. You miss the point when you suggest Charlie’s best interest can be represented by a pro-death lawyer with a huge conflict of interest liKe Ms. Butler-Cole. Should it be an experimental treatment with 1% chances of success neither GOSH nor a Court nor you are entitled to prevent good parents to try this last chance of life for their child. No need to involve religion in this approach: it is simply respect of a human being suffering that you cannot resolve killing who suffers.
Let us not forget that Professor Stephen Hawking. NHS Doctors gave him two and a half years to live!
What does Hawking have to do with the Gard case?
Never a question that the withdrawal of any treatment would have caused his death. Or that the provision of treatment could arrest his deteriorating condition. Also, never a question that Hawking’s brain was ever damaged.
I know nothing about law in the US, but I strongly suspect that they have a similar system where patients lack capacity (either through age or disability) to give meaningful consent to medical treatment: i.e. it’s ultimately for the Courts to decide, not the patient’s parents/guardian/carer. Any other system would indeed make the patient a mere chattel of the parent/guardian/carer.
Assuming that this is correct, that makes the statements of Ryan et al all the more cynical and mendacious.
The NHS seems to be a system more interested in controlling its own reputation than listening to grave concerns over a patient, by his parents, and specialists from abroad offering cutting edge treatment.
It’s also significant that even if GOSH was completely privately funded and Charlie’s parents were paying for his care privately or via private insurance, the result would be exactly the same: his treating doctors, if they conscientiously believed that Charlie’s life support should be ended and if his parents disagreed, would have to apply to the Court. Again, I suspect if a similar issue arose in a (private) US hospital, we would see a similar application to a Court.
The “government” issue really is a complete red herring. Either Paul Ryan and his cohorts are utterly uninformed about the issue or they are cynically using this issue as part of their campaign against “socialised” medicine. If the former, a period of silence on their part would be appropriate, if the latter, there is a special place in the hell (in which they no doubt believe) reserved for them.
I find it strange that people who support the death penalty-including Paul Ryan feel that the government ‘has no place in the life or death business’. He is either an hypocrite or very stupid. Or both.
Sir, well said.
The death penalty is based on the basic concept of justice, an eye for an eye, and exists to remove murderers from society permanently. It’s a totally different debate.
It’s baffling when people can’t see a difference between executing a guilty person (a murderer) versus killing a helpless innocent (a murderer’s victim).
The execution of an individual (based on the concept of “an eye for an eye”) is arguably more to do with retaliation than justice.
It is also, of course, irrevocable, as the families of the wrongly convicted know only too well.
The continual advance in forensic science can bring convictions in previously unsolved cases; it can also show that an earlier conviction was unsound, or indeed plain wrong.
The death penalty is, sadly, also used by a number of regimes for offences other than murder.
For someone who fears context is being overlooked in 140 characters, what you tried to do with Saint JPII’s quote about burden is really low. My main point: What is trying to be killed, before it takes root in the UK as it has in the USA, is the idea that parents are indeed the ones responsible for their children, and the government subordinate. In the US, even citizens across the political spectrum, are clad as Day on that. So in trying to defend the nanny state, and yes on issues of life and death, you paint suffering as unacceptable. You have no idea of Charlie Gard’s suffering and how to measure it against pain of death. You have no respect for the parents who are not making the decision to kill their son but rather to try and find a way for him. If your GOSH is sincere about caring about the many patients who they see, then let the parents take Charlie off your hands so you can dedicate resources to the others. The world you cannot bear to see is one where your evil scheme, where government has supremacy over subjects, is not protected. Don’t give me that crap that you fear a world where children have no identity and rights apart from parents and you protect them. Here in front of you are parents who want to protect their child’s life. You don’t want to protect. You abort many before they are born. You have been caught with your pants down, and I pray that from now on, soft spoken killers will be seen as what they are:killers.
To Jorge Skorey
Painting a picture of a difference between the US and the UK is wrong. Read my latest contribution below and then explain the legal steps that US doctors and relevant bodies can and do take to promote a child patient’s interests if and when they form a view different to the parents view.
If you paid any attention to morality and ethics and to the civil legal structures here and in the US you would have to recognise a dilemma. If you can’t address that so be it. Recognising and addressing the dilemma should cause you to cease such references as “nanny state”, “government subordinate”, “government supremacy” “killing” and “pants down”.
I am intrigued to know why the use of the quotes of Saint JPII “really low”. Is it low to quote it because the Encyclical argues so clearly against you?
I like your phrase
“You have no idea of Charlie Gard’s suffering and how to measure it against pain of death”
and the concept it conveys.
The legal situation in this jurisdiction is clear. Charlie is without capacity; it is his parent’s duty and right to decide about his medical treatment. It is for his parent or parents to give or to withhold consent to the doctors for their treatment of Charlie. Although Charlie is without capacity he is an individual, a person in his own right; he is not his parents’ property, he is not a chattel. The law gives effect to this by allowing the court to take over the decision-making role if it is of the view that the parent/s are not able or do not carry out their duty in Charlie’s best interests. The court can be asked to step into that role by anyone. In theory any Tom, Dick or Harriet could seek to persuade the Court that it should take over the decision-making role from the parent/s. Very considerable hurdles exist to restrict Tom, Dick or Harriet’s applications; i.e. to prevent them from being heard. In practice applications must be from those with a proper standing, a proper role in the child’s welfare. This obviously includes doctors and hospitals treating a child.
To be clear, at no point in this process do doctors have the right to overrule the parents or to remove from the parents their right and duty to make those decisions. If the doctors believe that the parents decisions are inimical to the child’s welfare they can, perhaps must apply to the court for the court to take over that role from the parents. That role then passes to the court, not to the doctors.
Is that not that the case in the US? American jurisprudence stems from the judicial system here in the UK. It is inconceivable to me that parents in America have irrevocable rights over their children; that children in the US are chattels.
Talk about killing, socialised medicine, government intervention, resources is ill informed and largely irrelevant.
The open letter did not attempt to suggest what was or what was not in the child’s best interest.
For those who have, directly or by implication brought religious concepts into the discussion I would ask them to consider that there is a very real difference between on the one hand killing, and on the other, ending artificial life support. The UK court does not have the power either to allow or to order the doctors to kill the child. It can order that the doctors cease using artificial means to prolong the life of the child and thereby to let nature take its course, or not to stop providing those means.
I am grateful to John Allman for his gracious apology and to Mathew for his intervention. Will he forgive me if I say that I tend to think that trenchancy is perhaps like pregnancy – more or less is problematic.
It astonishes me that people atre highlighting the fact that most medical treatment in the UK is state funded when this is completely irrelevant to the point at issue. Any clinician in the UK, faced with parents who wanted treatment for their child that he considered was not in the child’s best interests, would act in exactly the same way as GOSH. This would be the case whether or not the child’s care was state or privately funded. Like you, I think it highly unlikely that there is not a similar system in the USA.
The only issue here as how far parents should be able to override medical opinion. I don’t think anyone would advocate that the parents should always have the last word. A good example is Jehovah’s Witness parents who didn’t want their baby to have a blood transfusion, even though the baby would die without it, had their wishes overriden by the Court (https://www.bbc.co.uk/news/uk-england-birmingham-26420908). Those parents were sincere in their view, based on their religious beliefs, that not having the transfusion was in the baby’s best interests, but would anyone really advocate that parents should be able to impose their religious beliefs on their children in that way.
If you accept that the Courts have a role in saving children from the effects of their parents’ religious beliefs, then you accept that parents do not ultimately decide.
This just leaves us as to what test the Court’s should apply in these situations; should it be the “serious harm” test suggested by Charlie’s parents or something less stringent?
Charlie Gard was born on 4 August 2016 in London. He initially began developing normally, but by early October his parents were concerned that he was not gaining weight. Had they been wealthy he would have been diagnosed much earlier and been flown to America, probably before he was even born.
The NHS operates under a 1950’s mentality, and doctors tend to pontificate rather than put their patient first. We will now never know if Charlie would have improved if he had been treated immediately. The NHS refused Charlie this treatment and kept him suffering a year for no good reason.
Researchers in the US have reported what they believe is a first-of-its-kind reversal of brain damage, after treating a drowned and resuscitated toddler with a combination of oxygen therapies.
The little girl, whose heart didn’t beat on her own for 2 hours after drowning, showed deep grey matter injury and cerebral atrophy with grey and white matter loss after the incident, and could no longer speak, walk, or respond to voices – but would uncontrollably squirm around and shake her head.
“The startling regrowth of tissue in this case occurred because we were able to intervene early in a growing child, before long-term tissue degeneration,” says hyperbaric specialist Paul Harch from the LSU Health New Orleans School of Medicine.
I have a little experience of something similar in my family. A relative, young couple in their 20s, first child had twins. The girl was fine but the boy was born with most of his brain missing, the hospital advised against taking the baby home, I think they would have let him die as there was no prospect of any meaningful life but no, the mother insisted on taking him home. This was ok when they were caring for a small baby but that baby grew to a very heavy young man, blind, deaf, needed a hoist to move him and had constant fits. The stress broke the marriage and blighted his sisters life as all the attention went to her brother she had to help care for. The mother twice developed cancer and died in her 40s when the boy was 18. was it the right thing to do? I think not. While I sympathise with Charlie’s parents if he was my child I would let him go. He is not being killed, he is only being kept alive artificially by modern medicine.
have changed m email address as requested
An excellent piece from Matthew – but there seems to be an error in it. Matthew provides what he believes is a link to the Great Ormond Street “position statement” but the link doesn’t work because it seems to be a link to a file on Matthew’s computer. I think the correct link is this: https://tinyurl.com/y8e2p8as
Is it possible that some of those who have expressed opinions on this page have not looked at the position statement and tried to absorb the contents?
Thank you. I will try to correct this mistake.
This blog post was far too kind to the grandstanding Americans, shamelessly exploiting the sad case of this wee mite in their own interests. Nor, except as a matter of rhetoric, would I give blog room to the view of the Roman Catholic Church or, indeed, the Church of England.
Still, I thank you, blogger, for the post.
Perhaps the NHS have prevented Charlie from having treatment long enough for his condition to deteriorate beyond treatment?
In a sense, yes, but you would be wrong to allocate the blame to the clinicians at Great Ormond Street. The parents and their lawyers appointed their own medical expert to produce a report, and he agreed with the Great Ormond Street doctors that any treatment would be futile. If they were determined to get a second opinion to persuade a judge that there was treatment in America that offered real hope, why didn’t they get the American doctor to fly over and examine Charlie in June, or May, or April? That’s what I find puzzling. Any delay was bound to make matters worse and any treatment in America should have been commenced as quickly as possible if it was to be commenced at all.
“why didn’t they get the American doctor to fly over and examine Charlie in June, or May, or April?”
I saw a claim in the papers that the American doctor had been invited over in Dec/Jan but had declined the offer.
@Blogger: are the legal aspects covered fairly, do you think, in the WKPD entry?