Charlie Gard: facts, medicine, and right-wing fictions.
If you ever wondered whether the media does a good job of reporting nuanced stories, the Charlie Gard case offers the counterexample. This is a case with no winners; not the child himself, with a vanishingly rare incurable inherited degenerative disease; not the parents, who have had to suffer not only the loss of a child but also all the hopes that any parents have imagined for the future of their child; not even the hospital and doctors, who have acted to try to give the best for Charlie — enlisting research projects to try to diagnose his problem, considering experimental therapy to treat him. They all deserve our sympathies.
But, infuriatingly, they haven’t all been getting them. The reason: some parts of the media — and especially the US media, separated from the UK’s Great Ormond St Hospital (which specialises in caring for children) by an ocean and a legal and healthcare culture — have obstinately overlooked the key principles in this case, focussing on those who can speak for themselves and ignoring those who can’t.
What I’ve discovered, dealing with outraged Americans on Twitter, is that pretty much nobody has actually read the judgment; and pretty much nobody seems to comprehend the legal principles that underpinned the decisions. This is not a “death panel”. This is not “the government deciding who lives and dies”. This is not about “cost”. It is about medicine, hope, and child welfare. Unfortunately, that has been distorted by some people for their own ideological reasons.
So please set aside for a moment what you think you know about the case, and read this. (If you can’t be bothered to do that, once again, read the judgment. It will leave you better informed than pretty much everyone who has commented on this.)
Let’s clear up a few of the misconceptions.
1: “there was a treatment”. No, there wasn’t. The specific variant of mitochondrial DNA depletion disease which Charlie Gard had, RRM2B, affects both muscle and brain, and has never been effectively treated, much less reversed or “cured”. There is no known cure for mitochondrial disease, though there are treatments of varying efficacy for some variants. If you know someone who was “treated” and is now “better”, it was a less aggressive variant. (A doctor of genetics told me on Twitter that this is an incredibly rare variant of the range of diseases, and “one of the most catastrophic”. This variant affects the DNA in the nucleus so that the mitochondrial DNA is not renewed, which means that the cells progressively can’t generate energy. RRM2B is so rare there have only been about 20 documented cases ever.)
“TK2”, another variant of MDDS, doesn’t affect the brain as RRM2B does. Professor Michio Hirano (on whom more later) has had some limited success treating TK2 patients. But he’s never tried treating a RRM2B patient. (Unsurprising, given its rarity.)
The “treatment” people thought was being offered here by Professor Michio Hirano is not only untested on humans, it’s untested on mice, as the judge noted — in a passage of his July judgment in which he appears supremely pissed off with Prof Hirano for having strung out the court and especially the parents for more than six month since January (when Gt Ormond St invited him to come and examine Charlie, an invitation which he never took up):
Testing in mice (gene-spliced to have the same condition) is standard procedure for testing any therapy before it’s tried on humans. You might say “but what harm could it do to skip the mouse step?” Besides the question of the difficulty of preparing it for a human, what if it tore apart his tissues, or had some other vicious side effect? Are you prepared to OK what might amount to torture for a dying child, instead of palliative care? This becomes a crucial point.
2: “the wishes of the parents must come first”. No, they don’t, and this is fundamental both in British (and European) and US law. Children are not property; they’re humans, with their own individual rights. Parents may think they have the right to treat their children as they wish, but that’s wrong. In the US, UK and elsewhere, if parents were to refuse their child cancer treatment, or a blood transfusion necessary to save their lives, then doctors would step in and seek an injunction to force it. (There’s case law in the US, and UK hospitals have easy legal setups if Jehovah’s Witness parents refuse necessary transfusions. You may be wondering — I did — why this doesn’t apply for vaccinations. The obvious answer: not having those doesn’t pose a direct threat to your life. Not getting an MMR jab might be bad, but you’re not at proximate risk of dying, unlike a blood transfusion for an operation or cancer treatment.)
Instead of the parents’ wishes, the wishes — or more accurately welfare — of the child comes first. If the parents and the doctors can’t agree on the best course of action, then you may eventually get what happened here: the two sides end up in court. The court appoints a guardian, whose responsibility is to determine what course will be best for the welfare of the child. The doctors and parents make representations; the guardian tries to weigh the arguments and reports to the judge, who rules on what should be done, guided by the guardian.
As Adrian Short points out, this is encapsulated in the judgment’s quotation of Section 1 of the Children Act 1989:
“The child’s welfare shall be the court’s paramount consideration.” Here it is again in the April judgment.
3: “Why is the government sentencing the child to death? What about the child’s right to life?”
First: it’s not the government. Judges in the UK, unlike the US, are not political appointees. The judicial system is operated independently of the government, and appointments are made within the profession, not through elections or ministerial choice. The judicial system is separate of government. It’s a part of the state, yes, but not in any way a political one.
Second, withdrawing ventilation and instead offering palliative (pain relief) care is not in itself a death sentence. This probably seems counterintuitive, so I’m grateful to Peter Newman, a British lawyer, who pointed out in a couple of tweets that withdrawing the ventilation would not be the cause of death. The cause of death is the MDDS. The ventilation might be artificially keeping him alive, but a doctor writing a death certificate would not write “withdrawal of artificial ventilation” as the primary cause, but something like “respiratory and heart failure due to inherited disorder”. Charlie has a right to life (under the Human Rights Act), yes; but his body can’t support it.
Third, while it’s true that under the Human Rights Act (part of UK law since 1998) everyone has a right to life (Article 2), there’s also a competing right: Article 3, which states “No one shall be subjected to torture or to inhuman or degrading treatment or punishment.” That’s the crux here. Lengthening Charlie Gard’s life without palliative care, without a treatment, is an infringement of his Article 3 rights. And we’ve already seen that he can’t survive. Everyone has a right to life, but not if keeping them alive is a miasma of pain that they can’t even explain to us.
That’s why the suggestion of “any treatment, no matter what” isn’t a sufficient one. You need to be able to show that it will be better for the child than all the other possibilities. This was not the case, as the April judgment notes:
There’s the crux: no prospect of benefit, hence not in best interests. (This point about lack of benefit also emerges in the cross-examination of “Dr I” — Professor Hirano — in the April judgment, when Gt Ormond St’s counsel asks what the putative treatment, which has had some effect on TK2 patients, might do for an RRM2B patient:
It’s pretty clear from this that Professor Hirano has no idea whether this could help. To reiterate: there was no treatment.
And it wasn’t about cost, as was noted. It was about welfare. From the April judgment:
Note also that phrase in the above extract: “how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?” (Emphasis added.) This is why there was a court case: both parents and hospital believed Charlie’s condition was unbearable; but the hospital thought there was no further hope (for reasons to be explained in the next paragraphs) and so life support should be withdrawn, while his parents thought there was a treatment. In that sense, the parents’ wishes were being listened to; they weren’t ignored or dismissed.
4: “the hospital waited too long — treatment was possible earlier”
Here’s the timeline. Born on 4 August 2016, Charlie was identified as developing poorly within a few weeks; by 11 October he was lethargic, his breathing was shallow, and he was transferred to Gt Ormond St. A world expert in mitochondrial disease (“Professor A” in the judgment) saw Charlie on 25 October, as that was the suspected diagnosis. In a tissue biopsy, mitochondrial DNA levels were found to be 6% of normal, and falling. (MDDS is diagnosed by levels below 35%.) Clearly he was already very, very ill, with a disease for which in general there are “no cures, and few effective treatments”. For RRM2B, because it affects the brain too (unlike other versions which only affect the muscles), the idea of treatment is remote. If you saw a report on CNN which said “and here’s someone with mitochondrial disease just like Charlie Gard!” it was possibly TK2, and it isn’t like his. RRM2B is also progressive: unless you can figure out how to make the mitochondria work, the condition will worsen and lead inevitably to death.
Gt Ormond St used its connections to go outside the NHS to get rapid genome sequencing for Charlie in mid-November 2016. This showed the RRM2B gene sequence. That sequencing was later confirmed by Oxford University Hospital.
Charlie had seizures on 15 December 2016; after that his brain scans, and physical examination, did not suggest any normal brain activity, such as responsiveness or interaction. By this time he was also deaf due to the progression of the condition.
The hospital intended to try nucleoside therapy in early January, and sought ethics permission to do so (child welfare; a hospital ethics committee would have to approve this untried treatment); but before that meeting, Charlie had more seizures and the doctors concluded that his brain function was minimal. Neurons don’t repair as muscle does. The doctors abandoned the plan.
From this you can see that in the course of two months he had gone from “lethargic” to “completely unresponsive”, with an amazingly rare disease which is difficult to identify (you have to do a differential diagnosis against many other ailments, and need gene sequencing to identify which version it is) and for which there are no — count them, zero — curative or even ameliorative treatments. For a parent watching their child get more ill, it must be agony; for a doctor seeking a way forward, it’s surely a painful experience knowing that medical science presently isn’t up to this challenge.
You can completely understand that in this situation the parents would search the internet and would turn up Professor Michio Hirano, who has a long list of published work in this and related areas. Gt Ormond St was happy to help, and in January invited Prof Hirano to visit and look over the scans. The parents, meanwhile, raised a huge sum of money. But as the judge noted, it wasn’t about money. It was about his condition.
And that is the end of the road. This is an awful disease, and the parents have suffered awfully — as has Charlie Gard, in ways we can’t comprehend.
Let’s recap:
- no cure, no treatment;
- the child’s rights are the most important, including right not to endure suffering;
- cost was not an issue.
You can also read an excellent recap of the case from the European Court of Human Rights, to which Charlie’s parents took their case. (They were unsuccessful in their plea.)
Ideological hay
But those who want to make ideological hay from the death of people, and don’t want to try to understand the issues involved, have accused the hospital, the doctors, the judges, the guardian, of acting against the best interests of those involved because it’s “single-payer” (a stupid phrase which doesn’t even apply to the NHS), it’s “death panels” (there wasn’t a panel, and it’s not about cost). It’s vile. And there has been a very strong reaction against this characterisation in the UK.
When even Melanie Phillips, who is nobody’s idea of a leftie, is condemning you then it’s time to consider what you’re doing. Phillips’s piece is a tour de force, and I recommend it, particularly for its rallentando (emphasis added):
Whether or not Great Ormond Street hospital was right or wrong in its diagnosis, its medical staff were only ever concerned with one thing: the best interests of their tiny patient. For this they have been subjected to vilification and death threats and portrayed as inhumane and murderers. This is unspeakable.
I write a great deal about the ideological bullying of the left, the lies published by left-wing media and the inhumanity and irrationality of so much allegedly progressive thinking. But I have never witnessed such concentrated ignorance, arrogance, stupidity and unthinking cruelty as has been displayed by the American political right over the tragic case of Charlie Gard.
Given what you’ve read above, let’s parse a couple of tweets from the US and, regrettably, one from UK on this topic.
First example:
This is US senator Ted Cruz, quoting CNN’s Jake Tapper quoting Gard’s father, who made a statement thanking the Gt Ormond St staff and nurses, his legal team, but saying “a whole lot of time has been wasted”. (Let’s not go back over that.) Cruz is a right-wing senator, would-be president, but clearly hasn’t troubled to look at the detail of the case. One will note the irony of someone who voted to effectively withdraw healthcare from millions of Americans asking “why government should have power to decide who lives and dies”, where the UK government had no such role here.
(Cruz is also taken to task in the replies to his tweet by a UK barrister on the blood transfusion point.)
Second example
“Hostage”. Bzzt. High-quality care (for free, no insurance questions). “Prevented him being treated”. No, diagnosed an incredibly rare disease (a challenge in itself; even specialists in these diseases might only see a handful of cases over years). “Declared treatment futile”. There wasn’t a treatment.
Third example
This guy really ought to know better, since he’s a member of the European Parliament. But he clearly has no idea about what the Human Rights Act means, and can’t conceive that children are not the property of parents. (He gets on to this point at about 1 minute into this 90-second rant.) The courts acted in what the court-appointed guardian, trying to weigh up Charlie Gard’s best interests, recommended. There was no treatment. Farage may think he has a get-out clause in “as long as parents are of sound mind…” but when you have a dying child, who’s going to assess your rationality? How? The parents, assisted by lawyers acting pro bono (for free; the judge had some hard words about the lack of legal aid), made a strong case. But because there was no treatment and there was no realistic chance of improvement, and every chance of inducing suffering, the guardian told the court that the Gt Ormond St medical opinion should prevail.
A side note on debating tactics: you can bet that if there had been more medical disagreement about the best way to proceed, Farage would have said that “opinion was split and yet they chose to…”. But because there’s unanimity, he says they “closed ranks”. One didn’t hear him complain that doctors had “closed ranks” over the best way to treat him after his plane crash.
Coda: RTFJudgment
In my time as a reporter at The Independent (1995–2004) and then the Guardian (2005–2014), I spent some years covering science and medicine as well as technology. Those former topics brought me into contact with some remarkable scientists and doctors who had done amazing things.
It also brought me into contact with people who were struggling with illnesses, often of loved ones: I covered the BSE scandal, which led directly to people developing vCJD (variant Creutzfeldt-Jakob Disease), a degenerative brain disease which could in a couple of years leave its victims unable to swallow, move or react to stimuli. Families of vCJD victims gave testimony at the opening days of the official vCJD Inquiry; it was heartbreaking, and they were heartbroken.
Reporting on those general fields also brought me into contact with what could be called chancers — people eager to push medical ideas, “breakthroughs” that turned to dust. But I never came across the awful misrepresentation of a careful judicial deliberation like we’ve seen over Charlie Gard. It’s bad. The only lesson I can offer: seek out the primary sources of information — especially legal judgments. They’re online, they’re written in clear English, and they’re very informative. In this case, they tell the whole story. If only people were prepared to read, in this world where so much is available for free online.
- For another perspective on such cases, this article on the emotional effect on paediatric ICU nurses is worth your time.
- Aug 4: a doctor from Gt Ormond St wrote anonymously about the pain of being vilified by people who don’t know about the case: We didn’t want to lose Charlie, and we didn’t want his mum and dad to be without him, but it’s our job, our legal and moral obligation, to stand up for him and say when we think that enough is enough. There are few people in the world who are more injured by doing that than someone who has chosen to work in intensive care; it’s not in our nature to stop fighting, but sometimes it’s just not the right thing to do any more. My colleagues and I worked our hardest, tried everything, fought so hard for this family but there was nowhere else to go. It was obvious to all those people who treated him. We gave him drugs and fluids, we did everything that we could, even though we thought he should be allowed to slip away in his parents’ arms, peacefully, loved.
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