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The European Court of Human Rights decided today that the parents of Charlie Gard, a British toddler with a life-threatening and (as his British doctors say) non-treatable disease, can not take him to the US for experimental treatment. All the UK courts had turned them down previously; this was the last resort and it's looking like Charlie will now be taken off life support.

I got in an argument on Twitter over whether this is somehow symptomatic of a Single-Payer healthcare system, on the basis that a state-run judiciary is more likely to rule in favour of a state-run healthcare system, placing the opinions of NHS doctors above the parents' right to decide what's best for their child.

My argument was that it doesn't have anything to do with the type of healthcare system at all, that this is some sort of custody conflict decided by the courts - but I don't really know what is going on! There was ample media reporting, but nothing I found provided insight into what actually went down here in terms of technicalities. On what legal basis is the NHS able to prevent parents from taking their sick child to another country? To put it bluntly - why couldn't the Gards simply take the 1.3 million pounds they had raised through GoFundMe, hire a private medical transport service, and give the hospital the two-finger salute on their way out?

Did the NHS (or the hospital) take custody of the child away from the parents? Or does the NHS get to decide upon the welfare of its patients once they are in the system? Why were the parents not able to take Charlie away on their own recognizance, like (presumably) adults can refuse treatment and leave the hospital?

  • Wasn't quite able to make out from the FAQ whether this might be a viable question here or not. Open to suggestions if it isn't! – Pekka 웃 Jun 29 '17 at 18:31
  • Because doctors can sue to have medically necessary actions taken, and courts tend to decide based on sensibility and reason. They will always side with interests of the child regardless of who puts the arguments up. These things are also more likely in a country where the state values its citizenry enough to institute social welfare like a single-payer system. – Nij Jun 29 '17 at 19:34
  • All descriptions I have read tend to refer to the hospital (specifically Great Ormond Street) or to the doctors, rather than to "the NHS". – owjburnham Jul 5 '17 at 13:31
  • FWIW, I am pretty sure that the child is now deceased. – ohwilleke Aug 2 '17 at 0:43
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Such sad and tragic circumstances, my sympathy to all involved.

General

I do not know the specifics of English law as it applies but I believe it is similar enough to New South Wales, Australia that the general overview that follows is not likely to be far wrong.

Before a court intervenes there has to be a dispute and someone with standing must bring an action to the court. We can surmise that a dispute arose about the best medical treatment for the child between the child's parents and the child's medical professionals - if there was unanimity there would have been no legal proceedings.

Ultimately this is an issue of the welfare of the child. Medical professionals are under a legal obligation to report issues of child welfare to the relevant authorities. In the UK, the government authority responsible for child welfare is the Department of Education. We can presume that they intervened in accordance with their policies and procedures and their understanding of the law and the dispute could not be resolved. It is likely the DoE that brought the matter to the courts or the parent's disputing a DoE decision.

The court will decide such issues in the best interest of the child. In deciding what that is, they will consider all the evidence including the parent's wishes, the child's wishes (not relevant in this case but it can be for older children), other relatives, medical opinion etc. They will also consider what the law is, including precedent and make their decision. If you read the linked article about the high court trial the judge is quoted as saying:

“It is with the heaviest of hearts but with complete conviction for Charlie’s best interests that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

“I dare say that medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.”

“Charlie’s parents have sadly but bravely acknowledged and accepted that the quality of life that Charlie has at present is not worth sustaining, for he can only breathe through a ventilator, and although they believe that he has a sleep/wake cycle and can recognise them and react to them when they are close, they realise that he cannot go on as he is lying in bed, unable to move, fed through a tube, breathing through a machine.”

“Understandably, Charlie’s parents had grasped that possibility, they have done all they could possibly have done, they have very publicly raised funds. What parents would not do the same? But I have to say, having heard the evidence, that this case has never been about affordability, but about whether there is anything to be done for Charlie.”

“But if Charlie’s damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?”

This decision was reviewed by the European Human Rights Court who “endorsed in substance the approach” taken by the British courts and declared “the decision is final”.

Is it "symptomatic of a Single-Payer healthcare system"

Probably not.

Almost universally, child welfare cases are decided on the "best interests of the child". This judge in this case within this legal and cultural system decided as he did - and I do not doubt that it was a difficult and emotional task. Change the judge, change the case, change the law and change the culture and you may change the decision but, then again, maybe not.

Perhaps in a place with a different culture towards health care, the medical practitioners would not have formed the opinion that the experimental treatment was not in the best interest of their patient and there would have been no dispute that required government intervention.

Legal basis

Governments can pass laws that impact the people in their jurisdiction. The UK government has passed laws that allow them to interfere in the normal relationship of parental authority. The UK government is not unique - all countries have such laws.

Further, the UK government controls who enters and leaves their borders and in what circumstances.

Did the NHS (or the hospital) take custody of the child away from the parents?

Almost certainly not - this was not a custody battle.

Or does the NHS get to decide upon the welfare of its patients once they are in the system?

Of course. Every medical professional/hospital/clinic everywhere in the world has a legal and moral responsibility to provide treatment in the best interests of their patients. They will get sued if they don't.

Why were the parents not able to take Charlie away on their own recognizance, like (presumably) adults can refuse treatment and leave the hospital?

Because an adult can decide for themselves, a child cannot. Other people have responsibility for deciding for the child and when, as here, people with overlapping responsibilities (parents and medical professionals) have divergent views, the government intervenes through executive or judicial action.

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    "the UK government controls who enters and leaves their borders and in what circumstances": while that is true, it doesn't seem to be particularly important in this case. UK law grants its citizens freedom to cross its borders in both directions as a matter of right. As far as that is concerned it's not much different than going to the next town. (Would the decision have been much different had the experimental treatment been available in the next town?) – phoog Jun 30 '17 at 16:41
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    "Why were the parents not able to take Charlie away on their own recognizance, like (presumably) adults can refuse treatment and leave the hospital?" Generally speaking, an inpatient medical provider has the authority to refuse to discharge a patient that is not stabilized or does not have an adequate discharge plan in place, even if the patient is an adult. When someone (or you yourself) checks a patient into an inpatient care facility it acquires that control over the patient subject to medical practice standards. – ohwilleke Jun 30 '17 at 20:58
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    I haven't read this entire answer yet because I lost patience with it. It does not say in the first sentence what ought to be in one short sentence at the beginning. Did the hospital or did somebody forcible prevent Charlie Gard's parents from coming to the hospital and taking him from there to America? You say a dispute arose about his care and therefore there was a lawsuit, but if I disagree with someone about whether I should post this comment, that does not result in a lawsuit and does not prevent me from posting this comment. – Michael Hardy Jul 31 '17 at 15:49
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    In the last sentence: it's probably a matter of semantics whether or not "the government" includes the judiciary. However, I'd suggest that in the UK, "the government" refers specifically to the executive branch. For that reason, and because the DoE was a not a named party in the judgement, I'd suggest replacing those words with "the courts" or equivalent. – Steve Melnikoff Aug 1 '17 at 8:12

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