Serious Charlie Gard, Alfie Evans, and primacy of institution "best interest" over parents

[Deck Knight]

It's no secret I've been critical of socialized medicine in the past, so I'll be sparing on that. As an American, I can't understand much of what's going on with these stories except through a similar one of horrible abuse we had in Massachusetts a few years ago with Justina Pelletier and the Boston Children's Hospital trying to keep her from her parents while she degenerated massively in the hospital's supposed care. Basically when hospitals take hostile legal action declaring parents aren't qualified to make medical decisions for their children, it's never a good thing. The only way Justina got home is an army of people made their criticisms very public, very vocal, and defied the appeals to authority that medical professionals were just "acting in the child's best interests."

Now the UK has a different legal system than Massachusetts, of course. Bringing that background into these more recent stories, I have a few questions:

What is the process that happened whereby a court could *order* them not to leave the UK for medical treatment the UK did not need to financially provide for? How is a judge even involved in any of that? Why are judges saying Evans's parents "attitude toward" the NHS is relevant to their determination? Apparently they removed Alfie's chaplain because of similar "attitude" conflict.

What is the endgame of the supporters of the NHS? Its international reputation is in tatters between just these two stories, and there are so many more that received less international attention. Criticisms of the NHS for these and other failures abound. The issue for me has always been in large part that when government is the primary provider of medical care, criticizing the medical care invites the infinite resources of the government to deny the claims to salvage their own reputation. Failing private hospitals get closed. Failing public hospitals get a taxpayer-funded ad blitz.

In every system people who can't afford the skilled labor required to treat serious medical afflictions ultimately don't get the treatment that would be required to prolong their life. That's why health care isn't and can't be a right because someone skilled has to treat you (if you don't want to die even sooner from incompetence, in any case). But only the NHS appears to be making a pattern of ordering children to die from deliberate neglect and legally restricting their parents from treating them. For its part the local police told people they were "monitoring comments." That's uh, not really helpful against the Orwellian backdrop...

Why were these infants effectively ordered to die? Isn't the socialist's critique of capitalism that they only care about money? If it's not about cost to the NHS, what else is it? Two major international incidents within a few months is a pattern, and people will treat it that way. So what's the defense? And why is it becoming increasingly more common for large medical institutions to argue the primacy of their opinions as a higher standard for "best interests of the patient" than their parents?

 

[Bughouse]

Not going to really get into the weeds of this argument because it's ultimately not something I think worth arguing over outside of a philosophy class. It's estimated around 250k people per year die in the US due to medical error. It's millions world wide. (Many) millions more die from lack of access to care, and trust me that's not mostly in countries like the UK with national health services.

This is a sensational issue and I get why. Modern medicine is so good that any time someone dies who could have lived, we feel indignant. But there's nothing inherently different between being told you can't get whatever medical treatment these kids needed because of whatever reasons the NHS provided and being told you can't get whatever treatment you need because you don't have good, private insurance. And trust me there's a heck of a lot more of the latter going on in countries without national health services than there is of the former in countries with them.

And with that I'll point out the insanity of this logic for posterity:

In every system people who can't afford the skilled labor required to treat serious medical afflictions ultimately don't get the treatment that would be required to prolong their life. That's why health care isn't and can't be a right because someone skilled has to treat you (if you don't want to die even sooner from incompetence, in any case).

 

[Exeggutor]

I find it incredibly funny how the American view of any form of socialised medicine is some sort of communist hellscape where one is doomed to die. Bringing in criticism of the NHS itself amongst what's actually a huge issue in the rights of a parent to make a decision for their child vs the state seems like the lowest form of possible criticism you can go to. I find it telling that you included a pro-life website referring to individuals as "pro-gay" and anti-sex education in your sources over this issue.

I find it very interesting how involved Christian individuals and organisations were in advising the parents in this case, as well as the strange sort of rabid threatening of staff treating Alfie at the hospital motivated purely by a sense of righteousness. Saying that the child died from "deliberate neglect" is a willfully ignorant statement ignoring the length and severity of Alfie's decline. I do disagree with the judge's decision to keep Alfie within the country, as I believe the parents have every right to take him away if they wish - but at the same time, to suggest that somehow his condition would have improved if he had been moved elsewhere is laughable at best and just sad at worst.

In the US, you have cases like that of Jahi Williams, a braindead child whose condition was indirectly caused by her family and has a mother attempting to sure the hospital to keep her alive four years down the line. There was Terri Schiavo, whose parents and husband fought back and forth for fifteen years for her "right to die" and involved government intervention. Is it somehow better for the government to decide to keep a person alive if their guardian wishes for them to pass?

 

[cookie]

Why were these infants effectively ordered to die? Isn't the socialist's critique of capitalism that they only care about money? If it's not about cost to the NHS, what else is it?

i dunno where you're getting that idea from, but "socialists" do not ignore the aspect of money. In any sane economic system you need to be mindful of the cost of and allocation of resources. NHS is almost worshipped in a way here in the UK and as such there are many people who would happily and blindly chuck money at it, but this is obviously unsustainable. That's not to say that we shouldn't massively increase NHS funding, but we should also look to manage that funding more effectively, and the question is whether that management is left to the free market and business individuals, or government bodies/co-operatives.

Alfie Evans had no hope to regain consciousness. The cost of maintaining the biological functions of someone who will never gain consciousness is a waste of money that could be better spent elsewhere. On the parents' level this is rather emasculating - they have had the choice of finding solutions to their child's condition stripped away from them. And I think this emasculation by organisations (governmental or otherwise) is what you fundamentally object to. But the parents are not doctors. They're also not the ones paying for the treatment. If an expert in the field tells you X, you might consider it an infringement on your freedoms to be refused believe Y, but when doing so not only goes against the consensus of knowledge in the field but also prevents that money from being used elsewhere, it's rather selfish to do so. For a socialised medical system, it's necessary and by design to remove some agency from the patient, so that patients do not perform actions that are individually beneficial but detrimental overall. Sometimes, people need to be saved from themselves because they do irrational things.

But then, aren't they allowed to get a second opinion? It's a bit like wanting a second opinion on the law of gravity. The expectation value of getting a second opinion is so laughably negative that it's a waste of resources to do so. The child was brain dead: there's no exotic, experimental treatment that would have changed that in 2018.

As to why the judge prevented them from going abroad, I need to stress that nothing in the world was going to make him better. So why not just let his parents take him to Italy? I don't know, maybe the judge didn't want anywhere else to be wasting resources on a fruitless endeavour.

Also, this is being politicised to further the populist narrative: "hurrr the state shouldnt tell you what to do with your OWN flesh and blood". On a more abstract level, you need to accept that giving up certain freedoms is necessary for society to function. I'm willing to bet that in 100 years we'll look on non-automated driving as a dangerous indulgence because of how much it puts people at risk for the sake of autonomy.

That's why health care isn't and can't be a right because someone skilled has to treat you (if you don't want to die even sooner from incompetence, in any case).

so if a service requires someone else to provide it to you, it can't be a right. In that case, then nothing is a right, not even the right to free speech. Because the constitution is not like the laws of nature that you have to follow - they are enforced by judges, police, etc. Besides, a doctor is quite within their rights not to treat someone here. But if they do they'll get fired for not doing their job. I really don't see where you're getting the idea that doctors here are indentured servants lol, they all chose to study medicine (well, some were forced into it by their parents lol but that's a different matter). Every medic I knew at uni was there because they either had Indian parents or they want to treat patients and do good things, all the while knowing the financial sacrifices they'd have to make (seeing private work as a necessary evil). So there is no problem with finding willing slaves for the NHS.

 

[tcr]

Alfie Evans didn't die from "neglect" or some weird 'only I can operate on this child' idea held by the hospital. The parents themselves independently found several medical experts from Rome who all unanimously agreed with Alder Hey Children's hospital that Alfie's neuro-degenerative was unable to be cured. The parents, understandably I might add, were incredibly irrational with the treatment of the hospital, refusing to believe any of the medical diagnoses. They refused to accept that he was going to die, refused to accept the gravity of the situation, and also refused to take the word of an entire team of neurologists. To paint this scenario in the light of crazy socialized health care interfering with children's right to live is absurd.

This whole scenario just screams of misinformation, convenient leaving out of necessary information, and is sensationalized as a direct attack on socialized medicine. "Here's what happens when the big scary government is in charge of health care they get to decide who lives and who dies." For example, the article you linked "Criticisms of the NHS for these and other failures abound", mentions that Alfie Evans was court ordered to die "- though he hasn't been deemed terminally ill," which ignores the direct statement from the hospital (link above) where they went through "extensive investigations" and "have identified that Alfie has a neuro-degenerative disorder; [one that] is exceptionally difficult to establish exactly what type of neuro-degenerative condition Alfie has. Many investigations have taken place along with genetic testing but we have not yet been able to confirm a specific condition. This is not unusual when diagnosing neuro-degenerative conditions." They go on to state how although they don't know the exact neuro-degenerative condition, they have excluded the ones that are treatable through their testing. As a result it can be concluded that Alfie had an undiagnosed untreatable neuro-degenerative disease. As for Charlie Gard the experimental treatment was theorized to only work in the lack of brain damage. Despite the doctors requesting it, the parents declined any MRI scans until court ordered to do so, at which point they found extensive brain damage and muscle wastage that would have prevented the treatment from working. The reason they declined MRI scans until ordered to do so was because the evidence of the MRI scan would have made their position that the child could be saved impossible to defend.

Alfie wasn't "ordered to die" he was prevented a life where he would have degenerated anyway even with life support, unable to live a life where he could eat, talk, move, smile, or otherwise do anything consciously, and was determined by multiple professionals that were not exclusive to the hospital he was staying at to suffer from a fatal untreatable neurological disease as well as suffered from epileptic seizures when exposed to light that offered the illusion of purposeful movement. Finally, to suggest that the parents have as much or more say in diagnosing, identifying purposeful movement, and suggesting treatments or lack thereof compared to actual medical professionals is laughable. Of course the parent is going to do everything in their power to save their child and will irrationally reject any notion that it is impossible. Yeah its a tough position euthanasia is always a touchy subject but to suggest that the hospitals murdered the children just because or because of some critique of socialized medicine is sensationalism at its finest. I'm not going to comment on the philosophical debate of euthanasia because that's where I think this discussion will eventually be headed.

 

[vonFiedler]

What about parents who insist that their children use natural or alternative medicines in life-threatening situations? Do they have the best interest then?

 

[Soul Fly]

In every system people who can't afford the skilled labor required to treat serious medical afflictions ultimately don't get the treatment that would be required to prolong their life. That's why health care isn't and can't be a right because someone skilled has to treat you.

Last January, Malcolm Bird took his 1-year-old daughter, Colette, to the local emergency room. His wife had accidentally cut the young girl's pinky finger while clipping her fingernails, and it had begun to bleed. They were nervous, first-time parents who wanted a doctor's opinion.
Colette turned out to be completely fine. A doctor ran her finger under the tap, stuck a Band-Aid on her pinky, and sent the family home.
A week later, something else showed up at home: a $629 hospital bill for the Band-Aid and its placement on Colette's finger.