UN Charlie Gard, 10 months old, is denied experimental treatment in US - Time for some depression

Meet Charlie.

http://www.bbc.co.uk/news/uk-england-40206045

Charlie has a very rare genetic condition that effectively confines him to a vegetative state. He cannot even breathe without the help of a machine. His parents wanted to take him to the US for some experimental therapy that MIGHT have been able to save him. The hospital he is in disagreed. So they took this case to the Supreme Court.

The Supreme Court has rejected an appeal by the parents of sick baby Charlie Gard, over plans to take him to the US for treatment.

Chris Gard and Connie Yates want the 10-month old, who suffers from a rare genetic condition, to undergo a therapy trial.

His mother broke down and screamed as the decision was announced.

Charlie can stay on life support for 24 hours to give the European Court of Human Rights a chance to give a ruling.

He has been in intensive care at Great Ormond Street Hospital since October last year.

The hospital said therapy proposed by a doctor in America is experimental and that Charlie's life support treatment should stop.

Charlie has mitochondrial depletion syndrome, a rare disorder that affects the genetic building blocks that give energy to cells.

The family division of the High Court agreed two months ago that the hospital could withdraw Charlie's life support.

His parents have raised more than £1.3m through an internet appeal, in the hope they could take him to America for an experimental treatment.

Specialists in the US had offered a therapy called nucleoside.

Charlie's supporters gathered outside the court ahead of the hearing.

Holding pictures of the 10-month-old they chanted 'Save Charlie Gard' and "give him a chance".

Inside his parents waited for the decision. This is the final court in the UK able to hear their case.

Justice Lady Hale began by praising their devotion, as parents we would all want to do the same she said.

But as judges and not as parents they were concerned with the legal position and the proposed appeal she said was refused.

Charlie's mother Connie left the court wailing and shouting "they've put us through hell".

Chris, Charlie's father, held his head in hands and cried.

This may though not be the end. They want to try and take their case to the European Court of Human Rights.

Katie Gollop QC, leading Great Ormond Street's legal team, said the case was "sad" but not "exceptional".

She said the couple seemed to be suggesting that "parents always know best".

"Fundamentally the parents don't accept the facts," she said. "They don't accept that nucleoside therapy will be futile."

The court had earlier heard how Charlie could not could see, hear, move, cry or swallow.

Ms Gollop added: "He is on a machine which causes his lungs to move up and down because his lungs cannot go up and down.

"Charlie's condition affords him no benefit."

Following the ruling Ms Yates screamed outside court: "How can they do this to us?"

"They are lying. Why don't they tell the truth?", she said.

Charlie's life support machine will continue until Friday at 17:00 BST to give judges in Strasbourg, France, time to look at the case, the court said.

The case is now going to Strasbourg to be heard by the ECHR. Charlie will be kept on life support for another 24 hours to give the judges there time to think about the case.

This is sad, but I think the correct decision would be to shut off that life support and end this poor child's suffering.

 

[Lurker]

So I'll just leave this here. It's a blog written by a trauma surgeon whose penname is Doctor Bastard.

He has opinions on stuff and things, but he seems to be an educated fellow, and he is from the UK. Edit: He is also a father, so he is able to empathize with Charlie's parents.

There is one thing he brought up that worries me, and it's this:

If this is all sounding familiar to you, then you're probably aware of the similar case of Jahi McMath. However, the two stories differ in one major way. But how? After all, just like Jahi, Charlie can't move, he can't cry, he can't eat, he can't even breathe on his own. Right? So what is this major difference?

Unlike Jahi, Charlie can feel pain. That makes all the difference in the world (in my mind, at least). Charlie has the capacity to feel discomfort from the pokes and prods, the uncomfortable feeling of a ventilator pushing air into his lungs every few seconds, endlessly. And with no capacity to improve. Ever.

If what I bolded is true, that is why I'm not all too thrilled with this kid essentially being experimented on.

Edit 2: I wanted to elaborate a bit more on the notion that Charlie can feel pain. According to the Wikipedia article, the doctors don't actually know for sure whether he can or cannot feel pain. This makes things a bit more difficult on a moral level. I do see the merits of doing research on rare diseases like this, and as much as some people dislike it, sometimes you do need living "specimens". But where I draw the line is when the "specimen" can feel pain. That is torture. But in a case like this, where no one can know for sure whether Charlie does or does not feel pain, I'm not really sure what the "correct" thing to do is.

The case isn't black and white, and I think that our opinions need to take this fact into account.

 

[AnOminous]

That's fine. We'd rather not see this here:

Spoiler

http://metro.co.uk/2017/06/12/baby-...healing-instead-of-medical-treatment-6703599/
http://www.independent.co.uk/news/s...pray-instead-call-911-ambulance-a7512461.html
http://time.com/8750/faith-healing-parents-jailed-after-second-childs-death/
http://www.nbcphiladelphia.com/news/local/Ella-Foster-Faith-Healing-Death-412443963.html

None of those are close calls. You will note the people who did those things were criminally prosecuted.

This is a close call, and one that should be within the discretion of the person themselves, or their family when for whatever reason they are not capable of making such decisions and have not specified what decision to make in some living will document.

I am just seeing absolutely no benefit to withholding treatment that the government isn't even paying for when it can cause no possible harm to the patient, by the NHS's own admission of the condition of the patient, and some non-zero benefit to research purposes.

It just looks like pure spite to me.

 

[CWCchange]

LOL, universal healthcare. If it wasn't for American medical advancements, you would still be amputating left and right.

 

[Lorento]

There were protesters outside of the courts today saying things such as 'Let Charlie Live.'

I'm not coming down on either side of the argument here, but Charlie won't live either way.

Somehow Kiwi Farms has produced for thought provoking discussion on this issue than the protesters. I'm surprised and glad.

 

[AnOminous]

There were protesters outside of the courts today saying things such as 'Let Charlie Live.'

I'm not coming down on either side of the argument here, but Charlie won't live either way.

Somehow Kiwi Farms has produced for thought provoking discussion on this issue than the protesters. I'm surprised and glad.

As much as I've shitposted in this thread, it's an incredibly trivial issue.

On one side, you have potential damage to a vegetable, who may or may not be able to experience pain to some degree but is almost certainly not able to think about it. On the other, you have purely speculative research potential.

The main parties with benefits and harms strike me as the parents, but it's more to their own feelings of whether they did literally everything they possibly could have for their child. It's going to make no actual difference to the child, who is doomed and essentially already dead.

I still don't see the NHS interest in this unless it is simply to exert control over their turf. Their territorial primate instincts don't really impress me, no matter how much they clothe them in the language of law.

 

[Null]

It just looks like pure spite to me.

It actually seems like the Government is afraid of a high-profile case being resolved by the American medical system because then the thought may occur to people that socialized medicine isn't actually the panacea many believe it to be.

 

[AnOminous]

I'll make another comparison, to the Terri Schiavo case. In that case, Christianity-motivated nutjobs, both in the White House and the Congress, as well as "low energy" Jeb as the governor of Florida, attempted to intervene to STOP family from making choices about family, particularly, Michael Schiavo.

Despite that, family choice prevailed.

Here, faceless bureaucrats prevailed.

Puke. Enjoy your foggy island.

 

[Mesh Gear Fox]

Somehow Kiwi Farms has produced for thought provoking discussion on this issue than the protesters. I'm surprised and glad.

It really says a lot that on a trolling website, we can have a mature discussion without it decaying to an all out shit-flinging contest.

 

[captn_kettle]

It actually seems like the Government is afraid of a high-profile case being resolved by the American medical system because then the thought may occur to people that socialized medicine isn't actually the panacea many believe it to be.

GOSH couldn't give a fuck about yanks lol.

 

[Null]

GOSH couldn't give a fuck about yanks lol.

I didn't claim the hospital would care, I'm claiming the government would look bad if your medical system was emasculated.

 

[captn_kettle]

I didn't claim the hospital would care, I'm claiming the government would look bad if your medical system was emasculated.

Okay. "The UK couldn't give a fuck about the yanks".

 

[ADN_VIII]

My understanding of the condition is that his cells don't produce the necessary structures to produce ATP. As a result, his brain function and organs steadily failed to a point that he is now fed and ventilated by machines. It's well established that his heart and lung functions have failed, which means in turn that the parts of his brain that regulate autonomic functions have died. Neural tissue, as we know, does not grow back.

My understanding of the treatment is that it is not proven to be effective and is not designed for someone with this particular condition.

The only real opportunity in this case is to study the progression of the condition, since this is the most severe type. It's awful to know that he won't get better, but the more we know about a medical condition is more we know on how to treat it successfully.

 

[Terrorist]

Yeah let's deny these parents the opportunity to give their baby a potentially life-saving treatment with their own money because it's uncharted medical territory we don't know the efficacy of, but it's a human right that a single mom can get her 4 year old's dick cut off because he played with a barbie once since we're absolutely sure that will have no repercussions. Government heathcare is great, right guys? The shitlibs invariably in charge just love science, I'm sure they'll be fair and impartial.

Anglos are fucking morons. If this kid was a muslim or queer they would bend all sorts of rules to help him, but everybody else is fodder for bureaucracy catladies. It's a difficult case morally but goddamn it if they have the means to help him they should be allowed to at least try.

 

[Fareal]

Yeah let's deny these parents the opportunity to give their baby a potentially life-saving treatment with their own money because it's uncharted medical territory we don't know the efficacy of, but it's a human right that a single mom can get her 4 year old's dick cut off because he played with a barbie once since we're absolutely sure that will have no repercussions. Government heathcare is great, right guys? The shitlibs invariably in charge just love science, I'm sure they'll be fair and impartial.

Anglos are fucking morons. If this kid was a muslim or queer they would bend all sorts of rules to help him, but everybody else is fodder for bureaucracy catladies. It's a difficult case morally but goddamn it if they have the means to help him they should be allowed to at least try.

No sorry, the law in Anglo Moron Land doesn't allow parents to decide to "get a four year olds dick cut off".

The reason they have lost every hearing of this case is that there is, at this point, no medical evidence that this treatment would help Charlie - indeed there is no evidence at this point that Charlie can be helped at all.

The court's overriding concern is the best interests of Charlie. There are tragic cases sometimes where further treatment would be so futile - and thereby prolong the child's suffering - that their best interests are served by being allowed to pass away peacefully. Its rare. It is a genuine tragedy. But it happens.

Parents are not entitled in Anglo Moron Land to do whatever the fuck they like to their children "if they have the means" because children are people too and they have the right to be protected from prolonged suffering because Muh Purrentul Rightz.

 

[mulliganfarmer]

Yeah let's deny these parents the opportunity to give their baby a potentially life-saving treatment with their own money because it's uncharted medical territory we don't know the efficacy of, but it's a human right that a single mom can get her 4 year old's dick cut off because he played with a barbie once since we're absolutely sure that will have no repercussions. Government heathcare is great, right guys? The shitlibs invariably in charge just love science, I'm sure they'll be fair and impartial.

Anglos are fucking morons. If this kid was a muslim or queer they would bend all sorts of rules to help him, but everybody else is fodder for bureaucracy catladies. It's a difficult case morally but goddamn it if they have the means to help him they should be allowed to at least try.

It's not going to save his life. This child is basically dead. He is literally incompatible with life. Without those machines he would be clinically dead, they are just delaying the inevitable. Charlie's parents have this delusional idea that he's going to get treatment that will make him a normal kid but even with the experimental treatment passing the blood-brain barrier it can't work on tissue that no longer exists, and the chance of it passing in the first place is less than 10%. All these delaying tactics are doing is keeping a very sick child who is not going to get better in agonizing pain, and as far as I'm concerned that's the height of selfishness.

Not to mention there have been reports from the hospital that the family are abusive towards staff, hostile towards other families visiting their own sick children and refuse to do what their own legal counsel advises them to do. The father's sister runs a facebook group full of prolife nutters and science-illiterate idiots who drum up hate towards the hospital and outright encourages violence against the medical team. Great Ormond Street Hospital is getting hounded by these troglodytes for trying to do what's best for that suffering baby.

 

[Terrorist]

No sorry, the law in Anglo Moron Land doesn't allow parents to decide to "get a four year olds dick cut off".

The reason they have lost every hearing of this case is that there is, at this point, no medical evidence that this treatment would help Charlie - indeed there is no evidence at this point that Charlie can be helped at all.

The court's overriding concern is the best interests of Charlie. There are tragic cases sometimes where further treatment would be so futile - and thereby prolong the child's suffering - that their best interests are served by being allowed to pass away peacefully. Its rare. It is a genuine tragedy. But it happens.

Parents are not entitled in Anglo Moron Land to do whatever the fuck they like to their children "if they have the means" because children are people too and they have the right to be protected from prolonged suffering because Muh Purrentul Rightz.

First of all do you not understand hyperbole? There are no 4 year-olds getting castrated in the UK but there are 9 year-olds on hormone blockers (https://www.thesun.co.uk/news/23856...id-is-uks-youngest-user-of-anti-puberty-jabs/).

My point is there's a lot of inconsistencies about parental rights in medical circumstances and they often come down to bias. If they can't take Charlie to the US because they can't absolutely prove the treatment will help him, then why allow parents to give hormones to their kids, since no actual benefit to the children is proven to arise from those? In fact there are long-term physical and psychological complications for the latter but that's beside the point. The liberal courts are all about LGBT stuff and are lenient because of it, which is unfair given strictness elsewhere. Why not be just as strict?

For what it's worth I actually agree with you that Charlie can't be saved. I'm not sold on the ideas that the government should decide these things, that attempting the treatment will make him worse off or lengthen his painful life by very much (it could be worth a try), or that severely disabled people can't have lives worth living, but it looks very very grim. All I'm saying is there are definitely inconsistencies in how cases like these are treated, and they should be in the best interests of the child rather than political virtue-signaling.

Also @mulliganfarmer it's not a prolife/prochoice issue so please don't start with that shit.

 

[AnOminous]

For all this talk about prolonging suffering, will he be any worse off after the treatment than he is now, or live very much longer in his current state anyway? I sincerely doubt that. I'm also not sold on the idea that severely disabled people can't lead lives worth living, or that the government should have the power to decide that.

It strikes me as pretty speculative that there is even any suffering going on.

 

[Fareal]

First of all do you not understand hyperbole? There are no 4 year-olds getting castrated in the UK but there are 9 year-olds on hormone blockers (https://www.thesun.co.uk/news/23856...id-is-uks-youngest-user-of-anti-puberty-jabs/).

My point is there's a lot of inconsistencies about parental rights in medical circumstances and they often come down to bias. If they can't take Charlie to the US because they can't absolutely prove the treatment will help him, then why allow parents to give hormones to their kids, since no actual benefit to the children is proven to arise from those? In fact there are long-term physical and psychological complications for the latter but that's beside the point. The liberal courts are all about LGBT stuff and are lenient because of it, which is unfair given strictness elsewhere. Why not be just as strict?

For what it's worth I actually agree with you that Charlie can't be saved. I'm not sold on the ideas that the government should decide these things, that attempting the treatment will make him worse off or lengthen his painful life by very much (it could be worth a try), or that severely disabled people can't have lives worth living, but it looks very very grim. All I'm saying is there are definitely inconsistencies in how cases like these are treated, and they should be in the best interests of the child rather than political virtue-signaling.

Also @mulliganfarmer it's not a prolife/prochoice issue so please don't start with that shit.

The law in the UK is literally that the best interests of the child must be paramount in all decisions made about the child.

That is the point I failed to elucidate clearly above.

I apologise if I seem unusually spergy about this. Without trying to powerlevel too much, this exact subject - the limits of the parental right to direct medical treatment for children in the UK - is a particular long term research work of mine.

The law in the UK is different to the law in America, but people screaming "why is this the law" is literally nothing to do with the NHS or how it is funded. Nothing. The notional cost of Charlie Gard's treatment is in the millions by now, amd if it was determined to be in Charlie's best interests for him to continue as he is, he would continue to be treated, no question. This idea that the care of children is somehow economically rationed in this country is simply not true, not even slightly, and it is a terrible slur on those who practice paediatrics in the UK to suggest it is.

The parental right to consent to medical treatment in the UK is explicitly bound in law to exist only as far as is necessary for the parents to exercise their responsibility to care for the child in that childs best interests. This is why in the UK an averagely intelligent and legally capable 14 year old is entitled to direct their own medical treatment and the parents are not entitled to overrule their decision, even if that decision will rsult in a suboptimal outcome for the child, or even their death - and yes, this has happened.

I appreciate American jurisprudence has a radically different concept of rights - especially parental ones - and medico-legal ethics to our jurisprudence, but our jurisprudence and law on this matter was not pulled out of a lucky bag. The state of our law has been arrived at after many decades of very careful consideration and in the context of our own legal traditions, which are in many ways radically different to yours, especially in the context of childrens rights.

Our law makes sense to us, and part of the reason this case has attracted so much anxious public attention here is that the public here do not want the law to permit parents to do anything they want to direct their child's medical treatment. It is not something that is wanted here.

Our law does not permit a child to be treated for any purpose other than a direct benefit to that specific child. If Charlie himself cannot, on the preponderance of the expert evidence, be helped by this treatment the parents propose, it does not matter a fuck in our law whether or not it would potentially help other people in the future for this research to be carried out on him. You can consent to medical research, or futile treatment, for yourself, but not for anyone else.

That is the legal issue at question here.

 

[AnOminous]

Our law makes sense to us, and part of the reason this case has attracted so much anxious public attention here is that the public here do not want the law to permit parents to do anything they want to direct their child's medical treatment. It is not something that is wanted here.

There really is no industrialized country, even the U.S., where this is actually the case, though. Things generally need to be more clear-cut, though, before the state gets to step in and intervene. For instance, parents can't legally prevent their children from getting a life-saving blood transfusion for religious or other reasons. If they try, they will be stopped by force.

This is hardly a clear-cut case where one choice or the other is objectively superior. The outcome is going to be more or less exactly the same, the death of the child.

 

[Fareal]

There really is no industrialized country, even the U.S., where this is actually the case, though. Things generally need to be more clear-cut, though, before the state gets to step in and intervene. For instance, parents can't legally prevent their children from getting a life-saving blood transfusion for religious or other reasons. If they try, they will be stopped by force.

This is hardly a clear-cut case where one choice or the other is objectively superior. The outcome is going to be more or less exactly the same, the death of the child.

There is no "choice", here, though, which is what I'm failing to explain.

Connie Yates has no more power to consent to medically futile treatment for Charlie Gard than she has to consent to medical treatment for me.

If the court finds that the preponderance of evidence is that this treatment is medically futile, the parents' views are irrelevant. They have a right to be heard in proceedings, but they have absolutely no power to consent to futile treatment for anyone else, be that a child under 16 or not.

Their "right" to consent isn't being overruled by a court order here. If the treatment is futile, they have no right to consent in law.