Charlie Gard

[Beskar]

This is a topic which hasn't been discussed here but it is frequent in the news, even with Americans taking a very odd and weird interest such as putting a bill through Congress to make Charlie Gard an American citizen. It has people like the Trump and the Pope being side-to-side on the matter too.

So for those out of the loop, what is this Charlie Gard stuff?

From Express:
Charlie has a rare genetic condition called mitochondrial depletion syndrome, which saps energy from vital organs and causes progressive muscle weakness.
The baby boy, who suffers from brain damage, cannot breathe without a ventilator and doctors say that he is unable to hear, see or move.
His parents from Bedfont, west London, desperately wanted their baby Charlie to undergo a therapy trial in America.
Specialists in the USA had offered an experimental therapy called nucleoside bypass therapy, which could have, in theory, helped Charlie produce the compounds his body is unable to.
But Great Ormond Street Hospital had said the experimental therapy would not help. Doctors said his life support treatment should be replaced with palliative care so Charlie could "die with dignity"

Video from the Parents:




In short, we have a child who is locked within himself (cannot communicate, move, see) with severe brain damage, in constant pain, and cannot function outside of life-support machine which is doing everything on the behalf of his own body which cannot support itself. The treatment proposed has not even been fully tested on lab-rats and is essentially just speculation. It has only estimated 10% chance to be 'clinical significant' (reminder: clinically significant is different to practical significant). It is essentially using the child as a lab rat with no viable outcome for him even if it did work in enabling the body to support itself (breathing on its own, which is still unlikely) it is not a miracle cure to reverse a vegetable state. This is a very sick child.

Great Ormond Street Hospital is pretty much the number 1 children's hospital in the UK. Due to the Hospital wanting palliative care for him so Charlie can die with dignity, the parents have fought this decision in multiple courts where they have lost, including the European Court of Human Rights. This case has attracted a great deal of media attention, especially negative press against the hospital labelling the people who work there as "Child-killers" and making death threats against them.

So what are the Orgah's opinion on this case?

[rory_20_uk]

Let him die. Or if America wants him as a citizen he can be their problem. The money wasted on him is urgently needed by others. Best case scenario he emerges as a crippled sub 50 IQ barely alive human shell.

Why everyone is getting so het up over such a not even borderline case is astounding.

[Husar]

The baby boy, who suffers from brain damage, cannot breathe without a ventilator and doctors say that he is able to hear, see or move.

You/they probably mean unable, right?

And as much as I'm usually in favor of giving disabled people as much life as they can get, this one sounds like he was more or less born a lost cause. As for testing a new treatment on him, I would say testing on terminally ill humans sounds like you can't do much wrong other than cause them some extra pain. Which still seems evil unless the only alternative is a good chance to kill a person who is not terminally ill by testing it on them.

I'm not sure whether there is a right or wrong, perhaps there is just a grey aka hard and controversial decision.

[Idaho]

Let him die. Or if America wants him as a citizen he can be their problem. The money wasted on him is urgently needed by others. Best case scenario he emerges as a crippled sub 50 IQ barely alive human shell.

Why everyone is getting so het up over such a not even borderline case is astounding.

Because the anecdote is much more powerful to the human mind than the statistic.

[Fragony]

I think it's better to deny that kid a horrible life, I don't think the baby would qualify for euthanisia here which would be the most humane thing to do, but I wouldn't want it to have a miserable life. I also wouldn't want to be the one ending it. Hard one. Borderline eugenics it would be to euthanise that baby even if I think it's the best thing to do. I am glad that I only have to have an opinion

[Montmorency]

From what I hear, in the best case the experimental treatment could stop the degeneration, leaving the nearly-brain-dead child to perdure on life support until it "naturally" gives up the ghost. A test case one way or another.

Unless we go the extra step and codify such human beings as mandated guinea pigs - and that likely violates our human rights aspirations - then the courts' decisions here are valid and correct.

Nice to see the GOP collective amnesia on "America First": millions for a dead British babe, extraction from the needy American masses.

[Pannonian]

From what I hear, in the best case the experimental treatment could stop the degeneration, leaving the nearly-brain-dead child to perdure on life support until it "naturally" gives up the ghost. A test case one way or another.

Unless we go the extra step and codify such human beings as mandated guinea pigs - and that likely violates our human rights aspirations - then the courts' decisions here are valid and correct.

Nice to see the GOP collective amnesia on "America First": millions for a dead British babe, extraction from the needy American masses.

The parents are paying for the treatment, having raised 1.5m GBP already towards that. Of course, any or all of that may have come from American donors. The scenario reminds me of cancer patients paying through the nose for alternative treatments that ultimately have no effect except enrichen those administering the treatments.

[Fragony]

Testcase for what, legally, medically, whateverly. Calling it a testcase makes you look (unintentionally) very coldhearted and overly clynical to me. I can see what you are saying but I don't think we will ever understand eachother.

edit, was at Monty. And it wasn't meant to sound mean, I just think different I am the feeling-type, that will always overrule cold logic

[Xiahou]

It kind of seems to me that the people wanting Charlie put down are doing so for their own convenience. They argue on one hand that since he's essentially brain dead, there's no point in trying to treat him, but then say that allowing treatment would prolong his suffering. What indications are there that he's suffering?

The parents should act as the decision-makers for their child, as children are not legally allowed to make most decisions for themselves. They want to allow further treatment, have respected doctors willing to do it, and have the financial means to provide for it. Why is this even a discussion?

[Pannonian]

It kind of seems to me that the people wanting Charlie put down are doing so for their own convenience. They argue on one hand that since he's essentially brain dead, there's no point in trying to treat him, but then say that allowing treatment would prolong his suffering. What indications are there that he's suffering?

The parents should act as the decision-makers for their child, as children are not legally allowed to make most decisions for themselves. They want to allow further treatment, have respected doctors willing to do it, and have the financial means to provide for it. Why is this even a discussion?

What is the balance of opinion among medical experts?

[Montmorency]

It kind of seems to me that the people wanting Charlie put down are doing so for their own convenience. They argue on one hand that since he's essentially brain dead, there's no point in trying to treat him, but then say that allowing treatment would prolong his suffering. What indications are there that he's suffering?

The parents should act as the decision-makers for their child, as children are not legally allowed to make most decisions for themselves. They want to allow further treatment, have respected doctors willing to do it, and have the financial means to provide for it. Why is this even a discussion?

According to the first UK Supreme Court decision (for some reason the full text is referred to a transcript, which I can't locate):

(b) it was not certain whether Charlie is suffering pain but it is likely
that he is suffering it and at more than a low level (paras 22, 113, 114);

But the question you're really asking is whether parents have some fundamental capacity or right to determine the best interests of their child, above and beyond that of any other party. I do not believe that this is the case (that they do).

[Fragony]

It kind of seems to me that the people wanting Charlie put down are doing so for their own convenience. They argue on one hand that since he's essentially brain dead, there's no point in trying to treat him, but then say that allowing treatment would prolong his suffering. What indications are there that he's suffering?

The parents should act as the decision-makers for their child, as children are not legally allowed to make most decisions for themselves. They want to allow further treatment, have respected doctors willing to do it, and have the financial means to provide for it. Why is this even a discussion?

Depends on how you look at I guess, if all life would be sacred there wouldn't be any murder or war, but there is. What kind of life is there left for that kid, kindness can be so cruel sometimes, everybody knows that that kid is broken and will stay broken no matter what, it will never have more of a scent of life.

[Pannonian]

Depends on how you look at I guess, if all life would be sacred there wouldn't be any murder or war, but there is. What kind of life is there left for that kid, kindness can be so cruel sometimes, everybody knows that that kid is broken and will stay broken no matter what, it will never have more of a scent of life.

If all life is sacred, why have staff at Great Ormond Street received death threats over this? And the judge has already told protesters to stop disturbing other visitors.

[Fragony]

If all life is sacred, why have staff at Great Ormond Street received death threats over this? And the judge has already told protesters to stop disturbing other visitors.

I have no opinions, everything is always far too complicated to have one. I can come close to one but I know that I often have no idea what I'm talking about and should really just don't say anything. There is a really profound ethical question in this thread, though, what should live and what should die.

edit, worded that poorly, would be better of being dead. As I think of it, let it die. That's not heartless at all

[Seamus Fermanagh]

From conception to natural death.

That is the standard prayer in the Catholic church, that life will be respected and protected from conception to natural death.

Mother Church does NOT demand all heroic...and arguably in some cases quixotic....measures be taken.

[Beskar]

You/they probably mean unable, right?

Mistake in the quoted article, not mine. Edited it though.

I don't think the baby would qualify for euthanisia here which would be the most humane thing to do

It is not actually euthanisia, as there would be no need for any intervention to bring about an early death. It is only ceasing the artifical means of support to allow it to die naturally. Such things happen in the Netherlands and every country in the world (including the USA). What makes this particular case different is media sensationalism by the parents playing the "Underdog" card.

It kind of seems to me that the people wanting Charlie put down are doing so for their own convenience.

Going to myth-bust this. There is no parallels between Charlie's case and putting down a puppy.

1) Charlie is completely unable to support his basic functions. He requires life-support 24/7.
2) He is pretty much brain-dead and in a complete vegatable state which no treatment or invention can reverse or 'cure'.
3) What little there is, Charlie is reported to be in constant pain and nothing else. (see Monty's post).
4) The use of the machines are prolonging his natural death.

All this is completely different to euthanasia and 'putting down' and those parallels should not be used. There are clear distinct differences. In Euthanasia and 'Putting down', it is assisted suicide or accelerating a death. In this case, the death is being artificially prolonged and being prevented.

It is not "convenient" for anyone involved.

The parents should act as the decision-makers for their child, as children are not legally allowed to make most decisions for themselves. They want to allow further treatment, have respected doctors willing to do it, and have the financial means to provide for it. Why is this even a discussion?

Half of me simply says they should greenlight it, so the problem transfers to the United States so we can move on and put an end to the matter. However, there is an actual ethnical side involved because said American doctors don't actually care for Charlie Gard, just the publicity and the money involved. They can use it to help fund pet research projects or experiment with treatments which apparently "only work in theory" exploiting the parents with even more "false hope".

Overall, this is a very unfortunate case of a child being prevented from their natural death by use of technology and zealous parents doing their most, detrimental to Charlie himself, in refusing to let him go.

[Xiahou]

Half of me simply says they should greenlight it, so the problem transfers to the United States so we can move on and put an end to the matter. However, there is an actual ethnical side involved because said American doctors don't actually care for Charlie Gard, just the publicity and the money involved. They can use it to help fund pet research projects or experiment with treatments which apparently "only work in theory".

Overall, this is a very unfortunate case of a child being prevented from their natural death by use of technology and zealous parents doing their most, detrimental to Charlie himself, in refusing to let him go.

It's just all rather surreal to me that his parents and legal guardians have the means to try further treatment, well-respected doctors who think that it's worth trying and yet their government is telling them that they have to let their child die.

I don't think anyone would fault the parents if they decided his case was hopeless and decided to end life support. Nor would anyone blame the NHS for denying payment for expensive long-shot treatment. But again, they have the means to provide the care on their own. So what if it's only a 10% chance? Let them try it. If it works, and Charlie is able to have any meaningful improvment- that's wonderful. If not, he can still be allowed to die.

It seems to me that all the dragging ass on this is only making any possible treatment less likely to succeed as his muscles further deteriorate and prolonging his suffering if there is any. Why not just let them attempt the treatment and then have the issue behind us?

[Pannonian]

It's just all rather surreal to me that his parents and legal guardians have the means to try further treatment, well-respected doctors who think that it's worth trying and yet their government is telling them that they have to let their child die.

I don't think anyone would fault the parents if they decided his case was hopeless and decided to end life support. Nor would anyone blame the NHS for denying payment for expensive long-shot treatment. But again, they have the means to provide the care on their own. So what if it's only a 10% chance? Let them try it. If it works, and Charlie is able to have any meaningful improvment- that's wonderful. If not, he can still be allowed to die.

It seems to me that all the dragging ass on this is only making any possible treatment less likely to succeed as his muscles further deteriorate and prolonging his suffering if there is any. Why not just let them attempt the treatment and then have the issue behind us?

Thus transferring the blame on those denying the efficacy of the treatment rather than those charging an arm and leg for quackery. "The homeopathy would have totally worked if doctors hadn't delayed it by insisting there is no scientific proof of it working."

[Fragony]

If the treatment works that kid will never have a nice life. It may look nice but I see it as selfish to want it, there isn't anything Disney about it. How long do you want someone to be barily alive. I feel for the parents it must be horrible, but don't go all Frankenstein on it it's just mercy to just let it die

[rory_20_uk]

It kind of seems to me that the people wanting Charlie put down are doing so for their own convenience. They argue on one hand that since he's essentially brain dead, there's no point in trying to treat him, but then say that allowing treatment would prolong his suffering. What indications are there that he's suffering?

The parents should act as the decision-makers for their child, as children are not legally allowed to make most decisions for themselves. They want to allow further treatment, have respected doctors willing to do it, and have the financial means to provide for it. Why is this even a discussion?

In the UK, we have the NHS. The parents are not going to foot the bill for the cost of keeping their vegetable going. At over £500 / day they'll be out of money very quickly. Then the NHS will be footing the bill - and draining money from others in need.

There is no treatment, just something that has been tested on rats.

[Beskar]

The parents have stopped the Legal fight today.
http://www.bbc.co.uk/news/uk-england-40708343

"He told judge Mr Justice Francis US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week."

"Mr Justice Francis paid tribute to Charlie's parents and said no-one could comprehend their agony and no parents could have done more.
In his judgement, the judge said last week's MRI scans had shown "Charlie has no muscle at all" on parts of his body and was "beyond help".
He said Mr Gard and Ms Yates were now prepared to accept Charlie should be moved to palliative care and be allowed to die with dignity.
He also decried the "absurd notion which has appeared in recent days that Charlie has been a prisoner of the National Health Service," calling it "the antithesis of the truth".
"In this country children have rights independent of their parents," he said.
Occasionally there were circumstances when a hospital and the parents were unable to agree what course of action was in the best interest of the child patient, in that instance the decision is referred to an independent judge, he continued"

[rory_20_uk]

Wonderful - the parents have acted out all 5 stages of grief via the court system. What a horrendous waste of resource.

[Fragony]

I hope death treats him kindly

[Pannonian]

In January, GOSH invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court.

On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.

Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

Doctor with a financial interest in a case diagnoses without seeing the patient or reading his records. Protesters then take up the case.

[Sir Moody]

Doctor with a financial interest in a case diagnoses without seeing the patient or reading his records. Protesters then take up the case.

Honestly this snake oil salesman has really annoyed me - he has clearly manipulated the whole affair to buy himself media coverage of a treatment which is totally untested - I feel so sorry for the parents who latched onto the false hope he sold them - even worse when you realise they will probably continue to blame the Hospital and the Courts for withholding a treatment that would never have helped Charlie...

I don't know what the medical boards are like the states but I hope someone reports this quack.

[Fragony]

Doctor probably has no bad intentions at all, there is something about people who can think so clynical that scares me. I am sure he means well, but is completily not understanding that he would be doing a horrible thing, there is something missing, a lack of consideration of to the point of being out of touch with being an emotional being. I wonder if he even understands what harm he unintentionally willl be doing, I think that's not something that simply comes up. It's scarier than evil for me. I won't pretend to understand what goes through the parents mind, how could I understand, but all feels wrong to me

[Philippus Flavius Homovallumus]

Frankly, I don't think either this American Professor of Great Ormond street come out of this looking good.

On the one hand the case has certainly damaged the reputation of the Hospital, the moment you set yourself against Pope Francis on any moral question you have taken a losing ticket. On the other hand, the American Professor clearly has vested professional and financial interests in the case.

Take a look at this time line: https://www.theguardian.com/uk-news/...le-to-save-him

Charlie Gard has been argued over in the Courts for five months. In analysing the case from a moral standpoint we have to consider what his chances might have been five months ago had he been treated then. Not what his chances would have been last month.

Five months ago the American treatment would, perhaps, have arrested his decline and allowed him some quality of life. At that point the argument was that he "wasn't learning to see" because he couldn't open his eyes (his father posted a pic on Twitter with his eyes open) and not that he had massive brain damage.

It was a forgone conclusion that if Great Ormond Street could hold the parents off long enough then nature would "prove them right" and looking back to March this looks to me like the Hospital refusing a challenge to its authority and denying the parents the right to a Hail Mary which might have left their son with some quality of life.

So, in conclusion, I would say that all the medics involved are morally compromised.

[Strike For The South]

Sad story, but life is trade offs.

[Montmorency]

Frankly, I don't think either this American Professor of Great Ormond street come out of this looking good.

On the one hand the case has certainly damaged the reputation of the Hospital, the moment you set yourself against Pope Francis on any moral question you have taken a losing ticket. On the other hand, the American Professor clearly has vested professional and financial interests in the case.

Take a look at this time line: https://www.theguardian.com/uk-news/...le-to-save-him

Charlie Gard has been argued over in the Courts for five months. In analysing the case from a moral standpoint we have to consider what his chances might have been five months ago had he been treated then. Not what his chances would have been last month.

Five months ago the American treatment would, perhaps, have arrested his decline and allowed him some quality of life. At that point the argument was that he "wasn't learning to see" because he couldn't open his eyes (his father posted a pic on Twitter with his eyes open) and not that he had massive brain damage.

It was a forgone conclusion that if Great Ormond Street could hold the parents off long enough then nature would "prove them right" and looking back to March this looks to me like the Hospital refusing a challenge to its authority and denying the parents the right to a Hail Mary which might have left their son with some quality of life.

So, in conclusion, I would say that all the medics involved are morally compromised.

The timeline between you and Pannonian doesn't mention what exactly happened with Dr. Hirano (the experimental treatment purveyor) in January and after. Did he decline to visit and evaluate the patient because the treatment would have been expensive, the NHS would not fund it out of hand, and the parents had not yet raised a sufficient amount on their own? Other than pecuniary matters, I figured scientists promulgating experimental treatments take great interest in potential test cases, and this seemed sufficient for me to explain why he was speaking out of turn from the US recently. So is it on record why Dr. Hirano didn't take up the case in the beginning of the year?

[Seamus Fermanagh]

Honestly this snake oil salesman has really annoyed me - he has clearly manipulated the whole affair to buy himself media coverage of a treatment which is totally untested - I feel so sorry for the parents who latched onto the false hope he sold them - even worse when you realise they will probably continue to blame the Hospital and the Courts for withholding a treatment that would never have helped Charlie...

I don't know what the medical boards are like the states but I hope someone reports this quack.

People with a new idea/treatment/procedure/tool can be a bit monomaniacal about seeing to it's success. This doctor likely wants the accolades associated with coming up with a new, significant therapy. I suppose he would enjoy the money as well, but remember that most of that money will go to costs, etc. for the expensive equipment and meds.

However, unless a few test cases volunteer to use the therapy, the doctor will have no support to continue its development and achieve his/her dreams.

Medical boards in the states would insist on the Doc detailing the procedures, risks, and potential calamities as well as the possible benefits. With informed consent, the doctor could begin. Medical boards would NOT punish the doctor unless something was misrepresented as something it was not -- were our medical review boards to suspend doctors for being egotistical or lacking in bedside manner/class, we would have a LOT of suspended specialists and a medical crisis on our hands.