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http://www.bbc.co.uk/news/uk-england-40708343

Perhaps someone on a pc can copy the article.


This has been in the national news for quite sometime. Long and short of it, Charlie has a disease of the mitochondria which is more or less terminal. There was a new expirimental treatment in America. A page was set up which raised over £1,000,000 to fund the treatment. However the NHS at Saint Ormonds Street Hospital saw that the treatment had a very small chance of success and went to court over ending his treatment and letting him die. This was back in April.

Today, the parents finally dropped the case after hearing that his disease was too far gone to be healed.

What are your thoughts on this? I know this is a very sensitive subject and has divided a lot of people, but I side with the hospital. The treatment was so unlikely to succeed, and even if it did, he'd probably live his life with no senses of any kind.

I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.

 Howard A Treesong wrote:
I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.

The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.

Why is a hospital stepping in to prevent care to a patient?

 Dreadwinter wrote:

 Howard A Treesong wrote:
I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.

The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.

Why is a hospital stepping in to prevent care to a patient?

Indeed. It was totally immoral for the hospital and government to prevent him from receiving this experimental treatment. They have ZERO business in deciding when to pull the plug, that should have been solely the parents decision.

This is the problem when the government gets involved in controlling its citizens lives too much. This was infact, a dreaded "Death Panel". Even worse is that they did it when there was a potential treatment option available. You should only consider pulling the plug when all options are exhausted, and even then it should be the parents decision. Not the hospital or the government.

The people who made this decision should be tried for murder and/or denial of medical treatment. They broke the Hippocratic oath at the very least.

http://www.bbc.co.uk/news/health-40554462

Can't he be treated?
Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, want Charlie to have an experimental treatment called nucleoside therapy.
A hospital in the US has agreed to offer Charlie the treatment, and Charlie's parents have raised funds to take him there.

Connie Yates and Chris Gard raised more than £1.3m for experimental treatment for Charlie
But Charlie's doctors at GOSH do not think this is the right care for Charlie.
They say they have explored various treatment options, including nucleoside drug therapy, and none would improve Charlie's quality of life.
They say Charlie's life support should be switched off and he should be allowed to die.

How did Charlie's doctors reach this decision?
Charlie's doctors say his brain is extensively damaged at a cellular level.
They say the US clinician offering the experimental treatment agrees it will not reverse this brain damage.
GOSH applied to the High Court for judges to decide Charlie's future.
The High Court agreed with the GOSH doctors.
Charlie's parents then appealed against the decision, but courts ruled that the original decision should stand and that it would be in Charlie's best interests to be allowed to die with dignity.

 Dreadwinter wrote:

 Howard A Treesong wrote:
I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.

The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.

Why is a hospital stepping in to prevent care to a patient?

The NHS is under massive financial constraints and cutbacks.
They'll have guidelines for when the cost of a patient's treatment is going to provide negligible benefit to them.
That cost can be spent elsewhere.
As a purely money-based decision, in a dwindling budget, they will have to cut treatment at some point.

These parents will want their child to live, no matter how disabled he might be. But, unless they can fund his treatment privately (and it seems they might have been able to), this may be where the hospital were trying to deal with the parents' loss, as well as helping the child.

A life without living quality is no live At all. Tought i agree that for humanity as a whole this could had been a opportunity.

 Skinnereal wrote:

 Dreadwinter wrote:

 Howard A Treesong wrote:
I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.

The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.

Why is a hospital stepping in to prevent care to a patient?

The NHS is under massive financial constraints and cutbacks.
They'll have guidelines for when the cost of a patient's treatment is going to provide negligible benefit to them.
That cost can be spent elsewhere.
As a purely money-based decision, in a dwindling budget, they will have to cut treatment at some point.

These parents will want their child to live, no matter how disabled he might be. But, unless they can fund his treatment privately (and it seems they might have been able to), this may be where the hospital were trying to deal with the parents' loss, as well as helping the child.

They privately raised money for the treatment. So this is a bad argument.

Edit: Actually, I reread that and it is a bad argument for more reasons than that. "As a purely money-based decision, in a dwindling budget, they will have to cut treatment at some point." This, in a single payer system, should never be a thing. The only time there should be a line drawn on when to cut treatment is when the child's heart stops. Quality of Life is not an argument for letting a person die, as LIFE always has more quality than DEATH.(If a person wishes to die, that is a different scenario) Money should never be a part of the equation, because where/when do we draw that line? Is a rich persons life more important than a poor persons? Are we more aggressive with treatment because Bill can make a large donation to the hospital if we save him?

These are awful ways to argue about the life of a person.

 Dreadwinter wrote:
They privately raised money for the treatment. So this is a bad argument.

It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.

Problems came. The drug in question had not even seen a lab rat test In Charlies condition.

This was not even rat tested if true, on the less severe version I had but there was zero testing on his exact condition if one article true.

Plus would not reverse the brain or sensory damage already done months ago. Even if it work he be stuck on some machines for rest of life and brain damage cannot be reversed. The quality of life must be considered that Charlie would of had.

Sadly I believe there is a reason the judge made the choice he did.

 Skinnereal wrote:

 Dreadwinter wrote:
They privately raised money for the treatment. So this is a bad argument.

It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.

And? All three people involved are citizens of the UK and should be covered for that, correct?

 Skinnereal wrote:
It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.

All the money in the world wouldn't have helped to give the baby any more life than being a package in a hospital. He never had a chance even if generous donors thought the American researcher might have a miracle cure. I'm sorry for the parents but this wasn't ever going to help.

What they can do, though, is put the donations into a fund to research this particular condition. A million+ is a lot of cash, maybe enough that the cure saving future babies could be named for Charlie.

Spetulhu wrote:

 Skinnereal wrote:
It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.

All the money in the world wouldn't have helped to give the baby any more life than being a package in a hospital. He never had a chance even if generous donors thought the American researcher might have a miracle cure. I'm sorry for the parents but this wasn't ever going to help.

What they can do, though, is put the donations into a fund to research this particular condition. A million+ is a lot of cash, maybe enough that the cure saving future babies could be named for Charlie.

It can go to help fund the cure on the releated condition and his. That is proven and has worked, with testing maybe adapted to help. But it needs testing, its not even entered lab stage.
However, the one he sadly got, has been classed as Terminal, and whatever we do at current is just buying time at current.

None of us have anything close to the expertise to discuss this intelligently.

As general rules, though, I think doctors should trump parents in care decisions, and whether allowing someone to die is the right choice or not is, for me, entirely down to level of discomfort they are in. Unfortunately, expert opinion on the level of discomfort Charlie Gard was in ranges from zero to extreme.

 Grey Templar wrote:

Indeed. It was totally immoral for the hospital and government to prevent him from receiving this experimental treatment. They have ZERO business in deciding when to pull the plug, that should have been solely the parents decision.

It has nothing to do with the government. You need to get a bit more familiar with what has happened rather than jumping straight into the EVIL SOCIALIST DEATH PANEL HEALTHCARE like all the US Twitter stereotypes are doing. Just need to tick off the NHS would have killed Stephen Hawking box on my bingo card.

They broke the Hippocratic oath at the very least.

I'd argue that artificially prolonging the life of someone who is suffering and getting worse is doing harm.

Charlie was beyond saving. The idea of being alive is better than being dead I don't hold to. With his level of brain damage he had no chance. It is sad and breaks my heart for what the poor family will be going through.

But in my opinion the judge is correct. But also in my opinion the judge should never have been involved. They raised the money they should been allowed to try. I doubt it will have achieved anything but it may have advanced the knowledge base for this disease

The two arguments on either side of this case are pretty simple:

As long as somebody cares and has hope despite the evidence showing there is no hope, all resources should be given to that person. Be companionate, no matter the price.

Once there is no hope, all time and resources spend on that patient are a waste and take away the time and resources spend on patients that could actually benefit from them. Cut your losses and move on.

And every case, and the way people view those cases, falls somewhere along the line between those two realities.

I'm with the courts on this. It's a tragedy that the kid had the illness, and an even greater one that they weren't given the merciful option. I understand the parent's grief, but no amount of throwing money can prevent death or a severely stunted quality of life.

I believe anyone levelling the GOST doctors with death threats is a hypocrite, and is incredibly wrong.

Any money raised can be used by the family for their own sake, but I think for the reason it was donated, it should be put into research for the illness. We can move on as best we can from this, and work towards preventing/curing it in the future.

I feel that parents need to listen to experts. Those properly qualified.

Perhaps the treatment works, perhaps it doesn't. But you have to think of the quality of life after the procedure.

And I say this as a beneficiary of quite revolutionary treatment. I short, I was born in 1980, and my stomach didn't have a plughole. Owt you put into me, came straight back up.

After a mere two weeks of life, I had keyhole surgery to more or less poke a plughole in my tummy. And now I'm a 6'2" monstrosity.

Had I been born a year or two earlier, I'd have been toast. So medical science can absolutely work miracles, but parents need to be ready to let go. I know this sounds harsh, but put aside your ego and think of the sprog. If like me there's a chance they can go on to live a full life, then absolutely fight for that.

But if it's a case of 'well they'll probably, maybe, ish' live to see their fifth year? What's the point? You're only extending their pain to assuage and put off your own grief a few years.

It is also worth to note that this same thing happens every day in hospitals around the world, including the US.

It's not even about "is this a waste of money" as it is often portrayed. It's about the ethical issue of "are you treating the patient" vs "are you treating the family and prolonging the suffering of the patient or keeping a corpse alive for their sake".

I've also taken care of way to many people that were the victims of family members who were emotionally unable to deal with the reality that was facing them. I've had to stand up to many family members who tried to bully the patient into making different decisions. I've had lawsuits threatened against me because I made sure the patient was able to use her voice, because the family was not ready for reality even though she was. It's hard enough to do when the patient is able to speak for him or herself. It's even harder to do when the patient does not have anybody speaking on his or her behalf. At some point someone needs to speak for the patient and think "what is best for him and what would he want".

Every article is talking about how hard this is for the parents, but the hard cold reality is that the emotional well being of the parents doesn't matter one single bit. It's the patient that matters and that's the only thing that matters. You don't do anything to a patient just because it will make a family member feel better. That's the problem in a lot of medicine.

There are a lot of bodies with zero quality of life who are suffering for years hooked up to machines while their body is slowly shutting down, for the simple reason that a family member is saying "I am not ready to deal with this reality yet and I'm not ready to have a dead parent". So we shrug our shoulders and say "sorry lady, gotta suffer because we don't want your daughter to be sad". Because the person who has a voice is using that voice for herself, while the patient remains voiceless.

It's easy to judge the actions of panels who make these decisions, but it's hard to actually be on them and make the decisions. The best thing that can come out of this is to realize that we need a system that is able to give a better voice to those without one, and to realize that family members are not the patient.

Fill out your dang Advanced Directives people!

Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.

Doctors made the right call. Parents were clutching at straws, understandably so, but lets be real about that.

If the kid could have had a real life then even at a million to one odds I'd have said go for it, absolutely. Given that he was facing a million to one odds simply to continue existence in only the most technical of sense of the word, I'm on the side of the doctors here.

I hope if I am ever in that situation, where even if a long shot treatment worked but I'd still be a veggie, someome just pulls my plug instead.

 Vaktathi wrote:
Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.

Doctors made the right call. Parents were clutching at straws, understandably so, but lets be real about that.

If the kid could have had a real life then even at a million to one odds I'd have said go for it, absolutely. Given that he was facing a million to one odds simply to continue existence in only the most technical of sense of the word, I'm on the side of the doctors here.

I hope if I am ever in that situation, where even if a long shot treatment worked but I'd still be a veggie, someome just pulls my plug instead.

That's the thing, we have reached a stage where we can prolong life, and treat to a degree where we ethically need to work out where we stop.
Sure wr could of kept Charlie alive for 5 years maybe on machines etc, but is that in his best interest? Is ot truely a life we would want anyone to live ?

At that stage parents are overidden by Doctors pegrogrtive, and they need to discuss the pro, cons, and the medical ethics behind the case and make a multi disapliney decision based on all facts on what is the best thing for yhr patient in question, not just the parents. They have a part but Doctors, they ate the professionals in this situation.

 jhe90 wrote:
Doctors, they ate the professionals in this situation.

Why isn't this part of the story getting more press?

 Vaktathi wrote:
Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.

And the treatment they had in mind wasn't near the stage where human testing would be the next step.

I don't agree that he baby Charlie would be benefiting from this. I don't believe that any form of life is better than no life, when you are a crippled vegetable on life support with no long term prospects. When I asked who benefits, I believe it's the conscience of the parents I think is coming first, not the genuine wellbeing of the patient.

 Ahtman wrote:

 jhe90 wrote:
Doctors, they ate the professionals in this situation.

Why isn't this part of the story getting more press?

Oh. My. Gods. The Doctors have been the real zombies the whole time! Long hours with no rest, always around dead or dying people, always removing organs or "dead tissue" from people. THE SIGNS HAVE BEEN THERE THE WHOLE TIME!

 Howard A Treesong wrote:

 Vaktathi wrote:
Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.

And the treatment they had in mind wasn't near the stage where human testing would be the next step.

I don't agree that he baby Charlie would be benefiting from this. I don't believe that any form of life is better than no life, when you are a crippled vegetable on life support with no long term prospects. When I asked who benefits, I believe it's the conscience of the parents I think is coming first, not the genuine wellbeing of the patient.

This really depends on how you see life vs death. Is being alive better than being dead? We can't really answer that, that is a very personal question for a person. Many have differing views on the subject. Even more so, this was a child who would not be able to express whether or not they want to live. So who do we ask about that? Doctors? No. Why do you ask? If the child was born perfectly fine, it would never have dealt with the doctors. The child would have grown up around its parents, learned and grown with the parents and most likely taken many characteristics of the parents. Furthermore, the child is the responsibility of the parents. The parents would be acting in the interest of the child as the childs poa. The decisions a poa makes should be taken as the decisions straight from the patient themselves. What this the court did was effectively strip the parents of this right.

This was not a death panel, though this was a panel that will ultimately result in a death. But, the death would have happened anyways. This was a panel that stripped the rights of the parent, preventing them from seeking all possible treatments available for their child.

 Dreadwinter wrote:
This was a panel that stripped the rights of the parent,

Rights of the parents =/= rights of the child.
Sometimes those with all the love and best intentions in the world can make the wrong decisions that are harmful to the people they are trying to help.

nfe wrote:
None of us have anything close to the expertise to discuss this intelligently.

As general rules, though, I think doctors should trump parents in care decisions, and whether allowing someone to die is the right choice or not is, for me, entirely down to level of discomfort they are in. Unfortunately, expert opinion on the level of discomfort Charlie Gard was in ranges from zero to extreme.

 Grey Templar wrote:

Indeed. It was totally immoral for the hospital and government to prevent him from receiving this experimental treatment. They have ZERO business in deciding when to pull the plug, that should have been solely the parents decision.

It has nothing to do with the government. You need to get a bit more familiar with what has happened rather than jumping straight into the EVIL SOCIALIST DEATH PANEL HEALTHCARE like all the US Twitter stereotypes are doing. Just need to tick off the NHS would have killed Stephen Hawking box on my bingo card.

They broke the Hippocratic oath at the very least.

I'd argue that artificially prolonging the life of someone who is suffering and getting worse is doing harm.

But, the doctors do not have the right to make that call. The parents are the legal guardians of the baby. They should be the ones to make the decision. Not the doctors. Doctors should never force a particular course of action. They need consent, and should always need consent. They should never have the right to override the people who have that right.

So yes. They did break the Hippocratic oath. They denied treatment to someone whose legal guardians wanted to continue treatment(which legally is the same as the person being treated saying he wants to continue treatment).

We could also say they should be charged with kidnapping because they held someone against their will from leaving(to go seek treatment elsewhere).


Automatically Appended Next Post:

 Henry wrote:

 Dreadwinter wrote:
This was a panel that stripped the rights of the parent,

Rights of the parents =/= rights of the child.
Sometimes those with all the love and best intentions in the world can make the wrong decisions that are harmful to the people they are trying to help.

But the government doesn't have any right to say what the child wants. The closest we can get to someone who knows what the child wants are the parents. All they wanted was to try a treatment option that was available. They were trying to improve his quality of life. They were not actively harming him, unlike all the so called "medical professionals".

And that's the argument for why female genital mutilation should be allowed, or why parents should be able to harvest organs from their children, or why parents should be able to let their children die from cancer, or why parents should be able to force an abortion on their child or force it to carry a pregnancy to term.

Parents should never be the almighty decision maker when it becomes evident that the decision is no longer about the patient. All patients deserve their own independent voice.

I think it's a bit twisted when doctors, in keeping with the Hippocratic oath's principles, refuse to prolong suffering in a situation deemed hopeless are accused of breaking the Hippocratic oath because they didn't listen to "legal guardians." Being a legal guardian does not mean you have the best interest of the patient at heart, and it doesn't mean a doctor telling you something you don't want to hear is unethical.

It is also worth to note that this same thing happens every day in hospitals around the world, including the US.

It's not even about "is this a waste of money" as it is often portrayed. It's about the ethical issue of "are you treating the patient" vs "are you treating the family and prolonging the suffering of the patient or keeping a corpse alive for their sake".

I've also taken care of way to many people that were the victims of family members who were emotionally unable to deal with the reality that was facing them. I've had to stand up to many family members who tried to bully the patient into making different decisions. I've had lawsuits threatened against me because I made sure the patient was able to use her voice, because the family was not ready for reality even though she was. It's hard enough to do when the patient is able to speak for him or herself. It's even harder to do when the patient does not have anybody speaking on his or her behalf. At some point someone needs to speak for the patient and think "what is best for him and what would he want".

Every article is talking about how hard this is for the parents, but the hard cold reality is that the emotional well being of the parents doesn't matter one single bit. It's the patient that matters and that's the only thing that matters. You don't do anything to a patient just because it will make a family member feel better. That's the problem in a lot of medicine.

There are a lot of bodies with zero quality of life who are suffering for years hooked up to machines while their body is slowly shutting down, for the simple reason that a family member is saying "I am not ready to deal with this reality yet and I'm not ready to have a dead parent". So we shrug our shoulders and say "sorry lady, gotta suffer because we don't want your daughter to be sad". Because the person who has a voice is using that voice for herself, while the patient remains voiceless.

It's easy to judge the actions of panels who make these decisions, but it's hard to actually be on them and make the decisions. The best thing that can come out of this is to realize that we need a system that is able to give a better voice to those without one, and to realize that family members are not the patient.

Fill out your dang Advanced Directives people!

This is one of the best bits I think I've ever seen on the OT. Have an exalt.

And that voice should not and never be the government or healthcare providers.

Lets say what if Charlie had been an autistic kid who had an accident and had to be put on a ventilator for the rest of his life, but he was in constant pain? do you think the government should have the right to euthanize him too even if his parents don't want you to?

This is a major slippery slope which leads to a bad place where the government can kill you just because you have what they consider a terminal illness or because "you are suffering". This is not something anybody with any sort of moral code should want anything to do with. Anybody who does is completely morally bankrupt and is the worst kind of evil.

 d-usa wrote:
And that's the argument for why female genital mutilation should be allowed, or why parents should be able to harvest organs from their children, or why parents should be able to let their children die from cancer, or why parents should be able to force an abortion on their child or force it to carry a pregnancy to term.

Parents should never be the almighty decision maker when it becomes evident that the decision is no longer about the patient. All patients deserve their own independent voice.

That isn't the argument made for female genital mutilation or any of those things. Those arguments are making the assumption that a child is the property of the parent to do with as they wish. Those often involve children who are in a very different situation from the child here.

The argument being made here is that the parents have a right to seek whatever treatment they can in order to save the life/prolong the life of their child. Those are very very different arguments and they should never, in any way, be mixed up.