Charlie Gard

[Tefal]

Don't be silly. You know the answer.

I'm sorry but I'm not being silly.

I genuinely cannot see how you have made out the guys comments that spending on cases such as Charlie's is unsustainable, as being comparative to your tale of goibg to the GO and getting some cheap generic antibiotics for an infection.

I just don't see the parallel other than there being a doctor involved.

 

[Sliver]

I'm sorry but I'm not being silly.

I genuinely cannot see how you have made out the guys comments that spending on cases such as Charlie's is unsustainable, as being comparative to your tale of goibg to the GO and getting some cheap generic antibiotics for an infection.

I just don't see the parallel other than there being a doctor involved.

The doctor involved was my GP as stated. Not GO as you said, what ever the hell that means. What is a GO ?

 

[Dis86]

The doctor involved was my GP as stated. Not GO as you said, what ever the hell that means. What is a GO ?

It's a typo for GP.

 

[Tunney]

Gard family spokesman tells Sky News Great Ormond Street Hospital claim that staff have received death threats is "arguably a cynical ploy"

This tale just gets more and more tragic.

 

[robfosters]

Gard family spokesman tells Sky News Great Ormond Street Hospital claim that staff have received death threats is "arguably a cynical ploy"

This tale just gets more and more tragic.

That spokesman should shut his trap. As if GOSH would fabricate such a thing. Almost libelous.

 

[Minstadave]

They've lost the plot.

I feel sorry for GOSH, these guys are clearly beyond reason and are so deeply entrenched Charlie's death and the reaction to it will leave everyone scarred.

GOSH won't have killed Charlie, his rare and fatal metabolic disease will, but the parents won't see it like that.

 

[vincent1989]

The whole situation is pretty tragic and very difficult to say who's 'in the right' if there even is such a thing. Before I had a child I'd definitely be in the 'let him slip away peacefully' camp but now I am a parent I think I'd be fighting tooth and nail for any possibility that my son could be saved. Perhaps in light of the current state of affairs that might be viewed as selfish and you might indeed be right, but there's a lot of emotions where it comes to a persons child. Perhaps it's also unfair of American doctors to give hope to people desperately grasping for it when in reality, even if there ever was hope, it's now at the point of being miracle work to create any kind of beneficial outcome for Charlie.

When I saw the news story today where the parents received the latest scan results in court I found that profoundly painful and can only imagine how that must have hurt, when receiving this kind of negative news it should be done privately and with time for the parents to be able to process the information, not in a courtroom. To me that almost felt vindictive on the part of GOSH/their representatives.

I suppose for me what I find so counter intuitive is that in my mind I thought Doctors were to preserve life, this whole letting people die to 'ease/prevent suffering' business seems very new and very in the realms of euthanasia which I don't agree with in the slightest. Doctors routinely perform operations or carry out treatment on people who are otherwise terminally ill in the hopes of extending life, even if the extension isn't free of suffering. If, as GOSH say, Charlie is essentially a vegetable what harm will he suffer by allowing these other, reputable, doctors a chance to learn about medications and procedures that, even if they will be pointless to Charlie, may progress medical understanding in that field further? If that's in line with the parent's wish and they have the money to pay for that treatment I don't see why they are not being allowed to proceed with that course of action.

 

[Minstadave]

I suppose for me what I find so counter intuitive is that in my mind I thought Doctors were to preserve life, this whole 'ease/prevent suffering' business seems very new and very in the realms of euthanasia which I don't agree with in the slightest.

"Do no harm" is one of the basic principles of doctoring. Prolonging suffering is harm.

There is nothing remotely new about it. The term is several hundred years old.

 

[Tosno]

The whole situation is pretty tragic and very difficult to say who's 'in the right' if there even is such a thing. Before I had a child I'd definitely be in the 'let him slip away peacefully' camp but now I am a parent I think I'd be fighting tooth and nail for any possibility that my son could be saved. Perhaps in light of the current state of affairs that might be viewed as selfish and you might indeed be right, but there's a lot of emotions where it comes to a persons child. Perhaps it's also unfair of American doctors to give hope to people desperately grasping for it when in reality, even if there ever was hope, it's now at the point of being miracle work to create any kind of beneficial outcome for Charlie.

When I saw the news story today where the parents received the latest scan results in court I found that profoundly painful and can only imagine how that must have hurt, when received this kind of negative news it should be done privately and with time for the parents to be able to process the information, not in a courtroom. To me that almost felt vindictive on the part of GOSH/their representatives.

I suppose for me what I find so counter intuitive is that in my mind I thought Doctors were to preserve life, this whole 'ease/prevent suffering' business seems very new and very in the realms of euthanasia which I don't agree with in the slightest. Doctors routinely perform operations or carry out treatment on people who are otherwise terminally ill in the hopes of extending life, even if the extension isn't free of suffering. If, as GOSH say, Charlie is essentially a vegetable what harm will he suffer by allowing these other, reputable, doctors a chance to learn about medications and procedures that, even if they will be pointless to Charlie, may progress medical understanding in that field further? If that's in line with the parent's wish and they have the money to pay for that treatment I don't see why they are not being allowed to proceed with that course of action.

Great post vincent.

It was pure vindictiveness that his latest brain scan results were announced in court without his *PARENTS* prior knowledge (oh yes, I forgot, the state is Charlie's parents now) Charlie's father was spot on when he called her evil. There is a lot of evil around Charlie's case.

 

[VincentHanna]

I do question everything now.

I wonder if it was revealed in court because they (the parents) didn't want to listen to what doctors had to say beforehand...

Apparently their 'spokesperson' is an ex UKIP candidate with an anti-NHS agenda.

I presume the Charlie Gard charity fund is paying for spokespeople and the like?

 

[kindai]

When I saw the news story today where the parents received the latest scan results in court I found that profoundly painful and can only imagine how that must have hurt, when receiving this kind of negative news it should be done privately and with time for the parents to be able to process the information, not in a courtroom. To me that almost felt vindictive on the part of GOSH/their representatives.

I am split on this, while I agree, the results should be privately given, at the same time, we know these parents are not thinking right, and would probably see it and push it instead as "Its not as bad as we thought".

I wonder if it was revealed in court because they (the parents) didn't want to listen to what doctors had to say beforehand...

I think this is happened a lot, and this may be the first time they've had the results of something put out in such a way before they can warp it to their own agenda...

 

[vincent1989]

"Do no harm" is one of the basic principles of doctoring. Prolonging suffering is harm.

There is nothing remotely new about it. The term is several hundred years old.

Allowing someone to die when there may be something that could be done about it is doing harm, as I say it may now be to late, if there even was a chance at all, it's a shame they weren't allowed to go and try months ago when the odds might have been even fractionally better than zero.

Would you say that statement supported mandatory abortions for babies with Down syndrome for example? Doctors routinely administer to patients whose quality of life will arguably be reduced or diminished post treatment, sometimes considerably so. It's very subjective what some people consider a life worth living or a chance worth taking and in my opinion that should be left up to the child's parent's in the absence of the child being able to make that decision themselves. There are also doctors who are, apparently, at odds with their colleagues in the medical profession by providing evidence that contradicts that of the GOSH representatives, it seems there is no consensus, hence how difficult this case is.

 

[vincent1989]

I am split on this, while I agree, the results should be privately given, at the same time, we know these parents are not thinking right, and would probably see it and push it instead as "Its not as bad as we thought".



I think this is happened a lot, and this may be the first time they've had the results of something put out in such a way before they can warp it to their own agenda...

I think it's easy to make those assumptions when we're not in the thick of our child wasting away before us, feeling like no one is helping, or that the people trying to help aren't being allowed to, you only have to look at the pictures of them at the birth and now to see just how ill the pair of them are, this has clearly taken it's toll on them as it would for any parent.

Great post vincent.

It was pure vindictiveness that his latest brain scan results were announced in court without his *PARENTS* prior knowledge (oh yes, I forgot, the state is Charlie's parents now) Charlie's father was spot on when he called her evil. There is a lot of evil around Charlie's case.

Yes, the fathers one word response was on the money for me, it felt evil. There are ways the representatives of GOSH could act which would convince me they were acting out of kindness, actions like that are not it and they make me doubt their whole narrative. It makes me question whether this is a face saving operation.

I listened to radio 4 this week when a cancer patient was talking about the availability of cold caps on the NHS in Ireland for cancer sufferers and the progression of stories she was given as to why they weren't. Even when a firm was offering to install and carry out the treatment in the hospital for her free of charge to the NHS to demonstrate the usefulness of it. Every time she successfully challenged the reason given she was then given another reason, as it turns out they are available and routinely used elsewhere in the UK.

I wonder if the same kind of scenario is and has occurred in this case and it's now just a case of damage limitation and attempting to avoid paying out a huge sum of compensation, now that a medical professional has stepped in with an alternate scenario and is saying something could be done or could have been done had action been taken earlier they're panicking because they didn't allow them the chance when a beneficial outcome was even fractionally possible.

 

[Minstadave]

Allowing someone to die when there may be something that could be done about it is doing harm, as I say it may now be to late, if there even was a chance at all, it's a shame they weren't allowed to go and try months ago when the odds might have been even fractionally better than zero.

There is no proven treatment, and never has been at any point for Charlie. There is an experimental drug which may let him live longer as a blind and deaf child, unable to move and unlikely to breath on his own and reliant on a ventilator, needing his secretions suctioning regularly and his breathing tube regularly changed, his feed via a feeding tube. The fact this is being considered is absurd.

Would you say that statement supported mandatory abortions for babies with Down syndrome for example?

No.

Doctors routinely administer to patients whose quality of life will arguably be reduced or diminished post treatment, sometimes considerably so.

Potentially harmful treatments (which is nearly all of them) are given when there are proven benefits. Significantly harmful procedures and treatments are given with explicit consent of the patient.

It's very subjective what some people consider a life worth living or a chance worth taking and in my opinion that should be left up to the child's parent's in the absence of the child being able to make that decision themselves. There are also doctors who are, apparently, at odds with their colleagues in the medical profession by providing evidence that contradicts that of the GOSH representatives, it seems there is no consensus, hence how difficult this case is.

Nothing in medicine is clean cut and opinions will always differ, both on treatment options and quality of life decisions. This is why the court was asked to decide.

GOSH thought the parents were not making the best decision for their patient. They have a duty to provide the best care for their patient. They asked the courts to decide and they took all the availability evidence and agreed with GOSH, multiple times.

 

[kindai]

GOSH thought the parents were not making the best decision for their patient. They have a duty to provide the best care for their patient. They asked the courts to decide and they took all the availability evidence and agreed with GOSH, multiple times.

Not just the one either, the high court, the supreme court AND the ECHR.

 

[[FnG]magnolia]

Gard family spokesman tells Sky News Great Ormond Street Hospital claim that staff have received death threats is "arguably a cynical ploy"

This tale just gets more and more tragic.

This is the bit in the movie where you'd stop watching because it's so unbelievable. I'm finding less and less sympathy for the parents the longer they draw out this tragedy.

 

[vincent1989]

There is no proven treatment, and never has been at any point for Charlie. There is an experimental drug which may let him live longer as a blind and deaf child, unable to move and unlikely to breath on his own and reliant on a ventilator, needing his secretions suctioning regularly and his breathing tube regularly changed, his feed via a feeding tube. The fact this is being considered is absurd.

may of the treatments we now take for granted weren't proven at some point in history. I can't argue with the later part of what you say and that's why, even though I'm playing devils advocate for the side of the parent's here, I am in fact on the fence.

No.

Why not? Why even screen for it at all if it's not enough reason to terminate an unborn child? Surely the fact they screen for it is because they acknowledge it as a serious genetic defect which reduces quality of life. For many years it was assumed to a vegetative state and those born with it were treated as such in our society. We now know it isn't.

Potentially harmful treatments (which is nearly all of them) are given when there are proven benefits. Significantly harmful procedures and treatments are given with explicit consent of the patient.

often the 'proven benefit' is an extension of life, even in reduced capacity. That's how much we, as humans, desire the cling to life buy even then by contrast I know people who've lost limbs that wish the doctors would have let them die rather than prolong their suffering over a life time, did they fail their patient?

Nothing in medicine is clean cut and opinions will always differ, both on treatment options and quality of life decisions. This is why the court was asked to decide.

I agree, it's a shame that a medical case is decided on by a judge, who is presumably not a doctor?

GOSH thought the parents were not making the best decision for their patient. They have a duty to provide the best care for their patient. They asked the courts to decide and they took all the availability evidence and agreed with GOSH, multiple times.

And yet this wouldn't even be a news story if they'd happened to have the money early on, happened to live in America, and happened to know the doctor proposing the treatment before they took Charlie to an NHS hospital and if the same result was inevitable then so be it, at least every avenue open to them had been explored. I find it scary that because they happened to take Charlie there (by virtue of that being their local, specialized hospital) they are denied treatment that they might have received elsewhere.

The daily mail articles on this case explain the doctors right to this decision by using the scenario of the Jehovah's Witness child being given blood transfusions. I'd argue that that scenario is entirely different. In that scenario they are doing everything in their power to preserve life, what ever the cost and that is appropriate. It doesn't feel right to use those same powers to advocate death. It should be the parent's decision as long as there is a medical professional who agrees with them.

 

[Psycho Ned]

End of the day there are never going to be any winners in this case no matter what happens.

The parents lose as they will never get their dream of Charlie somehow magically recovering.

Charlie loses as the poor child will lose his life.

GOSH loses as they will eventually have to put an end to all of this by withdrawing ventilation and suffer a ton of misguided backlash from misguided people. They'll also get a load of mud thrown at them (which due to patient confidentiality they can't really defend themselves from) when the parents inevitably get on the media merry go round of TV shows and newspaper deals when this is over.

This court case needs to end next week with a definitive verdict and that's the end of it one way or the other, this saga dragging on for months and months on end is causing nothing but distress and heartbreak for all involved.

 

[Tunney]

Allowing someone to die when there may be something that could be done about it is doing harm, as I say it may now be to late, if there even was a chance at all, it's a shame they weren't allowed to go and try months ago when the odds might have been even fractionally better than zero.

The odds were always zero. The original American doctor who said that he could help changed his mind as soon as he learned the extent of Charlie Gard's condition. Unfortunately, his original claim that he could help is why we're in this terrible situation now. It gave Charlie Gard's parents false hope.

His poor parents are getting awful advice from people with an agenda against the NHS and socialised medical care in general. His parents are being exploited.

 

[vincent1989]

The odds were always zero. The original American doctor who said that he could help changed his mind as soon as he learned the extent of Charlie Gard's condition. Unfortunately, his original claim that he could help is why we're in this terrible situation now. It gave Charlie Gard's parents false hope.

His poor parents are getting awful advice from people with an agenda against the NHS and socialised medical care in general. His parents are being exploited.

That's my fear. Though I do feel we should not be willing to settle for equality of outcome, I don't begrudge millionaires spending their own money on better medical treatment than whats available to me, nor would I seek to take that away from them which is why I do argue that if they have the money to attempt this treatment, and there is a professional who advocates it, then they, as the parents, should be allowed to seek that treatment for their child.