Charlie Gard

[Ausage]

Wasn't sure where to post this. Figure it'll generate enough discussion to warrant its own thread.

https://www.theguardian.com/uk-news/2017/jun/29/charlie-gard-parents-life-support-withdrawn-friday

To summarize, Charlie Gard is a 10 month old child with a rare disease that causes severe brain damage and muscle wasting. Doctors have told his parents there's nothing more they can do and are looking to turn off his life support. While tragic, the real point of contention is that Charlie's parents want to take him to the US to undergo experimental treatment (with funds raised from a Gofundme campaign) but have been blocked first by the doctors at the hospital and later by several court challenges, who ruled on the basis that the treatment would have no realistic chance of improving Charlie's condition and would subject him to inhumane suffering. Charlie's life support will soon be turned off and in a somewhat ghoulish fashion the family's wish to take their child home to die in peace has not been granted.

The situation is obviously horrific, but I was interested in CW's thoughts about this. Is it right for authorities to intervene in a child's treatment in this way?

 

[Daemon]

Assuming the professionals are correct with their assessment of his chances, I believe they're taking the most humane option.

At the same time I feel nothing but absolute sympathy for the parents. Can't even begin to imagine what they've been through.

 

[Shri]

I can see how the parents' fantasy of trying to save the kid by doing everything they can works but I also don't want the child to suffer. No one should ever be in that position.

 

[Ausage]

Ok, I'll spice up this thread a bit then. I think this is a disgusting decision.

Even if we accept the notion that authorities should strip a parents rights over their children (itself an extremely fraught concept), I think we'd all agree there needs to be an extremely clear and obvious danger to the well being of the child in order to do so. If the doctors were offering an accepted medical procedure as an option and the parents wanted to try something experimental then that'd be an argument that could be made but the child is being left to die. The bar for denying the parents wishes needs to be enormously high here.

In terms of the suffering the child is enduring (or would endure if the treatment was attempted), there's no way to gauge that conclusively. The child is unable to speak, hear, see or move, how can anyone have any knowledge of the level of suffering it's enduring? Again, if we were talking about the child not being subjected to certain death I'd be willing to accept probables but we're not. In terms of whether the treatment would be successful, there's clearly a group of doctors that think there's no realistic hope of the child recovering, I doubt the doctors offering to do the treatment would agree. I fail to see how it's ok to infringe on the rights of the parents in such a profound way when both the chances of the child's survival and level of suffering it's enduring are very much in doubt.

Not letting the kid die in his own home is just the ghoulish icing on this revolting situation.

 

[DriveClub]

I would side with the parents in this case I think

 

[Daemon]

Ausage, how much do you know about the disease? What about nucleoside therapy? How do you know that doctors can't guage whether the baby is suffering?

I couldn't answer any of those which is why I chose to assume the professionals are right.

Doctors aren't evil people. This decision has gone through so many professionals. I find it really hard to believe they made this decision without considering that the treatment would offer him a chance to live.

 

[Burgey]

Don't know the answer to this one, other than to think how ****ing terrible it must be to have your child so ill.

 

[Ausage]

Ausage, how much do you know about the disease? What about nucleoside therapy? How do you know that doctors can't guage whether the baby is suffering?

I couldn't answer any of those which is why I chose to assume the professionals are right.

Doctors aren't evil people. This decision has gone through so many professionals. I find it really hard to believe they made this decision without considering that the treatment would offer him a chance to live.

Not a huge amount. Just that it's an extremely rare disease that causes degeneration in the brain and muscles. My understanding is that the main way to pass judgement on how much pain a person is experiencing is through their reactions, either physical, verbal etc which isn't applicable in this case. I'm sure one of the doctors against the treatment could give a very succinct explanation as to why going to the US is against the best interest of the child, but the doctors willing to perform said treatment would probably give you an equally succinct explanation as to why it was worth a shot. Opinions regularly differ on the best course of treatment in all sorts of situations.

I guess my point isn't that the child is not experiencing pain, nor that the doctors are evil or even that there's a remotely decent chance of the child surviving the treatment. Just that the bar for infringing on the rights of the parents to make the decision they judge to be in the best interest of their child needs to be extremely high, particularly when the alternative is certain death.

 

[zorax]

I don't see how this decision was the government's to make.

If they have declared they can do nothing but watch the kid die, surely the parents then have the right to decide where and how the kid dies? I don't know anything about the experimental procedure, it might have been exceedingly cruel or something, and if it was then there is some justification for the government to step in and not let the parents put the child through that, but to not let the kid die at home? That seems terrible to me.

 

[fredfertang]

This is an interesting case on every level. I'd like to look into it but, as a parent, I just can't face it - FWIW I've got no doubt that the court have come to the right decision on the evidence they've heard.

What I don't really understand though is why the case has come to court at all. I'm assuming that US doctors have the same or similar ethics to those here and that this experimental treatment isn't something out of Josef Mengele's case book. They might well be wrong, as that presumably is the thrust of the evidence, but I do think the parents should be given the choice

The cynic in me also feels the need to make the observation that in this time of supposed austerity why is the tax paper paying for treatment when private funding is available for and more importantly if the state wants to waste so much money on lawyers why the **** don't they put it into the legal aid system that they've spent the last five years destroying

 

[Prince EWS]

Ok, I'll spice up this thread a bit then. I think this is a disgusting decision.

Even if we accept the notion that authorities should strip a parents rights over their children (itself an extremely fraught concept), I think we'd all agree there needs to be an extremely clear and obvious danger to the well being of the child in order to do so. If the doctors were offering an accepted medical procedure as an option and the parents wanted to try something experimental then that'd be an argument that could be made but the child is being left to die. The bar for denying the parents wishes needs to be enormously high here.

In terms of the suffering the child is enduring (or would endure if the treatment was attempted), there's no way to gauge that conclusively. The child is unable to speak, hear, see or move, how can anyone have any knowledge of the level of suffering it's enduring? Again, if we were talking about the child not being subjected to certain death I'd be willing to accept probables but we're not. In terms of whether the treatment would be successful, there's clearly a group of doctors that think there's no realistic hope of the child recovering, I doubt the doctors offering to do the treatment would agree. I fail to see how it's ok to infringe on the rights of the parents in such a profound way when both the chances of the child's survival and level of suffering it's enduring are very much in doubt.

Not letting the kid die in his own home is just the ghoulish icing on this revolting situation.

So there's my post taken.

 

[Top_Cat]

It's not a disgusting decision, it's entirely reasonable and within the law. The outcome sucks and it's a horrific situation for all concerned but give some credit to the people who draw a paycheck for this.

Incidentally, the US Dr himself, understandably unwilling to make his name a matter of public record, had offered the theoretical possibility at some stage that it could show some benefit. But, upon actually examining the data, agreed the baby was terminal. Although he did hedge a bit by saying if the kid were in the US, he'd have had a look at him but it seems like he was just applying scientific caution i.e. Gard's specific case and this specific treatment hadn't been tested via clinical trial and he hadn't seen the patient himself so he couldn't say for sure. There is the theoretical possibility that they could have flown him to the US and been rejected after he had a chance to examine him.

Be clear, this isn't an experimental treatment for this illness with a low probability of success, it's an experimental treatment for an entirely separate illness. There may be some cancer drugs that could treat epilepsy but you can't just shove someone full of them and hope for the best without some evidence to suggest it'll do anything. That's not medicine.

What I don't really understand though is why the case has come to court at all. I'm assuming that US doctors have the same or similar ethics to those here and that this experimental treatment isn't something out of Josef Mengele's case book. They might well be wrong, as that presumably is the thrust of the evidence, but I do think the parents should be given the choice

The justification was laid out in the judgement (from page 7). Initially the hospital was in favour of contacting the neurologist in question, in fact, but the little fella worsened and they decided it would prolong suffering. The parents disagreed, hence court. This is a big topic in the US, where there have been ethical judgements with parents wanting to pull out all stops, money is no object, etc. But in the UK they tend to take a more measured approach and medicine is not and has never been about prolonging of life at all costs, of course. The parents have rights but they're not the only ones with responsibility for a patient's welfare. To my knowledge, there's no piece of paperwork which any Dr can sign that allows them to wash their hands of a case and say good luck, citizens.

I can't even imagine what the parents are going through so I can only trust that the decision to not let him go home was made to avoid prolonging any suffering.

 

[Daemon]

I tried to look for more detailed information but all I found were tabloid articles. Could you link me to where you got all that from?

 

[silentstriker]

There are certainly ways of telling whether a child is suffering even if they cannot communicate with you.

 

[Anil]

it's the worst decision a parent would ever have to make and based on everything i read, i am not sure they are doing the right thing...

 

[silentstriker]

It's hard to know without knowing the medical details in full, but I am definitely on the side of the hospital/courts. Kids with these diseases often suffer quite a bit before they pass away and it's very hard to see. With that said, I obviously very much sympathize with the parents and I can't imagine being put in such a position and don't blame them at all.

 

[Furball]

Not allowing the parents to take their kid home is weird. I don't get the point of that decision.

As for his treatment, I know in their shoes I would try anything if I thought it might work. I hope that they're not potentially being exploited for financial gain if they do try and go ahead with whatever treatment they're trying to get in the US.

 

[silentstriker]

Yeah I think that's also a key point (though not necessarily here as I think the people they are talking about are reputable clinic/places). With all due respect to libertarian principles, it's very important to have regulation and oversight (as in this case) in healthcare so people just don't get fleeced for all their money by snake oil artists when they're in a vulnerable state. Like when your child is dying and most parents would go bankrupt without even thinking about it if it meant they could be saved. The state does have a responsibility there I think.

 

[Top_Cat]

Heard someone say that if this happened in the US, the kid would have died months ago because his parents would have been bankrupted paying for his care.

 

[FaaipDeOiad]

I'm not really a "sanctity of life" type of person honestly so I'm quite ok with doctors allowing a child to die if they don't think there's a realistic chance of helping them, especially if they think the treatment would cause unnecessary suffering.

The parents rights issue is an interesting one though - I'm certainly fine with the state taking the decision making out of parents hands in certain cases. Imagine for example if Charlie was treatable, but the parents wanted to go with faith healing or something instead, likely causing him to die. Presumably most people would be fine with the state preventing them from choosing that on behalf of their child. I don't know if I really have strong feelings about this case though, it certainly doesn't sound great to have denied their requests on both issues in succession. But I do think no chance of survival + potential increased suffering should result in doctors refusing to go with a certain treatment.