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.

 

[Fareal]

The doctors offering the experimental treatment are clear that Charlie's condition cannot be cured and there is not even a particularly good chance that it will extend his life. The parents disagree with Charlie's existing medical team's assessment that Charlie is in pain and distress.

The doctors in the US are clear that having Charlie to administer the treatment to would assist them in the possible further development of the treatment.

The law in the UK regarding children and medical treatment is absolutely clear that a child cannot be administered a medical treatment, experimental or otherwise, unless there is a demonstrable benefit to the child being treated.

I will be surprised if this ruling is overturned in Strasbourg.

I feel desperately sorry for the parents and hope that Charlie is able to live the rest of his short life in comfort and with dignity.

 

[Pikimon]

Is the kid in a Right To Die state?

 

[Ravenor]

Is the kid in a Right To Die state?

England so he's got a right to grumble under his breath and keep going in the finest tradition of the stiff upper lip.

 

[Pikimon]

England so he's got a right to grumble under his breath and keep going in the finest tradition of the stiff upper lip.

Will he at least get to wait in a queue while he dies

 

[Ravenor]

Will he at least get to wait in a queue while he dies

But of course!

 

[Slowboat to China]

This seems insane. Even if there would be no demonstrable benefit to Charlie himself, having him undergo the treatment could indeed help in its development and potentially save some other child's life. It would like organ donation, really. Where's the harm in that? Can the hospital and the court really overrule the parents that way?

 

[Fareal]

This seems insane. Even if there would be no demonstrable benefit to Charlie himself, having him undergo the treatment could indeed help in its development and potentially save some other child's life. It would like organ donation, really. Where's the harm in that? Can the hospital and the court really overrule the parents that way?

Yes they can. The courts sole direction is to ensure the best interests of the individual child are served. If there is no demonstrable benefit to Charlie himself in having the treatment, his parents are not allowed to submit him to experiments that may possibly serve the public good.

Live organ donation by a child requires consent of a court, and in practice is extremely rare for everything except bone marrow between siblings, because it is very rarely the case that it will be in the interest of a live child to be deprived of non regenerative tissue.

 

[More Spicey Than Coolwhip]

Don't got much to say about this other than it really convinced me to have a second drink about now.

 

[76LD910]

The law in the UK regarding children and medical treatment is absolutely clear that a child cannot be administered a medical treatment, experimental or otherwise, unless there is a demonstrable benefit to the child being treated.

I'm not entirely sure how much better his chances of getting treatment in another European country would be either. My understanding is that European countries tend to take a "if its not proven to be safe, it cant be done" approach. Whereas the US takes an "If its not proven to be harmful, you can do it" approach. At least that's my understanding of how food and drugs are regulated, i don't know if experimental medical procedures would be treated similarly.

 

[Maiden-TieJuan]

The whole thing from the American side seems to be that it WONT improve his condition, but it will help them to study how he responds to the treatment and THAT may help children in the future. Basically, human testing on a child. The UK, from what I see, is saying that even the Doctors are telling them that the treatment wont help the child. The only foreseeable useful thing that this can do is in research purposes. The parents are arguing that it MAY help their son, which all doctors are telling them it more then likely wont.

So. The UK is viewing it as human medical trial then? I can see why they would turn it down from that point of view. The parents are deluding themselves if they think they will see any difference in their child, but a parent will move heaven and hell to help their child. I feel for them, I do. I have 2 kids, and Gawd help anyone who stood in my way of getting my kids the help they needed. But. Eventually you have to see reason. I dont think that the Human Rights court will hear their case, and if they do it will go the same as this one did.

 

[Fareal]

The whole thing from the American side seems to be that it WONT improve his condition, but it will help them to study how he responds to the treatment and THAT may help children in the future. Basically, human testing on a child. The UK, from what I see, is saying that even the Doctors are telling them that the treatment wont help the child. The only foreseeable useful thing that this can do is in research purposes. The parents are arguing that it MAY help their son, which all doctors are telling them it more then likely wont.

So. The UK is viewing it as human medical trial then? I can see why they would turn it down from that point of view. The parents are deluding themselves if they think they will see any difference in their child, but a parent will move heaven and hell to help their child. I feel for them, I do. I have 2 kids, and Gawd help anyone who stood in my way of getting my kids the help they needed. But. Eventually you have to see reason. I dont think that the Human Rights court will hear their case, and if they do it will go the same as this one did.

Yes. To break it down to the most simple medico-legal argument: you cant give consent for a third party to be medically experimented on in UK law if there is no reasonable prospect that the treatment will be of benefit to the third party themselves.

It does not matter that the third party is your minor child. The rights of parents in UK law exist explicitly to facilitate the exercise of parental responsbility for the child. The best interests of the child are enshrined in legislation as the courts paramount concern in any proceedings involving issues of a childs welfare.

 

[Mesh Gear Fox]

Even if there would be no demonstrable benefit to Charlie himself, having him undergo the treatment could indeed help in its development and potentially save some other child's life. It would like organ donation, really. Where's the harm in that?

The problem is that a single case isn't going to give you a whole lot of results. The costs of transporting him over here for highly experimental treatment would be tremendous. It's a rare disorder, but there are patients here they can use for study rather than flying someone thousands of miles on a medical aircraft. In short, he's nowhere near unique enough that this whole thing would be beneficial for study.

 

[Slowboat to China]

Yes they can. The courts sole direction is to ensure the best interests of the individual child are served. If there is no demonstrable benefit to Charlie himself in having the treatment, his parents are not allowed to submit him to experiments that may possibly serve the public good.

But they're saying that he is, effectively, already dead. His tube's being removed. Wouldn't it make more sense to let them do the therapy, for even the slimmest possible chance of an improvement or even just learning something about the condition? Given a choice between 100% certainty of death and 99.8% certainty of death, I know which one I'd pick.

The problem is that a single case isn't going to give you a whole lot of results. The costs of transporting him over here for highly experimental treatment would be tremendous. It's a rare disorder, but there are patients here they can use for study rather than flying someone thousands of miles on a medical aircraft. In short, he's nowhere near unique enough that this whole thing would be beneficial for study.

The article did say they raised 1.5 million pounds for treatment. Why not let them use it?

Sorry, guys, I'm not trying to be an argumentative moralfag or anything. But I genuinely don't understand the court's position.

 

[Cryin RN]

This seems insane. Even if there would be no demonstrable benefit to Charlie himself, having him undergo the treatment could indeed help in its development and potentially save some other child's life. It would like organ donation, really. Where's the harm in that? Can the hospital and the court really overrule the parents that way?

The cost of this child's treatment, which would not prolong his life, would pay for thousands of smaller procedures for other sick children who have less sexy disorders. That physician's time is desperately needed for poorer children who have disorders they can actually live through. This isn't the Star Trek future and we don't have free holo-doctors are around to do massively complex procedures for everyone using their infinite resources. Clinician time must be rationed.

 

[repentance]

The article did say they raised 1.5 million pounds for treatment. Why not let them use it?

Sorry, guys, I'm not trying to be an argumentative moralfag or anything. But I genuinely don't understand the court's position.

The treatment can't reverse the severe brain damage which has already occurred. He cannot breathe on his own. He cannot see, cry, hear, or swallow. His kidneys do not work. Even if the treatment could prevent further damage occurring, he would just be maintained on life support until he died from overwhelming infection.

It's the very definition of futile care and the only "benefit" would be delaying the inevitable a little longer for parents who are still in denial. Medical decisions are not supposed to be made for the benefit of anyone except the patient, and parents are supposed to do what is in their child's best interests, not their own.

It is utterly unethical to allow a child to be used for purely research purposes when he cannot possibly benefit from the experimental treatment. If the parents Charlie to contribute to the body of research, they can donate his body for research after his death.

The cost of this child's treatment, which would not prolong his life, would pay for thousands of smaller procedures for other sick children who have less sexy disorders. That physician's time is desperately needed for poorer children who have disorders they can actually live through. This isn't the Star Trek future and we don't have free holo-doctors are around to do massively complex procedures for everyone using their infinite resources. Clinician time must be rationed.

In general, yes, but in this case the money has been raised specifically for Charlie's treatment and the researcher isn't going to be off treating something else if Charlie's not treated. He's occupying a PICU bed in the UK which could be put to better use, but no-one would be deprived of care due to him going to the US. In this case, it gets down to ethics rather than money or other resoucrces.

 

[Male Idiot]

The condition is genetic, so there is no cure for your genes yet and there is brain damage. Even if he lived, he would need constant attention and would not be able to contribute to the genepool. The hospital made a hard but logical decision.

 

[Lorento]

http://www.bbc.co.uk/news/uk-england-40225132

The ECHR has granted Charlie life support until Tuesday.

 

[RomanesEuntDomus]

http://www.bbc.co.uk/news/uk-england-40225132

The ECHR has granted Charlie life support until Tuesday.

I don't know how to feel about this.
On one hand, life is precious, but on the other, if it's only pain and death is the only relieve, it's just hard to decide what's better. As mentioned earlier by another Kiwi, I just hope they treat him in a way that his existence at least has a bit of dignity. I feel for the parents. They hold on to something that has basically no benefits for their child, but they cling to this out of a kind of desperation that I wouldn't wish upon my worst enemy.

 

[AnOminous]

I don't know how to feel about this.

If they don't do that, they'll have no case to decide.