Charlie Gard, the Pope, and Trump

[Information Analyst]

For the benefit of non-UK posters, the story of baby Charlie Gard has been a regular but increasingly weary feature of the news here for the last nine months or so. Born with mitochondrial DNA depletion syndrome, he has been subject to a protracted legal battle between the parents - who want to take him to the United States for a treatment that has not yet even been tested on animals, let alone humans - and the Great Ormond Street Hospital for Children, where is is being kept on live support.

As reported by the BBC (as per link below), his condition:

"... is a rare genetic condition which causes progressive muscle weakness and brain damage because he is unable to get energy to his organs.

Doctors have said he now cannot see, hear, move, cry or swallow and has irreversible brain damage. His lungs are only able to keep going because of the treatment he is receiving."

On 11 April the High Court of England & Wales found that he should be allowed to die, and on 25 May the Court of Appeal refused to reverse the decision. Both the UK Supreme Court and the European Court of Human Rights have agreed with the earlier ruling.

Now both the Pope and Donald Trump have weighed in:

BBC News: Charlie Gard - Pope and Trump offer parents support

"Pope Francis has called for the parents of terminally-ill Charlie Gard to be allowed to "accompany and treat their child until the end".

Chris Gard and Connie Yates had been expecting their 10-month-old's life support to be turned off on Friday.

But Great Ormond Street Hospital said it will continue Charlie's care to allow the family to spend more time with him.

Meanwhile, President Donald Trump tweeted his support on Monday.

He wrote: "If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so." "

 

[The Great Zaganza]

The path forward is clear:

Trump must send Seal Team Six to Great Ormond Street Hospital right now to liberate the child and, if possible, kill as many doctors and nurses as possible in the process.

 

[P.J. Denyer]

I saw this yesterday. How wonderful that religious and political figures have weighed in, I'm sure they have much more informed opinions than the doctors who treated and oversaw the child's case or the judges in the UK and Europe who made and upheld the decision. Meanwhile Charlie (and his parents) continue to suffer. I have nothing but sympathy for his parents, what they are going through is terrible but no-one can expect them to be objective about this, that is why we have medical review panels and courts to adjudicate in these cases on behalf of the patient.

Regarding the Pope's offer, the hospital concerned currently has a spot of controversy -:https://apnews.com/9a0647481aee487e99c9b3facf6c6691

I'm almost surprised that Trump didn't refer to 'Death Panels' in his tweet. For any Americans who've heard the claims about how Britain's socialised medicine has such things I present exhibit A for the defense-:
http://www.mirror.co.uk/science/stephen-hawking-speech-cambridge-university-10728278

 

[theprestige]

Sorry, you lost me: Your defense of NHS death panels is that they sometimes allow a Stephen Hawking to live?

 

[Information Analyst]

Sorry, you lost me: Your defense of NHS death panels is that they sometimes allow a Stephen Hawking to live?

More the case that "NHS death panels" self-evidently do not exist, as the NHS provides continuing treatment in the vast majority of cases. It is, though, only the extreme no-hope cases that tend to make the news.

 

[Craig B]

Sorry, you lost me: Your defense of NHS death panels is that they sometimes allow a Stephen Hawking to live?

You mean that there are death panels in the uk that bump off scientists? But sometimes permit them to survive. What does Hawking think of this? In 2009 the Daily Telegraph quoted him

The British physisist (sic) spoke out after Republican politicians lambasted the NHS as "evil" in their effort to stop President Barack Obama's reforms of US health care which will widen availability of treatment but at a cost to higher earners who will pay higher insurance premiums.
"I wouldn't be here today if it were not for the NHS," he said. "I have received a large amount of high-quality treatment without which I would not have survived."​

Not a commie death panel, but a "life panel" providing services to people who would be dead if they had to bear the personal cost of the treatment and care they need.

 

[P.J. Denyer]

More the case that "NHS death panels" self-evidently do not exist, as the NHS provides continuing treatment in the vast majority of cases. It is, though, only the extreme no-hope cases that tend to make the news.

Thank you, that's exactly how I intended it to be taken. I didn't think the fact that I'd been slightly ironic made my post completely impenetrable.

 

[Darat]

For the benefit of non-UK posters, the story of baby Charlie Gard has been a regular but increasingly weary feature of the news here for the last nine months or so. Born with

...snip..."

What I have found interesting is the legal decisions and comments about how far a parental rights go to determine what is best for a child and the duty the state has in regards to the child's rights.

If the proposed treatment was just not available in the UK then there would have been no issue with the child going elsewhere for the treatment. The issue here has revolved around whether the treatment was in fact a treatment with any kind of likelihood of success. My understanding is that the treatment was really an experiment, one which even if it stabilized the child would have no way to undo the terrible damage already inflicted on the child by his genetics.

 

[P.J. Denyer]

What I have found interesting is the legal decisions and comments about how far a parental rights go to determine what is best for a child and the duty the state has in regards to the child's rights.

If the proposed treatment was just not available in the UK then there would have been no issue with the child going elsewhere for the treatment. The issue here has revolved around whether the treatment was in fact a treatment with any kind of likelihood of success. My understanding is that the treatment was really an experiment, one which even if it stabilized the child would have no way to undo the terrible damage already inflicted on the child by his genetics.

That's my understanding too, it would basically prolong the inevitable.

Eta: And the Papal offer is basically to allow the child to continue to live in the same state until he reaches the point that even life support can't sustain him.

 

[sphenisc]

That's my understanding too, it would basically prolong the inevitable.

That's pretty much the definition of medicine.

 

[TragicMonkey]

So these offers of support from these two extremely wealthy men, are they just moral support, or are they actually offering to pay for the cost of the child's care?

 

[Worm]

and for how long?

I'm in no position to know, but conceivably with enough funds they could keep this poor child alive effectively indefinitely?

 

[shemp]

and for how long?

I'm in no position to know, but conceivably with enough funds they could keep this poor child alive effectively indefinitely?

Well, for certain definitions of "alive." By other definitions, this unfortunate child is already dead.

 

[pgwenthold]

What I have found interesting is the legal decisions and comments about how far a parental rights go to determine what is best for a child and the duty the state has in regards to the child's rights.

If the proposed treatment was just not available in the UK then there would have been no issue with the child going elsewhere for the treatment. The issue here has revolved around whether the treatment was in fact a treatment with any kind of likelihood of success. My understanding is that the treatment was really an experiment, one which even if it stabilized the child would have no way to undo the terrible damage already inflicted on the child by his genetics.

The doctors in the US testified that the treatment, albeit experimental, would not have any expectation to succeed, and they won t do it.

But what do they know? The parents still have hope, therefore they should be able to force doctors to do a treatment that won t work. It something like that.

 

[The Great Zaganza]

The doctors in the US testified that the treatment, albeit experimental, would not have any expectation to succeed, and they won t do it.

But what do they know? The parents still have hope, therefore they should be able to force doctors to do a treatment that won t work. It something like that.

Fake doctors - sad.

 

[Skeptic Ginger]

What I have found interesting is the legal decisions and comments about how far a parental rights go to determine what is best for a child and the duty the state has in regards to the child's rights.

If the proposed treatment was just not available in the UK then there would have been no issue with the child going elsewhere for the treatment. The issue here has revolved around whether the treatment was in fact a treatment with any kind of likelihood of success. My understanding is that the treatment was really an experiment, one which even if it stabilized the child would have no way to undo the terrible damage already inflicted on the child by his genetics.

Here are a few issues the news reports are missing:

We deny experimental treatment all the time, it keeps the charlatans from ripping off desperate people with fraudulent snake oil.

Take home to die or even transferring to the US includes sending him home on the ventilator which without he cannot live long enough to get out of the room.

How many other people with kids who need expensive or even inexpensive care to survive and cannot get it can see this news event? What they must be thinking.

I get Trump's butting in to ride the publicity coat tail, it's his Terri Schiavo moment. But rather than engendering the Evangelical base, one has to wonder how people about to lose their medical insurance are seeing it?

 

[Skeptic Ginger]

So these offers of support from these two extremely wealthy men, are they just moral support, or are they actually offering to pay for the cost of the child's care?

They're safe, the family has over a million in donations already.

 

[Skeptic Ginger]

and for how long?

I'm in no position to know, but conceivably with enough funds they could keep this poor child alive effectively indefinitely?

No, his organs are all failing already. He won't live long regardless.

 

[P.J. Denyer]

That's pretty much the definition of medicine.

I generally hope for remission of symptoms, at the very least the prolonging of an acceptable standard of life.

 

[TragicMonkey]

They're safe, the family has over a million in donations already.

Healthcare must be really cheap over there if a million is sufficient for a lifetime of care for a patient who can't even breathe.