Charlie Gard, the Pope, and Trump

[crescent]

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.

Depends on the length of the lifetime. Even in the US that would likely be good for a few weeks.

There is precedent for keeping a body on a ventilator "alive" using only donations: Jahi McMath.

McMath and Gard have very different medical issues, but there seem to be an uncomfortable number of similarities in the way the stories are reported (bias and sensationalism from both sides of the issue) and in the nature of the disagreement between the family and the medical staff.

A few updates on McMath:

Stories from the Trauma Bay: Jahi McMath update

In summary, Nakagawa and Schneider exhaustively evaluated everything that had been done to and for Jahi from her surgery up until her release to her mother on August 25, 2014 (there was no evidence that Jahi had been re-evaluated for brain death since that day), and all of the brain death evaluations that were done in California were deemed completely valid. There was no evidence that anything was awry in any way. They also both stated, quite definitively, that nothing that had been done since her declaration of death -- no subsequent tests, no exams done at St. Peter's University Hospital, no nothing -- could . . . well, I'll let Dr. Nakagawa sum it up:

There is nothing in McMath's medical records from Saint Peter's University Hospital that would cause a reputable expert in pediatric or adult brain death to question or reconsider the accepted brain death assessments of Dr. Robin Shanahan, Dr. Robert Heidersbach, and Dr. Paul Fisher.

He makes the same statement regarding additional tests she had done in September of 2014, none of which are accepted tests for brain death. Dr. Schneider then says this, which Nakagawa also averred:

There is absolutely no medical possibility that J. McMath has recovered, or will someday recover, from death.

And, for balance:

Is Jahi McMath alive?

At the time, I believed Jahi was dead, and so wrote. But I also wrote that if she did not deteriorate as almost all people with properly determined brain death do, my eyebrows would raise. Since then, Jahi has not deteriorated, but apparently, her body’s condition has improved. My eyebrows are above my hairline.

What the above evidence and reasoning show is…that Jahi McMath was never truly dead, even though she fulfilled the accepted medical criteria for death in December 2013. She exhibited to brain function at the time, but the cessation of at least two functions — consciousness and hypothalamic regulation of menstruation and sexual development — has proved not to be irreversible. (Shewmon’s emphasis).

Jahi McMath is a living, severely disabled young lady, who currently fulfills neither the standard diagnostic Guidelines for brain death nor California’s statutory definition of death.

I am wary of those who claim that these cases are clear in terms of the science or moral clarity. It is profoundly difficult to really know what the right thing to do is. I generally think that if the medical professionals have declared the case hopeless, but the parents can acquire non-government resources to pursue their own course of action, then they ought to be given the freedom to do so, provided there can be some certainty that this does not create or prolong the suffering of the patient.

In the case of McMath, the continued life-support has probably not caused her any suffering because she has no cognitive function - it does no harm*. I don't know whether or not that is the case for Gard.



*(except perhaps to her family, but they are adults who can suffer the consequences of their own poor choices or beliefs)

(ETA: It seems like the McMath family may be getting Medicaid to pay for life support. I didn't know that.)

(ETA 2: I zombified the McMath thread. Given the similarities, I thought people might want to discuss that again, but I don't want to hijack this thread much more than I already have.)

 

[Darat]

And back to the courts.

Charlie Gard evidence not new, hospital claims - http://www.bbc.co.uk/news/uk-england-london-40552026

 

[ponderingturtle]

I thought the ACA stopped that sort of thing. Guess I was wrong.

They just have to cite different reasons for trying to kill the guy.

 

[P.J. Denyer]

Interesting moment in the court yesterday the American doctor, who can't be named for legal reasons (WTF?!?) is claiming a 10% chance of improvement and, apparently claiming that brain damage can be reversed, however he also admitted to the Judge that he hadn't assessed the baby himself and according to a report I heard on the Today program hasn't even seen his medical records.

 

[Arcade22]

It seems that his Brain is in pretty poor condition considering how his father and mother reacted to hearing about new brain scans in court:

For Charlie Gard’s parents, the lawyer’s words were both a necessary court report and an emotion-laden update on the status of their critically ill son.

The hospital lawyer told the judge in Friday’s pretrial hearing that there was an updated brain scan on the terminally ill baby, but that it made for “sad reading.”

Charlie’s father, Chris Gard yelled “evil,” and then “I'm not f------ listening to this biased s--- anymore,” according to CNN. Charlie’s mother, Connie Yates, began sobbing as the couple stormed out of the courtroom.

The emotional outburst occurred as the Royal Courts of Justice in London becomes the latest judicial body to try to determine what will become of the terminally ill infant — and who has the final say over his fate. The results of the brain scan were not publicly disclosed. They were intended to see whether his brain damage was reversible.

https://www.washingtonpost.com/news...b-and-storm-out-of-courtroom-over-brain-scan/

Don't worry though. It must work. It will work. He'll be like new again!

 

[Trebuchet]

It's not just a river in Egypt. The parents' reaction is sadly understandable. Interference by politicians and religious leaders is just disgusting.

 

[Giordano]

I am naturally very sympathetic to the parents. But their absolute disconnect from reality represents a huge red flag to me, and I better understand the concerns that they may not be able to make the decisions crucial for the welfare of their baby. And I am (IMO) increasingly uncomfortable with the claims being made by the American doctor, who I fear may be offering false hope.

 

[Aepervius]

http://www.cnn.com/2017/07/24/health/charlie-gard-decision/index.html

The parent abandon trying, but the lawyer saying it was "too late" , the cynic in me think they will attempt to sue the hospital by pretending if the hospital had given up the kid earlier he would have had a chance, but then again this is UK where they are not so suing happy so maybe I am overly cynic....

 

[commandlinegamer]

The statement the hospital released today is implicitly critical of the doctor who proposed the experimental treatment.

http://www.gosh.nhs.uk/file/23731/download?token=TWJkSxZu

As I read it, if he had examined the scans from January which showed irreversible damage, the parents might have been spared five months of false hope.

 

[P.J. Denyer]

Section (10) seems to confirm all my worst fears about the motivation behind the offer of help from the US Doctor. I'd hoped it was just my cynicism at work.

 

[Worm]

Why was that Doctor even allowed to give evidence a couple of weeks ago? From reading that statement, he had little to no actual knowledge of the patient he was claiming to be able to treat.

not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition

Why did the court listen to anything he had to say?

Q: Have you examined the patient?
A: No.
Q: Have you read the patient's medical file?
A: No.
Q: Have you viewed the patient's brain scans?
A: No.
Q: Are you sure you're a doctor?

 

[Skeptic Tank]

Only just now finding out any real detail about this. Sounds like the child should be mercifully allowed to die and the Pope and Trump are showboating in a rather insensitive and stupid way.

 

[Arcade22]

Charlie Gard’s parents were told that their son had irreversible brain damage after he suffered seizures before Christmas, but they did not believe it. They maintained that an MRI scan in January showed the brain was normal. That has been the crux of the difference between parents and the hospital. Connie Yates and Chris Gard, bolstered by the opinions of doctors in other countries who had not seen their child, believed treatment was possible.

Their hopes came to an end at the weekend, after Michio Hirano, the US neurologist who had offered an experimental drug therapy, finally accepted an invitation that had been open since Christmas to come to London and see Charlie. He was expected to explain in court the new evidence that he said suggested nucleoside bypass therapy (NBT) could help Charlie.

Instead, the parents’ lawyer stood up to say they were ending their legal fight. He stated that Charlie’s muscle wastage meant it was too late to treat him. But Hirano, who had not seen Charlie, the scans or the medical notes when he made a first appearance in court on 13 July, had been shown new imaging of the brain damage that Great Ormond Street hospital (Gosh) had always said was irreversible.

https://www.theguardian.com/uk-news...scans-showed-charlie-gard-could-not-be-helped

Utterly delusional behaviour from the parents. They apparently refuse or refused to acknowledge the damage to his brain and think that everything would be normal if this experimental treatment increased muscle strength.

 

[P.J. Denyer]

https://www.theguardian.com/uk-news...scans-showed-charlie-gard-could-not-be-helped

Utterly delusional behaviour from the parents. They apparently refuse or refused to acknowledge the damage to his brain and think that everything would be normal if this experimental treatment increased muscle strength.

I agree, while having every sympathy for the parents I can't help but feel that their public statements, including this latest in which they seem to suggest that had GOSH allowed the treatment to go ahead straight away he would have been a 'normal healthy child', have been incredibly unhelpful and even damaging to the medical profession that was trying to help them. I think Prof. Hirano has acted deplorable, making public statements in a case like this without even reviewing the medical records should surely be misconduct and it increased the suffering of all involved. I would very much like to know if any of the £1.3million raised ends up in his hands, I'm sure he'll benefit anyway by being portrayed as the great benefactor who was prevented from saving the child by the machinations of the evil death-panels. He didn't get his early human trial, but he hasn't had to face the probability of failing either, although I'm sure that would have been GOSH's fault too.

As for the money raised, it is certainly a wonderful expression of charity and generosity, but as others have pointed out, this money will probably end up being devoted to research into an incredibly rare condition, in terms of medical research on a condition such as this it will be a drop in the ocean required, but in other areas, vaccination, provision of clean water etc, it could save the lives of thousands of children.

 

[Trebuchet]

https://www.theguardian.com/uk-news...scans-showed-charlie-gard-could-not-be-helped

Utterly delusional behaviour from the parents. They apparently refuse or refused to acknowledge the damage to his brain and think that everything would be normal if this experimental treatment increased muscle strength.

You're a day or two behind. They've agreed to terminate life support and asked to take him home to die.

 

[commandlinegamer]

You're a day or two behind. They've agreed to terminate life support and asked to take him home to die.

Which is another area of contention. The hospital say the requirements of ventilation mean that isn't possible and that they've tried to find another hospital which would take Charlie—none would. They've suggested a hospice might be the best chance of offering the parents their wish that he not die in hospital.

http://www.gosh.nhs.uk/file/23746/download?token=gyhPIaba

 

[Wudang]

Best article I've read so far.

The parents deserve only the most profound sympathy. Their unremitting rage at the hospital has to be seen in the context of mind-altering grief. In such a state, however, it is sometimes not possible to make decisions that really are in the best interests of their child. In this case, moreover, it is impossible to avoid the conclusion that their stress has been hugely compounded by one of the most cruelly ill-conceived campaigns of recent times.

http://www.melaniephillips.com/cruel-ignorant-campaign/

 

[Aepervius]

Best article I've read so far.




http://www.melaniephillips.com/cruel-ignorant-campaign/

Speaking of continuying the cruel and ignorant campaign... Especially the part about being happy that the life suport was not removed ...

https://cruxnow.com/vatican/2017/07/25/popes-hospital-says-hope-save-charlie-gard-time-allowed/

 

[commandlinegamer]

Colour me astounded that I'd agree with anything written by Melanie Phillips.

 

[P.J. Denyer]

Colour me astounded that I'd agree with anything written by Melanie Phillips.

Likewise, especially after listening to her on Moral Maze the other week where she seemed to lean toward the view that parental wishes were paramount.