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» Ship of Fools   » Community discussion   » Purgatory   » Medical treatment--who gets what, who decides, who pays? (Page 8)

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Source: (consider it) Thread: Medical treatment--who gets what, who decides, who pays?
L'organist
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posted by Orfeo
quote:
In that context, describing an attempt at actual treatment as "harm" is... well frankly it's perverse. I'm fine with arguing it was pointless or futile, but describing it as harmful when the alternative is certain death takes some serious mental juggling.
The argument was not about "harm" in that sense, it was about causing "unnecessary suffering" which is fundamentally different.

It was apparent to the multi-disciplinary team at GOSH as early as last December that Charlie Gard had suffered irreversible brain damage and that the effects on him had been catastrophic, causing him to become blind, deaf, mute, and suffer profound damage to his kidneys. Of gravest concern to them were the seizures which he was beginning to suffer with increasing frequency (again indicative of profound neurological damage) which caused his body to spasm or fit, which was probably causing the infant pain: but because of his inability to make any noise it was impossible to tell with any degree of certainty when, and to what degree, he was in pain.

GOSH eventually went to court because after 3 months they had been unable to get through to the parents that the involuntary spasms were not normal movement, or that the lack of any outward sign from their child was not a sign that he was not in pain. As physicians dedicated to the relief of suffering I imagine they were becoming increasingly haunted that the acts of ventilating and tube feeding the child, thus keeping him alive, were in fact prolonging and worsening his suffering and causing him to feel pain which he was unable to express.

And moving the child to the US - leaving aside the logistical difficulties of getting him there - was almost guaranteed to worsen the pain he was likely to be suffering, but without the prospect of any positive improvement in his condition. In other words, the act of ventilating Charklie, thus enabling life to continue, was the very act that was enabled these painful seizures to continue.

In my book, that constitutes causing harm - certainly that was the view taken by the judge.

[ 30. July 2017, 23:25: Message edited by: L'organist ]

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orfeo

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quote:
Originally posted by L'organist:
certainly that was the view taken by the judge.

Was it?

I will have to go back and look at the judgement before agreeing.

Whether it was in the best interests of the child is not the question I'm raising here. Because my issue is not with the judge's findings about futility, but querying on what basis the hospital could step into this treatment decision.

If we're going to say they could override the parent's wishes because the parents wanted something harmful, we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.

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Leorning Cniht
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quote:
Originally posted by orfeo:

If we're going to say they could override the parent's wishes because the parents wanted something harmful, we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.

The harm was ongoing. GOSH believed that Charlie was suffering significant ongoing pain, and that prolonging his death was causing him unnecessary extra suffering.

The judge, in his ruling, references Charlie's parents as having accepted that in his then current condition, Charlie's life was not worth prolonging.

In other words, the harm was not in question. The question was whether the nucleoside treatment would help Charlie (extra harm to Charlie in the cause of an improved quality of life might be worth it. Extra harm that gets nowhere - not so much.)

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mdijon
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quote:
Originally posted by orfeo:
I'm fine with arguing it was pointless or futile, but describing it as harmful when the alternative is certain death takes some serious mental juggling.

What if it causes pain and suffering in the attempt?

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mdijon
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quote:
Originally posted by orfeo:
we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.

There was quite a lot of discussion about the possibility that Charlie could still feel pain, with one witness thinking that he could. (In a sense it's a catch 22 - if he's so far gone he can't feel pain then the treatment is doubly futile, if he's not so far gone then the treatment might well cause suffering.)

There was the point that the bag of stuff they want to give has never been given to a rat before, and therefore they have no idea what sort of local or systemic reaction to expect in a human being. There is a risk of suffering there.

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mdijon
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quote:
Originally posted by mdijon:
Sure, he's a quack.

quote:
Originally posted by Dave W.:
quote:
a person who dishonestly claims to have special knowledge and skill in some field, typically in medicine.
I don't think that's a reasonable term for Dr Hirano.

I think his claims of benefit were dishonest, and imply a lack of expertise in how a new treatment is worked up. He had no basis for claims of 10% chances of benefit, or anything else that he claimed. This was a drug that hadn't been given to laboratory rats for this condition, that was unlikely to cross the blood brain barrier, and he hadn't bothered to inform himself adequately regarding the case.

I appreciate he has a prestigious position and has expertise in neurology, but his behaviour in this instance is quackery.

If it walks like a duck...

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Golden Key
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IIRC, I read an article about a kid with another mitochondrial disease who was helped by the treatment. I'll look for it, but it may take a couple of days.

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mdijon
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From quetzalcoatl's earlier link;
quote:
The specific variant of mitochondrial DNA depletion disease which Charlie Gard has/had, RRM2B, affects both muscle and brain, and has never been effectively treated, much less reversed or “cured”. There is no known cure for mitochondrial disease, though there are treatments of varying efficacy for some variants. The “treatment” people thought was being offered by Professor Michio Hirano is not only untested on humans, it’s untested on mice, as the judge noted — in a passage of his July judgment in which he appears supremely pissed off with Prof Hirano for having strung out the court and especially the parents for more than six month since January (when Gt Ormond St invited him to come and examine Charlie, an invitation which he never took up)


[ 31. July 2017, 05:08: Message edited by: mdijon ]

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Golden Key
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Here:

"This man’s son tried the experimental treatment Charlie Gard’s parents want" (CNN Wire, via KFOR).

Arthur Estopinian says Arturo, his son, was helped by the treatment--and he was the one who put the Gards in touch with Dr. Hirano.

Additional perspectives:

"Why Charlie Gard’s case is so disturbing to Americans" (STAT magazine of medical journalism).

"Mito Hope & Help" (Support site on Facebook).

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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?"--Dragon, "Jane & the Dragon"
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mdijon
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From the same article:
quote:
In a tissue biopsy, mitochondrial DNA levels were found to be 6% of normal, and falling. (MDDS is diagnosed by levels below 35%.) Clearly he was already very, very ill, with a disease for which in general there are “no cures, and few effective treatments”. For RRM2B, because it affects the brain too (unlike other versions which only affect the muscles), the idea of treatment is remote. If you saw a report on CNN which said “and here’s someone with mitochondrial disease just like Charlie Gard!” it was possibly TK2, and it isn’t like his. RRM2B is also progressive: unless you can figure out how to make the mitochondria work, the condition will worsen and lead inevitably to death.


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Boogie

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quote:
Originally posted by Golden Key:
Here:

"This man’s son tried the experimental treatment Charlie Gard’s parents want" (CNN Wire, via KFOR).

Arthur Estopinian says Arturo, his son, was helped by the treatment--and he was the one who put the Gards in touch with Dr. Hirano.

Additional perspectives:

"Why Charlie Gard’s case is so disturbing to Americans" (STAT magazine of medical journalism).

"Mito Hope & Help" (Support site on Facebook).

Which adds to my feeling that Charlie would have suffered less if the US doctor and supporters had kept their noses out.

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Golden Key
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Boogie--

How so, please? Granted, the doc was very, very wrong not to follow up on all of Charlie's info. (Has anyone heard why??)

But ISTM that most people who tried to help (as opposed to people (like anti-abortion activists) who were forcing their own agenda) were simply trying to help. The Gards wanted to do everything they possibly could to save their son, or at least give him a chance. I skimmed some of the Mito support group postings. Looks like they supported the Gards, and some definitely thought they should have a chance to decide on their own. One went so far as to call what the powers that be did "murder".

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Curiosity killed ...

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quote:
Originally posted by orfeo:
<snip> my issue is not with the judge's findings about futility, but querying on what basis the hospital could step into this treatment decision.

If we're going to say they could override the parent's wishes because the parents wanted something harmful, we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.

orfeo, having read the April judgement, the phrasing is to stop additional treatment to Charlie, whatever hospital, because his condition had deteriorated so badly. The whole judgement is what is in the best interests of Charlie, and he was represented in court by his team, who have been kept anonymous. The judge is deciding for Charlie as the hospital and family cannot come to a consensus, other than Charlie continuing on ventilation with no chance of recovery was not what anyone wanted. The contention was that the parents wanted the hospital to allow Charlie to trial the nucleoside bypass therapy after the hospital discounted it at a meeting on 13 January, which the parents attended.

GOSH were going to trial the nucleoside therapy in January, after consultation with others. On 9th January it was going ahead, a planned meeting of the Ethics Committee on 13th January to discuss and approve this (para 79 and 82). What changed is that Charlie started having catastrophic epileptic fits in January (probably started in December), from 9th or 10th January "intermittently to 27th January" that could only be seen on brain scan, because he had no muscles to make his body move. There were electrical impulses, no responses. Those fits were indicators that the brain damage had deteriorated and he only had months to live whatever support he had. He had no muscles to support breathing, so the ventilator was forcing air into him, with the corresponding damage to his lungs, other organs were failing, particularly his kidneys.

He was born 4 August 2016 looking normal but within a few weeks was failing to thrive. He had already deteriorated badly enough to be on a ventilator and feeding tube in GOSH intensive care by October, and diagnosed in late October, early November. He was on a feeding tube first to help him put on weight, and later referred to GOSH. It took experimental DNA analysis to diagnose him with later confirmation from more conventional sources in December.

Dr Hirano said:
quote:
“Seeing the documents this morning has been very helpful. I can understand the opinion that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.” (para 98)
His evidence is not consistent in the hearing, or with his public pronouncements. He also said:
quote:
“It is very difficult for me never having seen him, being across the Atlantic and seeing bits of information. I appreciate how unwell he is. His EEG is very severe. I think he is in the terminal stage of his illness. I can appreciate your position. I would just like to offer what we can. It is unlikely to work, but the alternative is that he will pass away.” (para 128)
The procedures that Charlie was undergoing to be kept alive included nasal suction to keep his lungs clear and other invasive treatments, including regular blood tests (heel pricks), which his mother described him as not enjoying. He also had a sore area on his neck where the tape to his face goes.

In his final paragraphs the judge suggests that instead of resorting to court hearings there should be a private mediation provision to hear these cases.

As to legal costs - all the solicitors and barristers for the family and Charlie provided their time pro bono (for free). I suspect GOSH will have legal fees to pay.

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mdijon
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quote:
Originally posted by Golden Key:
...were simply trying to help.

Whatever their motives, the outcome was a 6mth prolongation of futile suffering for Charlie, and emotional turmoil for his parents. Whatever their motives, the information they acted on was incorrect and their actions are profoundly unhelpful.

quote:
Originally posted by Golden Key:
One went so far as to call what the powers that be did "murder".

Trying to help?

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Baptist Trainfan
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quote:
Originally posted by Curiosity killed ...:
The procedures that Charlie was undergoing to be kept alive included nasal suction to keep his lungs clear and other invasive treatments, including regular blood tests (heel pricks), which his mother described him as not enjoying. He also had a sore area on his neck where the tape to his face goes.

All of which (and what came above) begs the question of whether he was "alive" in any meaningful way at all - one which medics must be frequently required to ask.
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mdijon
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quote:
Originally posted by Golden Key:
Additional perspectives:

"Why Charlie Gard’s case is so disturbing to Americans" (STAT magazine of medical journalism).

The hypocrisy of that piece is impressive. Americans must be so sensitized by the millions of uninsured children and bankrupt parents that this one child reaching the edge of medical care has really disturbed them.

One particularly insightless moment was

quote:
In the American system, clinicians can decline to offer a treatment. They can decide, for example, not to resuscitate a patient or not to offer dialysis if they believe it will cause more harm than good...
...or if the patient doesn't have enough money or insurance. Much more ethical.

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orfeo

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quote:
Originally posted by mdijon:
quote:
Originally posted by orfeo:
I'm fine with arguing it was pointless or futile, but describing it as harmful when the alternative is certain death takes some serious mental juggling.

What if it causes pain and suffering in the attempt?
My dentist causes me pain and suffering when she cleans my teeth.

I agree that causing pain and suffering when a treatment is futile is one more reason to not have the treatment. But pain and suffering in and of itself is not a reason to not have treatment.

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orfeo

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Just flagging I am going to come back to CK's post, but it's not feasible on iPhone.

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mdijon
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quote:
Originally posted by orfeo:
I agree that causing pain and suffering when a treatment is futile is one more reason to not have the treatment. But pain and suffering in and of itself is not a reason to not have treatment.

Let me spell it out.

For Charlie;

a) the patient can't consent for himself.
b) the treatment is futile
c) the treatment causes pain and suffering.

When a), b) and c) are all met, the court has business getting involved.

For Orfeo's dental work;

a) the patient can consent for himself
b) the treatment is effective
c) there is a bit of pain, I would suggest considerably less than Charlie's potential suffering during the last 6 months.

Therefore the court has no business getting involved.

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lilBuddha
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quote:
Originally posted by mdijon:

I appreciate he has a prestigious position and has expertise in neurology, but his behaviour in this instance is quackery.

If it walks like a duck...

Phrasing this carefully, one can be a legitimate medical practitioner and dispense highly "questionable" advice.
quote:
Originally posted by mdijon:
The hypocrisy of that piece is impressive. Americans must be so sensitized by the millions of uninsured children and bankrupt parents that this one child reaching the edge of medical care has really disturbed them.

It is staggering that people who are actively attempting to take away health care from children it could actually help are pretending concern for Charlie Gard.
quote:
Originally posted by Golden Key:

"This man’s son tried the experimental treatment Charlie Gard’s parents want" (CNN Wire, via KFOR).

This was a different variation of the condition.

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mdijon
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quote:
Originally posted by mdijon:

I appreciate he has a prestigious position and has expertise in neurology, but his behaviour in this instance is quackery.

If it walks like a duck...

quote:
Originally posted by lilBuddha:
Phrasing this carefully, one can be a legitimate medical practitioner and dispense highly "questionable" advice.

...and quacks like a duck...

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Curiosity killed ...

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There is a whole section on Dr Hirano in the judgement on the Charlie Gard case. Both the quotations I gave above are included in that section, many paragraphs apart.

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Bishops Finger
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Has anything yet been decided as to what is to be done with the money raised by crowdfunding?

BBC News, at least, has gone quiet - hopefully, out of respect for Charlie's family, who will, presumably, be holding his funeral very soon.

IJ

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Curiosity killed ...

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That doesn't mean funeral plans are not all over other news outlets (the Evening Standard for one).

Apparently the money is to provide support for families dealing with similar genetic problems.

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Bishops Finger
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Yes, I don't doubt that the (mainly) right-wing media feeding frenzy will continue until after the poor little chap's funeral. Common decency amongst such people seems to be unknown.

Hopefully the money raised will help those still battling with this condition.

IJ

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Curiosity killed ...

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Before this thread slides off the bottom of the page, I am flagging this:
quote:
Originally posted by orfeo:
Just flagging I am going to come back to CK's post, but it's not feasible on iPhone.

because it hasn't happened yet.

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