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Source: (consider it) Thread: Medical treatment--who gets what, who decides, who pays?
Doublethink.
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I should add that the child's best interest trumps the adult's. This is a difficult position to be in supporting parents with learning disabilities (termed mental retardation in some English speaking countries).

I have sat in child protection meetings with clients who I know will be devastated - and whose lives will be derailed if they lose custody of their child - where I am obliged to give an opinion to the child protection conference. I can recommend what may help to enable them to care for their child appropriately - advocate in that sense. But also, in that situation I must have regard to the primacy of the child's best interests not my client's.

That's the legal and professional obligation - and it can be fucking painful.

[ 26. July 2017, 20:00: Message edited by: Doublethink. ]

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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alienfromzog

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This is a relation of Mrs-Dr-alienfromzog writing:

Katie Garden's Blog

It comes with a mascara warning.

The truth is that with children, we (the medical profession, parents, society) are faced some very tough situations. The bottom line is that much of what we do in medicine is really nasty and invasive. I'm a paediatric surgeon, so I do nasty and invasive things to small children and babies. I have no issue with doing nasty and invasive things to children if it's going to make them better. I have big issues with doing nasty and invasive things to children when it doesn't have a benefit for them. It can be incredibly difficult to know when to stop, and the truth is, particularly in paediatrics, we over-treat. We have to be so sure.

The problem with all the nonsense around Charlie's sad story is that if we are not careful, that will just get worse and we will make more children suffer and parents will have even more anguish. As the blog expresses, the worst thing as a parent was knowing when to let go.

There is nothing to be done or said to make a parent who has lost a child feel better. But we can make them feel a hell of a lot worse by piling on even more guilt.

AFZ

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[Sen. D.P.Moynihan]

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Gee D
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quote:
Originally posted by quetzalcoatl:
Except that sometimes parental rights are circumscribed, if the courts decide that the child's rights are infringed. I suppose this is quite rare, but examples cited include blood transfusions (for JWs), and of course, faith healing, without medical treatment.

Parents can't decide on any treatment at all.

You would be surprised at the numbers of blood transfusions the courts approve on an annual basis - quite a number. It's just that few get much in the way of publicity.

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quetzalcoatl
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quote:
Originally posted by Gee D:
quote:
Originally posted by quetzalcoatl:
Except that sometimes parental rights are circumscribed, if the courts decide that the child's rights are infringed. I suppose this is quite rare, but examples cited include blood transfusions (for JWs), and of course, faith healing, without medical treatment.

Parents can't decide on any treatment at all.

You would be surprised at the numbers of blood transfusions the courts approve on an annual basis - quite a number. It's just that few get much in the way of publicity.
Now I'm confused by that. Do you mean that courts sometimes approve the right of JWs not to give their children transfusions?

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quetzalcoatl
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No, I think you are agreeing with me, which is confusing, as you say I would be surprised, when I had pointed out that courts do stop JWs from preventing their children having transfusions.

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I can't talk to you today; I talked to two people yesterday.

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Gee D
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Yes, I was agreeing with you and when suggesting that the numbers of transfusions ordered would surprise you meant that they are much higher than you'd probably expect. In my state, with a population of around 7.5 m, there would be an average of 2 a week or so. Very few are reported, the legal principles are pretty clear and the objections follow an almost standard form.

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Not every Anglican in Sydney is Sydney Anglican

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quetzalcoatl
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GOSH have now said that it's not in Charlie's best interests to spend a long time in a hospice. Parents said they wanted a week with him, I think. I expect that the court will go with GOSH.

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Boogie

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quote:
Originally posted by quetzalcoatl:
GOSH have now said that it's not in Charlie's best interests to spend a long time in a hospice. Parents said they wanted a week with him, I think. I expect that the court will go with GOSH.

Goodness knows how that will play out in reality [Tear]

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Garden. Room. Walk

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mdijon
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quote:
Originally posted by Gee D:
Very few are reported, the legal principles are pretty clear and the objections follow an almost standard form.

In my experience JWs are often not too unhappy with the court order. The reason being that none of them want their children to die, but they don't want to be disfellowshiped either. But having been forced to have a transfusion is OK.

I have been advised to use the following form of words being used with an adult JW patient;

"I understand you don't want a transfusion now and won't give consent. If you were to become unconscious and unable to communicate, I would have to make a decision about whether to give you a transfusion in that newly developing situation. If you don't want to receive a transfusion in those life-threatening situations you need to put an advance directive in place. You should say something now if you want to start doing that.

You don't have to say anything, and if you don't say anything then I will now leave the room and act accordingly. Whatever happens you can rest assured of complete confidentiality including with your next of kin and no-one else would ever find out, unless you tell me now that you would want me to discuss it with them."

On the occasion I used it the patient said nothing and I left the room and wrote in the notes that they should have a transfusion in a life threatening situation where they weren't actively resisting or expressing disapproval. And from then on they were much more relaxed about their treatment plan.

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L'organist
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IMO The whole thing boils down to Ms Yates and Mr Gard being brought to an acceptance that their child has no future. A terrible thing to have to face at any time, but I imagine much worse for them now since they have become synonymous in the public mind with life-at-all-costs.

I suspect that the latest refusal to come to an agreement over how long to keep child on a ventilator stems from the fact that he was born on 4th August last year and so Friday next week would be his first birthday. And maybe in those few moments between waking and full consciousness his parents still think of a joyous first birthday party for their little boy.

The fact is that their son is not really alive now, he is just being invasively ventilated - he isn't taking additional oxygen in, it is being forced into his lungs - and with the best will in the world there are limits on the numbers of specialist paediatric ITU nurses and doctors available to be on-call for any time to supervise this. Added to which, hospices really aren't there to provide open-ended space for people of any age who are only being kept alive by machine: hospices are all about achieving a "good death" and the notion of invasive ventilation is the very antithesis of everything the hospice movement has fought for.

I suspect these parents will never come to terms with their son's death and that to move him to a hospice without some agreement on how long for would only expose the hospice to the same sort of legal wrangling endured by GOSH: in fact it may be that part of the difficulty in finding Charlie Gard a hospice bed is not just that hospices don't have ITU specialists on staff (on the whole) but also that they want a guarantee they won't be dragged through the courts.

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Rara temporum felicitate ubi sentire quae velis et quae sentias dicere licet

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Rocinante
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I suspect it will prove impossible to find any hospital, hospice or any other institution that wants this toxic media feeding frenzy on their doorstep. They all have the wellbeing of other patients to consider, not to mention their reputations and exposure to lawsuits.

Therefore, given the parents' refusal to accept that their son is no longer alive in any meaningful sense and allow removal of ventilation, they may well get their wish of him "dying" at home. Or, possibly more likely, in the ambulance on the way there.

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quetzalcoatl
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Just scanning some social media, and sympathy for the parents is draining away. It just seems to be going on too long, and seems to be for their benefit, not Charlie's. I suspect the judge is about to call a halt.

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Bishops Finger
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He has, it would seem.

http://www.bbc.co.uk/news/uk-england-40745988

[Votive]

IJ

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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)

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Marama
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I have hesitated to write anything on this thread, but feel now is the time. Over thirty years ago we had a son who was born with a severe heart abnormality, and who died aged 3 days. So I do have some idea what Charlie Gard’s parents are going through, and feel obvious sympathy for them. We were in a developing country at the time(not that it would have made any difference to the outcome where we’d been) with a greater acceptance than in metropolitan countries of death as part of life. This ultimately proved comforting. In contrast to our experience, Charlie Gard’s parents have been exploited and misled by a combination of a mercenary American doctor, nutty right-to-lifers and various people with political axes about healthcare to grind – and understandably have been ready to cling to any hope no matter how far-fetched. Now they seem to have become oblivious of the needs of anyone except themselves, which is perhaps understandable, but hugely damaging to other patients and parents at GOSH, not to mention all the staff there. Other tragic situations must be happening there too, and the media circus can only make things harder for other worried and grieving parents. Charlie’s parents seem to be unaware of this, though they must see it every day.

What Charlie’s parents seem to have lacked is a mature voice close to them prepared to give them wise but firm counsel , to help prepare them for the inevitable – and to point out that they are not the only people in the world. No grandparents or other relatives, or older friends around that I have heard of. In our experience the support and love of such people was crucial. Soon they are going to have to face Charlie’s death and the future, which will be a long and hard road – we know. I’m pretty certain that the way they are behaving now, especially the courting of publicity, is going to make the road harder. That is the thing I really do not understand – the desire to have a private tragedy played out in the press, with hurtful things said on all sides, to be discussed on social media, the papers and TV. I can’t imagine anything worse in the circumstances, adding to all the distress.

A few years after our son’s death came the Baby Fae case, where a baby with a severe heart abnormality (not quite the same as in our case I think) was transplanted with a baboon heart, and lived a very short time. I remember thinking at the time: Thank God we were spared that sort of decision, that offer of experimentation, that sort of publicity (though identities were kept private), that false hope. Sometimes there is no alternative to acceptance.

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Boogie

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Bless you Marama [Votive] [Tear]

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mdijon
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These things are really tough. I agree the Gards give the impression of being quite other-worldly in their understanding and having no sane guidance. The problem is they stopped trusting the hospital, so while distrusting the advice they are getting they don't have any basis for deciding who or what to believe, and have fallen into the hands of cranks.

Getting to the point of shouting out "Evil" in the courtroom, arguing with the judge about a direct quotation, or saying that you can't be in the same room as the judge isn't good for anyone, especially for the Gards. I understand that they are devastated, but there are some expectations of respect for others even when one is devastated.

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Bishops Finger
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Latest news in the Gard case is that Charlie has died, in the hospice to which he was taken yesterday:

http://www.bbc.co.uk/news/uk-england-london-40752120

[Votive]

IJ

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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)

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orfeo

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quote:
Originally posted by Leorning Cniht:
quote:
Originally posted by orfeo:
No, this my problem. It is wrong to equate duty of care with having responsibility for the child. The parents have responsibility for the child.

Yes. But as Doublethink mentioned, if you think that the parents (or whoever else has responsibility for the child) are not discharging that responsibility appropriately, you may apply to the courts for an emergency protection order.
I'm sorry, but why do people keep bringing this up? Not only is it not in dispute from me, but it is utterly irrelevant to the case at hand.

It feels like it's been about half a dozen times that people who think the hospital was in the right have brought up the spectre of rescuing a child from bad parents neglecting their child. Which in no way resemble the actual basis of the hospital's application to the court.

You're all reaching for a justification of "why can the hospital intervene" and going for an obvious scenario that I never disputed. I never said no hospital anywhere, ever has a right to get a court order. I didn't even say THIS hospital had no right to a court order. I made a very specific complaint about a very specific kind of order, and only a few of you seem capable of actually grappling with what I said.

[ 30. July 2017, 14:01: Message edited by: orfeo ]

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quetzalcoatl
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One of the better articles on the case:

https://reaction.life/charlie-gard-facts/

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mdijon
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quote:
Originally posted by orfeo:
why do people keep bringing this up?

I think the reason for this disconnect is that you think nucleoside therapy does no harm. Others disagree and think that it does harm. Now there's a point to debate here, but worth defining if that really is the point of disagreement.

If nucleoside therapy is a bag of fluids that gets injected, might or might not help, and if it doesn't that's that then I agree with your view that the parent's desire to try it out should take precedence.

If on the other hand it is a therapy without even basic toxicology data on mice that could cause any kind of reaction in the child, and includes a transportation and prolongation of life support that may well be harming the child, then I think it is reasonable for the courts to get involved.

(Personally in GOSH's position I think the chances that nucleoside therapy would have been worse than 6months additional intensive care stay are very slight, and perhaps with hindsight it would have been better to let it go at the start).

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Eirenist
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But the American specialist had not made any proper assessment of the patient's condition until last week, despite being invited to do so in January. How could the GOSH team as responsible professionals allow him to take charge of the case, even supposing it was practicable to move Charlie to the USA?

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mdijon
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Sure, he's a quack. However he has a license in the US, and while he's a quack I'm not sure there's any reason to think he would have been struck off for similar idiocy in the UK. So while the move would have meant additional suffering for Charlie as compared with an immediate switch to palliative care, on the other hand compared with the train wreck that actually ensued it would have been less traumatic. But this is with hindsight, I'm not sure how clearly one could have foreseen the 6 month court battle in prospect.

(I am a bit surprised that the FDA would allow this therapy to be given actually - presumably it would have been done under a one-off compassionate use application.)

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

He may be wrong, but if by "quack" you mean this:
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.
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orfeo

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quote:
Originally posted by mdijon:
quote:
Originally posted by orfeo:
why do people keep bringing this up?

I think the reason for this disconnect is that you think nucleoside therapy does no harm. Others disagree and think that it does harm. Now there's a point to debate here, but worth defining if that really is the point of disagreement.

If nucleoside therapy is a bag of fluids that gets injected, might or might not help, and if it doesn't that's that then I agree with your view that the parent's desire to try it out should take precedence.

If on the other hand it is a therapy without even basic toxicology data on mice that could cause any kind of reaction in the child, and includes a transportation and prolongation of life support that may well be harming the child, then I think it is reasonable for the courts to get involved.

(Personally in GOSH's position I think the chances that nucleoside therapy would have been worse than 6months additional intensive care stay are very slight, and perhaps with hindsight it would have been better to let it go at the start).

I just think that talking about things like emergency protection orders is quite bizarre when it is the hospital that wanted to turn off ventilation and move to palliative care.

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.

[ 30. July 2017, 23:00: Message edited by: orfeo ]

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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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Rara temporum felicitate ubi sentire quae velis et quae sentias dicere licet

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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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# 1468

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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")
--"Oh, Peace Train, save this country!" (Yusuf/Cat Stevens, "Peace Train")

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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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Garden. Room. Walk

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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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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?" (Dragon, "Jane & the Dragon")
--"Oh, Peace Train, save this country!" (Yusuf/Cat Stevens, "Peace Train")

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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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# 15128

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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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# 14333

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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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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)

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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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