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Source: (consider it) Thread: Medical treatment--who gets what, who decides, who pays?
Baptist Trainfan
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I was shocked that the family shouted out that the medics were "lying" when they were in court yesterday. It's one thing to say, "I disagree with your analysis of the situation" - although I do not see how lay people can do so in a meaningful way. It's quite another to start bandying about suggestions of conspiracy and untruth. The GOSH folk must have felt very hurt.
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Jane R
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Baptist Trainfan:
quote:
But there could be a cost to other children who may not be able to get the treatment they need, driven by the finity of financial and other resources such as personnel.
Yes, I thought of that. I'm sure the hospital have thought of it too, but there's not a lot they can do about it while they are still hoping for a reconciliation with the Gards.

Doesn't look hopeful at the moment. They really are starting to sound like people who want the right to choose their own gravitational constant, aren't they (the Gards, that is, not the hospital staff).

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quetzalcoatl
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Yes, one of the unfortunate consequences of the media circus is that it takes on a life of its own, and parents can start to seem like stars of it. Then the child himself is getting forgotten.

I was watching an American pastor praying in front of the court yesterday, wow, self-aggrandizement in spades. I think he said that the new court session was a response by God. Theology schmeology.

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Baptist Trainfan
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I went to the website of a newspaper well-known for is cautious and considered views and was surprised to discover this as its headline article.
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Jane R
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Oh, you shouldn't be. Controversy dying down? Poke it with a stick and generate your next fortnight's worth of banner headlines.

The Daily Heil has only two aims: first, to make money; second, to keep the Tories in power (and make money). The fact that in the process, half the country ends up at the other half's throats is just a happy accident.

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quetzalcoatl
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Another aim: to attack the NHS.

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no path

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Doublethink.
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Charlie's parents are desperate and extremely distressed, I imagine everyone working with their son realizes that. It may be hurtful to be called a liar, but I imagine staff will understand why that happened.

One of the reasons the courts are mandated to decide these issues when dispute arises, is because the power of the emotions involved can distort people's reasoning.

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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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Jane R
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quetzalcoatl, re the Daily Heil:
quote:
Another aim: to attack the NHS.
I think that is subsumed under my second point. Nobody would vote for a party that is proud of its record in cutting public services if they weren't already persuaded that cutting public services is necessary.
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Eirenist
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A large sum of money has been raised in the hope of paying for Charlie's treatment in the US or elsewhere. What will happen to it if the court decides that would not be in his interests?

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lilBuddha
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quote:
Originally posted by Jane R:
quetzalcoatl, re the Daily Heil:
quote:
Another aim: to attack the NHS.
I think that is subsumed under my second point. Nobody would vote for a party that is proud of its record in cutting public services if they weren't already persuaded that cutting public services is necessary.
It isn't that simple. Forgetting the rich Tory voters, many of the rest do want public service cut, except not the ones that benefit them. They believe the rubbish that Tory pols serve up that they are not the target. And there are voters who are myopically focused on one or two issues that they whole-heartedly agree with the pols on,like immigration.
And those that conflate the two:If we can only get rid of the immigrants, we wont need to cut services to "real" Brits.

[ 11. July 2017, 15:39: Message edited by: lilBuddha ]

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la vie en rouge
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quote:
Originally posted by Eirenist:
A large sum of money has been raised in the hope of paying for Charlie's treatment in the US or elsewhere. What will happen to it if the court decides that would not be in his interests?

It will be given to charity/medical research.

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quetzalcoatl
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I noticed an editorial in Fox News, arguing that this case shows how oppressive 'big government' and socialized medicine are over the rights of the individual.

Actually, this is wrong on 4 counts. First, the government is not demanding that Charlie be treated or not. Second, the role of the judiciary is independent. Third, it is Charlie's human rights here which are being defended, which are not subsumed under those of his parents. Four, the medical opinions are not really dependent on medicine being socialized, are they?

http://www.foxnews.com/opinion/2017/07/10/charlie-gard-why-his-struggle-may-soon-be-ours.html

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no path

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Jane R
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lilbuddha:
quote:
Forgetting the rich Tory voters, many of the rest do want public service cut, except not the ones that benefit them. They believe the rubbish that Tory pols serve up that they are not the target. And there are voters who are myopically focused on one or two issues that they whole-heartedly agree with the pols on,like immigration.
Yes, you're right. I stand (or, to be precise, sit) corrected.

quetzalcoatl:
quote:
Four, the medical opinions are not really dependent on medicine being socialized, are they?
Oh, I think you'll find they are. Or why does American healthcare cost so much and yet still fail to cover the whole population? [Frown]
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Leorning Cniht
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quote:
Originally posted by Baptist Trainfan:
I went to the website of a newspaper well-known for is cautious and considered views and was surprised to discover this as its headline article.

I'm not surprised - because it's sensational bollocks. It's not wrong to question doctors. If the doctors tell you there's no hope for your baby, and you don't understand why, it is completely reasonable and correct to ask them to explain themselves, and to seek another opinion if you're not satisfied.

But what the Gards are doing isn't "questioning doctors". They are, I am afraid, letting their hope run away with their reason. They are "questioning doctors" in the same sense that the flat earth nutters are "questioning science". It's not a question, because there's no openness to an answer. In the case of the flat earth nutters, there is nothing you can say to them, and no experiment that you can perform, that will convince them that the earth is round.

It seems like the Gards have walked themselves into the same state of mind - they think there's a small but non-zero chance for Charlie to recover (for some value of recover), and no evidence is going to persuade them otherwise.

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stonespring
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quote:
Originally posted by mdijon:
quote:
Originally posted by stonespring:
I'm not sure what "dying with dignity" means for a baby.

What it doesn't mean is the increasing difficulty to maintain intravenous access, meaning that an intern will be stabbing fragile bruised veins all over the baby every time the drip falls out. The tube down into the baby's lungs will need suctioning regularly, the skin will be in increasingly poor condition and at risk of breaking down and ulcerating. The lung might collapse under the pressures required for ventilation and then a chest drain will be needed.

There are barbaric aspects to a stay in intensive care, and at the point where no-one involved in the care believes in any patient benefit the sacrifice begins to feel quite appalling.

Thanks for the clarification. Being in the ICU, at least at the hospitals I have been to here in the US, all to visit adult patients, can mean (in terms of patient quality of life) anything from just being monitored more closely to having all kinds of needles, tubes, respirators, stents, etc., keeping you alive.

quote:

So withdrawing intensive care is not really the same as not starting it, but likewise I cannot see it as identical to euthanasia, and neither do the courts.

I wasn't claiming that removing life support is identical to euthanasia, but when you have removed enough life support that a person's death is not only hastened but becomes imminent, I don't think there is any way to claim that you are not causing that person's death. I am not claiming that removing an infant's life support against the parents' wishes is murder, and I am not necessarily saying that it is immoral. I would distinguish it from euthanasia by saying that, for me at least, euthanasia is undertaking actions to kill a gravely ill person that have nothing to do with ending treatment or removing life support and are clearly actions done with the intent to kill that person. However, although I do not believe removing enough life support that a slowly dying person's death becomes imminent is euthanasia, I do still believe it is not just allowing someone to die, but causing someone to die. I think that that moral distinction is important as the pace of technological change makes bioethical decisions more and more complex - even if removing life support is the moral thing to do.
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Patdys
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Lets start with defining terms.


Euthanasia - Adapted from International Task Force on Euthanasia
quote:
Euthanasia is the act of intentionally, knowingly and directly causing the death of a patient, at the request of the patient, with the intention of relieving intractable suffering. If someone other than the person who dies performs the last act, euthanasia has occurred.
Physician Assisted Suicide - Adapted from International Task Force on Euthanasia
quote:
Assisted suicide is the act of intentionally, knowingly and directly providing the means of death to another person, at the request of the patient, with the intention of relieving intractable suffering, in order that that person can use that means to commit suicide. If the person who dies performs the last act, assisted suicide has occurred.
What it is not. - Adapted from a position statement on Euthanasia and Physician Assisted Suicide
quote:
Patients have the right to refuse life sustaining treatments including the provision of medically assisted nutrition and/or hydration. Refusing such treatment does not constitute euthanasia.

Treatment that is appropriately titrated to relieve symptoms and has a secondary and unintended consequence of hastening death, is not euthanasia.

Palliative sedation for the management of refractory symptoms is not euthanasia.

Patients have the right to refuse treatment. In my setting, they do not have the right to demand treatment.
And we know life support is merely a tool to assist the functioning of a patients vital systems such as cardiac, respiratory etc.
And removing life support is not euthanasia. It not an act of killing.
It is simply removing a tool. It is then a question of whether the patient has sufficient health and reserve to maintain their own circulation etc.
And we know, as we walk alongside the family, that due to disease, some patients will not be able to maintain their function and will die. But it is not removing the tool that caused death but the underlying disease. It sucks. And it part of the cost of mortality. Of being human.


Originally posted by stonespring:
quote:

I wasn't claiming that removing life support is identical to euthanasia, but when you have removed enough life support that a person's death is not only hastened but becomes imminent, I don't think there is any way to claim that you are not causing that person's death.

The underlying medical condition causes the death. This is actually really important.
Life support is not a disease cure. It is not an end point. It is a tool. And withdrawing it does not cause death. The patient having a condition resulting in them being unable to maintain vital functions is what kills them.

quote:
I am not claiming that removing an infant's life support against the parents' wishes is murder, and I am not necessarily saying that it is immoral. I would distinguish it from euthanasia by saying that, for me at least, euthanasia is undertaking actions to kill a gravely ill person that have nothing to do with ending treatment or removing life support and are clearly actions done with the intent to kill that person.

See the definition above. And it is not immoral. It is an incredibly sad situation and there is no good choice. But having to choose one lousy choice from a number of bad choices is not immoral.
However using the suffering of a patient, family and health professionals involved to point score by the world media/politicians etc is immoral. I struggle even with our discussion here. These are real grieving people. Not some ethics exercise.

quote:
However, although I do not believe removing enough life support that a slowly dying person's death becomes imminent is euthanasia, I do still believe it is not just allowing someone to die, but causing someone to die.

I am afraid your opinion here is wrong. And to those who work in the field, potentially offensive.

quote:
I think that that moral distinction is important as the pace of technological change makes bioethical decisions more and more complex - even if removing life support is the moral thing to do.

These situations are heart breaking. Being medically and legally right takes nothing from the desire to work with the suffering of the family.
We all die. There is no say in that.
The only say we do have is how well.

[ 11. July 2017, 22:42: Message edited by: Patdys ]

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mdijon
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quote:
Originally posted by stonespring:
I think that that moral distinction is important as the pace of technological change makes bioethical decisions more and more complex - even if removing life support is the moral thing to do.

I'm not comfortable with the phrasing "causing someone to die" and I'm not sure the distinction is useful but I do agree there's a difference in terms of immediacy of the action, and discontinuation versus continuation feels very different.

When doctors set a ceiling on care, and agree to continue providing ITU care but say that they won't initiate a new antibiotic course for the next infection, or won't start parenteral nutrition, for instance, that feels very different from stopping the ventilator. The former feel less immediate as a cause of death, and involve not starting something.

But if discontinuing or inaction can be said to "cause death" then both could be labelled that way.

If a GP decides that a patient shouldn't be admitted to hospital but, like Pope JP II, should be allowed to die at home then does that "cause their death" as well?

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Ricardus
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quote:
Originally posted by quetzalcoatl:
I noticed an editorial in Fox News, arguing that this case shows how oppressive 'big government' and socialized medicine are over the rights of the individual.

Actually, this is wrong on 4 counts. First, the government is not demanding that Charlie be treated or not. Second, the role of the judiciary is independent. Third, it is Charlie's human rights here which are being defended, which are not subsumed under those of his parents. Four, the medical opinions are not really dependent on medicine being socialized, are they?

http://www.foxnews.com/opinion/2017/07/10/charlie-gard-why-his-struggle-may-soon-be-ours.html

Wow, you really do have to be a lying sack of shit to work at Fox, don't you!

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Then the dog ran before, and coming as if he had brought the news, shewed his joy by his fawning and wagging his tail. -- Tobit 11:9 (Douai-Rheims)

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mdijon
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I doubt it is an essential requirement scored out of 10 on their recruiting panelists template, but probably does come into the desirable section.

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Patdys
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I no longer feel everyone is entitled to express their opinion.
I now tend towards everyone is entitled to ask as many questions as they wish to gain an accurate understanding and then express their informed considered opinion whilst accepting they must listen to others as well.

I am not sure I could work for fox.

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Golden Key
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Various questions and comments, from an American non-parent (so they may be worth less than you're paying for them):

--There were some posts that sounded like if Charlie's allowed to get treatment in the US, it will somehow deprive other kids. If the NHS were to pay for it, that might make some sense. But crowd-funding would pay for it. The only other reason I could think of is if Charlie's treatment would be deemed somehow to interfere with future clinical trials. (Apologies if that was explained already. There seemed to be pointers in that direction on this thread, but a lot of this is over my head.)


--Annoying question from a layperson: There was mention that repeatedly sticking Charlie with needles and such would be extremely painful--and, in itself, a reason to take him off life support. But...AIUI, there's a "lock" or "port" gadget, that can be put into a person's arm, that can keep a hole open, so more holes don't have to be made. Would anything like that be possible/appropriate? (Maybe it's already being used. I haven't been able to bring myself to dig into the details of Charlie's treatment.)


--la vie en rouge pointed out that Americans and Europeans have very different attitudes about who decides what's best for a child. She's right, IMHO, though I didn't realize the European side until this case.

Matt Black said:

quote:
It's not so much 'state rights - v- parents' rights' as 'children's rights -v - parents' rights'.
Whereas in the US, parents are almost always in charge of decisions about their kids (medical care, what's taught at school, etc.)--*unless* they're deemed to be unfit. E.g., parents who won't let their kids get medical treatment. That's often a religious matter, which drags in "religion vs. gov't" tangle we have here in the US. And it can get nasty.

I think, over the years, I've heard many more court news stories about parents refusing treatment for their kids, than parents trying to force hospitals to treat their kids--though both happen.

IIRC, there was a case here, some years back, where a girl was deemed in some variant of chronic vegetative state, and the hospital wanted to take her off life support. The family fought to take her to another facility, and won. IIRC, she lived for a while after the transfer. Not sure what happened beyond that.

Similar, of course, was the Terri Schiavo case--a woman in chronic vegetative state, could move a bit in bed and react to things; but IIRC both the doctors and her husband believed she was essentially gone. Her mom accused him of trying to kill her (via disconnecting life support), so that he could get on with his life. But he'd become some sort of nurse, in order to be able
to take care of her. Big fuss in media and courts. Terri was finally taken off life support. and died. (Complicating that: I don't understand
how Terri could be vegetative and still do what she did. And there was a fairly recent news story
that maybe people like her aren't as gone as was
previously thought. Horrible decisions to have to make.)


--Plus trusting the gov't is pretty much fundamentally unAmerican. That's why we have all the checks and balances. (Which aren't working well in the current US mess.) And it isn't just alt-Right parents who get upset if the gov't (at any level) affects their kids in a way they deem bad.


--I have no idea what the Gards should do. They desperately want to give their boy his best possible chance. And they're not ready to let go of him. And Mrs. Gard says he's still fighting. Those things are probably entangled, which makes it even harder to decide what to do.

If the current care is truly torturing Charlie, then I can see that argument for letting him go. Or if the parents decide everyone's had enough, and it's time to let Charlie go in peace.

But I, an American non-parent, have a really hard time understanding the idea that the Gards are automatically doing something wrong by trying to take him to the US for an experimental treatment. They *could* be, but they also might be heroes.

FWIW, YMMV.

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Baptist Trainfan
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quote:
Originally posted by Golden Key:
There were some posts that sounded like if Charlie's allowed to get treatment in the US, it will somehow deprive other kids.

No, the thought was that, by continuing to receive NHS treatment at GOSH, he might be depriving other kids of treatment, as resources are finite.

quote:
la vie en rouge pointed out that Americans and Europeans have very different attitudes about who decides what's best for a child. She's right, IMHO, though I didn't realize the European side until this case
I think this is very helpful and takes us back to the "two nations separated by a common language" idea - US folk think differently to Brits.

quote:
Mrs. Gard says he's still fighting.

I know she does. And I find the language problematic. To me, just watching him on the TV news, he simply appears to be lying passively. I'm afraid that she - quite understandably - may be guilty of wishful thinking.
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mdijon
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quote:
Originally posted by Golden Key:
--Annoying question from a layperson: There was mention that repeatedly sticking Charlie with needles and such would be extremely painful--and, in itself, a reason to take him off life support. But...AIUI, there's a "lock" or "port" gadget, that can be put into a person's arm, that can keep a hole open, so more holes don't have to be made.

Yes, there is a more long-term line that can be used. They are harder to put into babies than older children or adults, and they still don't last forever and may need removing if there's a risk of infection, and don't allow all the necessary blood tests. Putting them in and taking them out is a minor procedure, and also gets difficult in a child with a long stay. It's only one part of the intensive care process, but perhaps one of the most graphic to mention to change the picture of a serene environment of suspended animation.

There are no easy fixes.

Moving Charlie would be a big deal. Getting him ready on a ventilator could be anything from a bit tricky with lots of logistics to impossible depending on what lung problems exist. (I would guess not impossible since it hasn't been mentioned as a barrier).

But from the hospital's point of view the objection isn't the trouble or expense, it is the futility and cruelty of treatment.

If you are a consenting adult in hospital and you decide you want to leave the hospital and have whatever treatment you want under your own steam that is morally and legally easy for the hospital to agree to.

If you lack capacity to consent then the hospital can't regard you as the property of your carer, and so have due diligence on whether to allow it. And if you can't leave under your own steam then the hospital has to be complicit in helping you to get a treatment that its staff do not agree is in your best interests. This then gets legally and ethically complicated.

I can see that reasonable people would take different views, but surely all reasonable people should be able to see that this is complicated?

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la vie en rouge
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I think the reason most of us are arguing that treatment shouldn’t be continued is that the parents seem to be in a very severe state of denial about his chances. Independent experts were consulted by the courts, who said that the chances of the American treatment being successful were only about 10%, for a very limited definition of “successful”.

Charlie’s mother claims to know he’s not in pain, but this isn’t what medical experts are saying. She’s trusting in her own feelings, and her feelings are not in a reliable place.

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Baptist Trainfan
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Yes - which is why disinterested parties are the best people to make these difficult decisions.

Unfortunately we now seem to have entered a world now which says, "You can't trust experts, they don't know anything".

[ 12. July 2017, 08:06: Message edited by: Baptist Trainfan ]

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Jane R
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Patdys:
quote:
However using the suffering of a patient, family and health professionals involved to point score by the world media/politicians etc is immoral. I struggle even with our discussion here. These are real grieving people. Not some ethics exercise.
Yes, you're right. But it is an important question, and most people find it easier to consider ethics in the context of a real situation.

Getting the media involved in situations like this never ends well. They don't do nuance.

Goldenkey, I don't know how the US system works (except from what I've learned on the Ship) but in the UK, hospitals have a limited number of places in intensive care and high-dependency units. Neonatal intensive care is even more specialised, and the pool of staff qualified to give it is also limited. What we mean when we say 'there is no slack in the system' is that the number of beds provided is intended to be (just) enough for the number of patients expected - with the assumption that most patients will be moved on to normal wards or discharged within a few days, leaving the intensive-care place available for someone else. Patients who require long-term intensive or high-dependency care upset all these calculations (though I don't like referring to them as bed-blockers either).

The doctors at GOSH don't want to take Charlie off life support because they have other patients waiting, though. They want to take him off life support because in their professional opinion there is no effective cure for his condition and - if he's aware of anything - he is suffering.

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Patdys
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quote:
Originally posted by Baptist Trainfan:
Yes - which is why disinterested parties are the best people to make these difficult decisions.

It is interesting that medicos aren't disinterested.
Studies show that the two factors that make you better at prognosis is
1) experience.
2) not knowing the patient.

If we have a therapeutic relationship with a patient, then we are usually too hopeful and optimistic. Oncologists are a good example.
The best person for a prognosis guess (And it is a guess) is an old bastard* palliative care doctor who doesn't know you. Partly cos they will guess a bit better most of the time and partly cos they'll be nice when they tell you.

*unisex bastard- can be male or female and to be honest higher proportion of female palliative care docs in my world.

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Martin60
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The pond difference here is remarkably and fascinatingly 100% consistently stark.

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Golden Key
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BT--

quote:
Originally posted by Baptist Trainfan:
Yes - which is why disinterested parties are the best people to make these difficult decisions.

Errrr...no. Disinterested parties *might* be good at sifting through options. But they shouldn't make the decisions.

quote:
Unfortunately we now seem to have entered a world now which says, "You can't trust experts, they don't know anything".
Well, the attitude is around, but not without reason. Experts *do* frequently make mistakes, great and small. American doctors have traditionally been trained to be gods, to think of themselves that way, and to never admit that they don't know something. (For examples, check out the book "Kitchen Table Wisdom", by Dr. Rachel Naomi Remen. She includes accounts of her own training and practice, and how she's trained others, in addition to stories about her patients.) AIUI, that's gradually gotten better.

But there are still lots of doctors walking and talking the doctor-god method. I've run into them, especially at (anonymous) university teaching hospitals that have excellent reputations. Many of the docs are way too full of themselves, and think they can't make mistakes or prescribe something that a patient can't handle. Lots and lots of flaws behind the scenes, that the place won't admit. Many people have the same experiences. And lots of American doctors .just. .won't. .listen. to patients.

Experts in any field can be wonderful and wise and helpful. But I never completely trust them (or anybody), because, like me, they're human, and don't know everything, and can really mess up. Sometimes, even a small mistake can have large consequences.

No one else decides for me, nor should they. Ultimately, I make my own decisions.

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chris stiles
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quote:
Originally posted by Golden Key:

No one else decides for me, nor should they. Ultimately, I make my own decisions.

But that's not entirely true is it - even in the US there are cases where the courts would get involved when it comes to the welfare of a child.
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Gee D
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quote:
Originally posted by chris stiles:
quote:
Originally posted by Golden Key:

No one else decides for me, nor should they. Ultimately, I make my own decisions.

But that's not entirely true is it - even in the US there are cases where the courts would get involved when it comes to the welfare of a child.
Not just a child - what happens if you lose capacity? I am not speaking of other states, but in NSW a specialist tribunal has power to appoint a guardian of the person to make all such decisions for an incapable person. Or if necessary, the state Supreme Courts would have jurisdiction also (after you'd gone through some hoops).

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Golden Key
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Actually, I was speaking of myself, at the end there. But yes, courts can intervene on a child's behalf about medical care--but that gets very complicated. Mostly, as I mentioned earlier, when a parent refuses medical care for their child.

And yes, the court can appoint a guardian for an incapacitated adult. But there's also an "Advanced Medical Directive" that can be filled out ahead of time, establishing who you want to do what when.

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--"Oh bat bladders, do you have to bring common sense into this?"--Dragon, "Jane & the Dragon"
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Doublethink.
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In the UK an advance directive can specify treatment you do not want, but it can not specify that medics must make available a treatment that you do want. This is on the basis that you can not accurately predict what treatment may be available and appropriate ahead of time.

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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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quetzalcoatl
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quote:
Originally posted by Martin60:
The pond difference here is remarkably and fascinatingly 100% consistently stark.

Is that correct? I mean in terms of parental rights and children's. I don't think that in the US parents can just do anything with their kids, can they? I was thinking of parents who refuse medical treatment, and favour faith healing for their kids. I think it varies from state to state, and probably there is a faith-healing exemption from manslaughter in some states, but not all.

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no path

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Mere Nick
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It seems I heard a few days ago that there is an offer to take the medical treatment "stuff" to the UK hospital where Charlie is. I haven't found any updates to that bit.

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Leorning Cniht
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quote:
Originally posted by Golden Key:

IIRC, there was a case here, some years back, where a girl was deemed in some variant of chronic vegetative state, and the hospital wanted to take her off life support. The family fought to take her to another facility, and won. IIRC, she lived for a while after the transfer. Not sure what happened beyond that.

Are you talking about Jahi McMath? She had surgery in 2013 (something a bit more than a routine tonsillectomy), suffered massive blood loss and cardiac arrest some time after the surgery, and died. Her body was being kept alive by artificial means, but by all reputable accounts, her brain was dead. It had no activity.

She was released to her mother, who kept her body alive with those same artificial means, and had he transferred to another facility where she was given a tracheostomy and a feeding tube.

Her family reports that her condition has improved, and claims that there is evidence of partial brain function. I don't think this has been tested by an independent group of doctors.

The family clearly want their daughter to be alive, and to recover. There is also significant money at stake: Jahi was declared dead in 2013, and her family have a medical malpractice lawsuit against the hospital. If she's dead, they pay out a modest sum; if she's alive, the hospital would be on the hook for the costs of her ongoing care.

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Doublethink.
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Conversely, the BBC¹ are carrying the story of a mother who wants her child to be 'allowed to die' and the doctors do not believe it's in her best interests to withdraw her feeding system. I do wonder if the international commentators in the media would support her parental rights as strongly as they do in Charlie Gaard's case. Is it really the right to make the decision they are concerned about, or is it that the decision should be the one they want ?

---

¹ BBC

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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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Eirenist
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There is the dreadful prospect that if the High Court decision goes against the parents' wishes again, they will go back to the Court of Appeal, then the Supreme Court, then to the ECHR, then someone will persuade them there is fresh evidence . . . . . until eventually the media circus finds somewhere else to go.

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Golden Key
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LC--

Yes, it was Jahi. Thanks! [Smile]

I just found a 2017 update on Doc Bastard's blog. (There are lots of other sources, but his is fairly easy to understand. He does definitely have a point of view, but he also seems to have done a good job of providing background info.)

Jahi's still alive, per her mother, and dead, per most medical folks.

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--"Oh bat bladders, do you have to bring common sense into this?"--Dragon, "Jane & the Dragon"
--"I'm not giving up--and neither should you." --SNL

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mdijon
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quote:
Originally posted by Golden Key:
Actually, I was speaking of myself, at the end there.

And of course the situation is exactly the same in the UK. No-one, however expert, can override a competent adults right to consent or refuse treatment.

On the other hand an adult doesn't have the right to demand treatment that the doctor doesn't want them to have. That is also true in the US where in addition the insurance plan, or lack of it, can abrogate a patient's right to treatment as well.

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mdijon nojidm uoɿıqɯ ɯqıɿou
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Golden Key
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DT--

quote:
Originally posted by Doublethink.:
Is it really the right to make the decision they are concerned about, or is it that the decision should be the one they want?

Possibly both, if they think they know what's right.

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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"
--"I'm not giving up--and neither should you." --SNL

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mdijon
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quote:
Originally posted by Golden Key:
Jahi's still alive, per her mother, and dead, per most medical folks.

No-one could argue her body is dead as her heart is beating but would argue about brain death. The really bizarre aspect of this is that in many countries death certificates can be issued based on brain death, which then allow organ harvesting for transplantation.

Which I find disturbingly confusing. I understand how it comes about and the logic, but I find it deeply weird on an emotional level.

I would say that Jahi McMath's case is pretty ghoulish and I'm not sure that the family should have such rights over the body that they can treat it how they wish. The state doesn't let a family do ghoulish things with a dead body (like not dispose of it within a certain time period for instance), and it seems strange that a family has such absolute right to a brain dead body.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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Golden Key
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Patdys:

quote:
Originally posted by Patdys:
The best person for a prognosis guess (And it is a guess) is an old bastard* palliative care doctor who doesn't know you. Partly cos they will guess a bit better most of the time and partly cos they'll be nice when they tell you.

*unisex bastard- can be male or female and to be honest higher proportion of female palliative care docs in my world.

An "old bastard" will "be nice when they tell you"??

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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"
--"I'm not giving up--and neither should you." --SNL

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mdijon
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quote:
Originally posted by Doublethink.:
Is it really the right to make the decision they are concerned about, or is it that the decision should be the one they want?

quote:
Originally posted by Golden Key:
Possibly both, if they think they know what's right.

The right to make the decision that Doublethink is talking about is that of the parents. So when campaigners' views don't line up with the parents' views then we would then determine which was the priority in their minds; the parents' right to choose or the desire to preserve life to whatever end against whatever odds.

[ 13. July 2017, 06:01: Message edited by: mdijon ]

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mdijon nojidm uoɿıqɯ ɯqıɿou
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Patdys
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quote:
Originally posted by Golden Key:
Patdys:

quote:
Originally posted by Patdys:
The best person for a prognosis guess (And it is a guess) is an old bastard* palliative care doctor who doesn't know you. Partly cos they will guess a bit better most of the time and partly cos they'll be nice when they tell you.

*unisex bastard- can be male or female and to be honest higher proportion of female palliative care docs in my world.

An "old bastard" will "be nice when they tell you"??
Absolutely,
You tell the truth.
But you don't have to use the truth as a club.

and old bastard is a term of endearment in my world.

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Marathon run. Next Dream. Australian this time.

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Doublethink.
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quote:
Originally posted by mdijon:
quote:
Originally posted by Golden Key:
Jahi's still alive, per her mother, and dead, per most medical folks.

No-one could argue her body is dead as her heart is beating but would argue about brain death. The really bizarre aspect of this is that in many countries death certificates can be issued based on brain death, which then allow organ harvesting for transplantation.

Which I find disturbingly confusing. I understand how it comes about and the logic, but I find it deeply weird on an emotional level.

I would say that Jahi McMath's case is pretty ghoulish and I'm not sure that the family should have such rights over the body that they can treat it how they wish. The state doesn't let a family do ghoulish things with a dead body (like not dispose of it within a certain time period for instance), and it seems strange that a family has such absolute right to a brain dead body.

What confuses me about her case, is that I understood brain death to mean that the brain would no longer produce or cause the production of the range of hormones etc necessary to the body's function - and therefore the body would degrade over time.

There is clearly a public confusion about what death means, likewise life (cf a million abortion arguments). I believe that we should not allow our definitions of these fundamental states to be determined by the current state of our technology. We also can not separate our definition of one, from the other.

There is, it seems to me, some kind of conversation to be had about what constitutes life independently sustained.

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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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mr cheesy
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There is an interesting interview with Pence doing the rounds where he claims that the Charlie Gard tragedy is what happens when you have a single-payer health system.

(Please note I have not checked that this is a reliable report of Limbaugh's interview, it might easily be a made-up story).

Leaving the possibility that it is a fake story to one side, the idea is quite an engaging one. It is unlikely that little Charlie Gard would have got specialist treatment in the USA without an enormous bill (or having wealthy parents with amazing health insurance) and yet the WH are plugging into the fears that some have of "socialist healthcare" by pretending that he has better survival chances in the USA.

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mr cheesy
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Here is the transcript of the above interview. The website I linked to above looked a bit weird, but the substance of that part of the interview was correct.

And also, let's just say it now, incorrect. Decisions about this poor child's healthcare have nothing to do with how much it costs and everything to do with what is good for him.

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Jane R
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Golden Key:
quote:
An "old bastard" will "be nice when they tell you"??
Palliative care specialists are great at telling you (compassionately) that you're going to die. They get a lot of practice at it.

Judging from my (limited) experience of oncologists, I think Patdys's characterization of them as starry-eyed optimists is spot-on. They are fighting alongside their patients to defeat the Big C; they hate to lose. They are not 'disinterested parties.'

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BroJames
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It's hard to know whether Pence is very ignorant about the Charlie Gard situation, very stupid, or deliberately deceptive for political ends. The question is absolutely not about whether treatment can be afforded. The question is whether any further treatment will do any good, or simply require Charlie to be put through further therapy which cannot help him, and meantime require the continuance of all that is involved in providing him with life support.

There is no clinical or experimental evidence that the proposed therapy will be effective for his condition, just a theoretical possibility that it might. Even if it does help the underlying condition, even the doctor proposing the therapy agrees that it cannot reverse the brain damage Charlie has already suffered.

One thing I haven't seen and don't know is whether the US legal system has something comparable to the court appointed guardian who is to act in the interests of a person who cannot speak for themselves, and will defend that person's interests even against their parents or other next of kin.

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