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Source: (consider it) Thread: Medical treatment--who gets what, who decides, who pays?
orfeo

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quote:
Originally posted by Leorning Cniht:
quote:
Originally posted by orfeo:
The fact is that UK and Australian law BOTH start from the fact that it's a parent who has general responsibility for a child's welfare.

Right. But to take a different example, suppose a child has income (because he's a child actor, say). Everyone agrees that the parents get to manage the child's money in his best interests, with some reasonably wide latitude as to what "best interests" means, but I think in both the UK and Australia, if a parent spent his child's income on expensive whisky and cheap women, he'd find himself in a certain amount of legal trouble.

Is that not so?

I believe there are general laws requiring parents to look after a child's welfare, yes. Whether they extend as far as "you must ensure your child is not just fed and clothed and educated, but stays wealthy", I'm not so sure.

But again, an example of "the parent wants to do something bad" is just not relevant to a case such as this. The argument isn't about stopping a parent trying to do something bad, the argument is about doctors trying to get out of doing something pointless. And how that has weirdly morphed into Doctor 1 preventing Doctor 2 from doing something that Doctor 1 regards as pointless.

There is absolutely no doubt that courts have the power to step in and stop parents from doing something bad to their child. But given everyone in court bent over backwards to say how wonderful and loving these parents are, it's completely irrelevant to the case at hand. There is zero evidence of harmful treatment here, it's about futile treatment.

And I haven't got the slightest problem with Doctor 1 obtaining the court's agreement that Doctor 1 doesn't have to carry out treatment that Doctor 1 regards as futile. Because that's fundamentally about the doctor's usual obligations to provide treatment. What sets all my alarm bells ringing is the prospect of Doctor 2 having their own opinion re the efficacy of treatment overridden and being required to abide by the opinion of Doctor 1.

[ 26. July 2017, 03:04: Message edited by: orfeo ]

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Leorning Cniht
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quote:
Originally posted by orfeo:

There is absolutely no doubt that courts have the power to step in and stop parents from doing something bad to their child. But given everyone in court bent over backwards to say how wonderful and loving these parents are, it's completely irrelevant to the case at hand. There is zero evidence of harmful treatment here, it's about futile treatment.

My understanding of the logic of the case is that it is precisely about harmful treatment.

Nobody is arguing that Charlie's parents are anything other than loving parents who want the best for their child - I agree. But to me, the logic of the case is that to artificially prolong Charlie's life past the point of futility is harmful. And that provides the grounds for the court to intervene.

If the treatment were not futile, then we wouldn't be past the point of futility, and so there's no hard (or perhaps alternatively the harm is outweighed by the chance of a recovery). Hence the argument about the futility or otherwise of the treatment.

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Golden Key
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orfeo--

Thanks for your sane posts.

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orfeo

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quote:
Originally posted by Leorning Cniht:
quote:
Originally posted by orfeo:

There is absolutely no doubt that courts have the power to step in and stop parents from doing something bad to their child. But given everyone in court bent over backwards to say how wonderful and loving these parents are, it's completely irrelevant to the case at hand. There is zero evidence of harmful treatment here, it's about futile treatment.

My understanding of the logic of the case is that it is precisely about harmful treatment.

Nobody is arguing that Charlie's parents are anything other than loving parents who want the best for their child - I agree. But to me, the logic of the case is that to artificially prolong Charlie's life past the point of futility is harmful. And that provides the grounds for the court to intervene.

If the treatment were not futile, then we wouldn't be past the point of futility, and so there's no hard (or perhaps alternatively the harm is outweighed by the chance of a recovery). Hence the argument about the futility or otherwise of the treatment.

Having read the court case, in my view it is framed in terms of futile treatment, not harmful treatment. And I think that makes all the difference.

I also think it's deeply dangerous to conflate "this treatment is futile" with "this life is futile". Which you are coming close to doing.

[ 26. July 2017, 03:56: Message edited by: orfeo ]

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Curiosity killed ...

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The original training I did in the Children's Act 1989 was in 1989 or ]1990, so I have had to look up the changes. This article outlines some of the changes brought about by the act, but highlights that this legislation changed the concept under the law from parental rights to parental responsibility. I suspect it followed one or other of the highly publicised failures in care that led to the death of a child, most of this legislation does.

According to this site:
quote:
The Children Act sets out what the Court must pay particular attention to when considering a child's welfare. Those things are:

(a) the ascertainable wishes and feelings of the child concerned (considered in the light of his age and understanding);
(b) his physical, emotional and educational needs;
(c) the likely effect on him of any change in his circumstances;
(d) his age, sex, background and any characteristics of his which the court considers relevant;
(e) any harm which he has suffered or is at risk of suffering;
(f) how capable each of his parents, and any other person in relation to whom the court considers the question to be relevant, is of meeting his needs;
(g) the range of powers available to the court under this Act in the proceedings in question.

I suspect that what is under consideration in the Gard case is (e) any harm he has suffered or is at risk of suffering.

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Doublethink.
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Yes, the hospital believe he may be in chronic pain, so futile treatment = prolonged suffering.

But anyway, the point of the dispute going to court is precisely that the doctors don't get to be the final arbiter of this.

[ 26. July 2017, 06:19: Message edited by: Doublethink. ]

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orfeo

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But what's the dispute?

There's an Australian case on IVF I will link to later when I'm home which had a 3rd party trying to dispute an agreed decision between patient and IVF provider.

It seems to me that any of us could "dispute" the wisdom of the proposed alternative treatment. But that doesn't mean we could go to court to have that dispute resolved.

[ 26. July 2017, 06:46: Message edited by: orfeo ]

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Doublethink.
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Parents thought the treatment might delay his death, medical team thought the treatment was futile and therefore likely to leave the child suffering for a prolonged period of time.

Wider context, literally anyone in the UK can apply for an emergency protection order for a child - though in practice these are universally applied for by local authority's (city council social care department).

There is a general responsibility that if you are in contact with a child you have a duty to act in their best interest, and if you are concerned they are at risk of significant harm - you have a duty to do something about that.

[ 26. July 2017, 06:53: 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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Doublethink.
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Any sort of professional contact, that is.

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BroJames
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In a nutshell, the hospital is saying that no treatment will improve Charlie's condition, and that he is probably suffering, in part because of the procedures required to keep him alive. Therefore he ought to be allowed to die. The parents have argued that there is a treatment that might improve his condition, therefore they ought to be allowed to remove him from the hospital with the necessary medical help to keep Charlie alive, and fly him to the USA for treatment.

The court has ruled that the parents' hope is a vain hope. There is no realistic chance of any treatment improving Charlie's condition, that he might be suffering, and that he should be allowed to die. The court has judged that it is not in. Charlie's best interests to be kept alive for longer, with the risk of continued suffering, so that he can undergo a treatment which will not help him.

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Doublethink.
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One of the things that annoys me about this case, is that the American professor who blithely asserted the 10% chance of success of his treatment to Charlie's parents, that is not even tested in mice for this condition let alone actual humans, was invited to come to the UK in *January* to examine the child and his records. Apparently did fuck all for six months, then looked at the new brain scans and said - well, actually, too late now.

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Boogie

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quote:
Originally posted by Doublethink.:
One of the things that annoys me about this case, is that the American professor who blithely asserted the 10% chance of success of his treatment to Charlie's parents, that is not even tested in mice for this condition let alone actual humans, was invited to come to the UK in *January* to examine the child and his records. Apparently did fuck all for six months, then looked at the new brain scans and said - well, actually, too late now.

Also, 10% of almost nothing is still almost nothing. After all his 'treatment' the baby could/would still be suffering pain and unable to communicate the fact - hell on earth.

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mdijon
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Orfeo, I think you may not have considered the fact that the hospital would be required to undertake considerable agency in making the transfer. The child was attached to a ventilator and various other drips. It wasn't a case of the parents scooping up the child and taking them to a waiting chopper.

They would have to make assiduous preparations, assist in making the transfer to a portable ventilator, and likely secure a form of IV access suitable for the trip to hand over to the transfer team.

It is effectively a referral for treatment undertaken outside the country.

For me a major factor (no idea if this is reflected in law) is how whacky and involved the proposed treatment is. If you can find a significant minority of mainstream doctors who think it might be worth a shot then it shouldn't be down to an individual doctor to stand in the way (or get the law to help them stand in the way).

Also, I think homeopathy is whacky and the vast majority of medical doctors agree. But how much harm would there be in administering what I think is nothing to humour grieving parents?

Once you get to experimental treatment requiring arduous transfers (and transferring patients on intensive care is not trivial) with the overwhelming majority of mainstream doctors saying it is whacky, then I don't think it is reasonable that the parents be given the right to force the hospital to comply.

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Jane R
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orfeo:
quote:
There's an Australian case on IVF I will link to later when I'm home which had a 3rd party trying to dispute an agreed decision between patient and IVF provider.
The hospital isn't a third party. Under UK law, the hospital (in the persons of the team currently caring for Charlie) has a responsibility (or duty of care, as Doublethink put it) for Charlie's welfare. Under normal circumstances, you're right, their responsibility would not be allowed to override the parents' rights to decide what should be done for/to their child. But these are not normal circumstances.
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orfeo

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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.

I would say more but I really don't have time and might not for the next day or two.

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orfeo

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The hospital has a responsibility towards the child in relation to the treatment they provide. They have responsibility for the treatment. But they do not have responsibility for the child. And it's slipping from one of those ideas to the other that is at the heart of this.

Similarly, duty of care towards the child is not the same thing as care of the child.

[ 26. July 2017, 10:34: Message edited by: orfeo ]

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Boogie

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A thoughtful article.

By someone who understands.

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Jane R
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orfeo:
quote:
Similarly, duty of care towards the child is not the same thing as care of the child.
Well, IANAL but it seems to me that GOSH are providing both, in very difficult circumstances.

I can understand why the parents want to take him home to die. However, the hospital is opposing this on practical grounds - not out of a desire to prolong anyone's agony, least of all Charlie's.

quote:
Doctors at the London hospital have said moving Charlie to a hospice is the best option as a ventilator would not fit through the couple's front door in Bedfont, west London.
[from this article ]
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Gee D
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As Orfeo says, they are entirely different concepts. For example, there is a duty of care to any patient in relation to eg the quality of treatment, the cleanliness of premises and so forth. The duty will set a standard of care and if damage flows from the breach of the standard then there can be an award of damages.

Now, while they have these duties in caring for a patient, they do not have the overall care of a patient - there is a real limit for example in a hospital's choosing what treatment is to be carried out; such matters are the role of the patient, or the person, such as a parent, who has that power for a patient.

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quetzalcoatl
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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.

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BroJames
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quote:
Originally posted by orfeo:
The hospital has a responsibility towards the child in relation to the treatment they provide. They have responsibility for the treatment. But they do not have responsibility for the child. And it's slipping from one of those ideas to the other that is at the heart of this.

Similarly, duty of care towards the child is not the same thing as care of the child.

If the hospital believes that the parents are going to do something which is harmful to the child, then there is an obligation to prevent that happening. They do not have the authority in their own right to substitute their own judgment for that of the parents. Instead they ask the court to decide. The applicable law is set out in A (Children), Re [2000] EWCA Civ 254 as follows:
quote:
There is, however, this important safeguard to ensure that a child receives proper treatment. Because the parental rights and powers exist for the performance of their duties and responsibilities to the child and must be exercised in the best interests of the child,

"... the common law has never treated such rights as sovereign or beyond review and control", per Lord Scarman in Gillick at p. 184 A.
Overriding control is vested in the court. This proposition is well established and has not been the subject of any challenge in this appeal. Because of the comment in the media questioning why the court should be involved, I add this short explanation. Long, long ago the sovereign's prerogative to protect infants passed to the Lord Chancellor and through him to the judges and it forms a part of the inherent jurisdiction of the High Court.

Although the Children Act 1989 sets out a statutory scheme in relation to issues around care, it is not directly relevant to this case except that at the beginning it enacts (for those circumstances) what is the generally applicable law that in proceedings the interests of the child are paramount.
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mdijon
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quote:
Originally posted by orfeo:
You all seem to think that being someone's treating doctor at present somehow gives a general power to manage all treatment.

I don't think anyone thinks that. On the other hand I can't believe anyone thinks the opposite - i.e. that the hospital has no role or responsibility in thinking about the treatment parents want to subject a child to, especially if it involves doctors with peculiar practices out of the Country.

We also don't want parents chaotically "opinion shopping" within the NHS, so the hospital would have a responsibility there, although the private system is perfectly tolerant of that kind of behaviour.

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Leorning Cniht
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# 17564

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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.

Anyone may apply for such an order. If you convince the court that the parents are not acting in the best interests of the child, that the child will suffer significant harm unless the order is made, and that it is in the best interests of the child for the order to be made, then the court can step in and overrule the parents.

It's a different application of the same power that allows the court to remove a child from an abusive home.

It is not that the hospital starts out with some kind of shared parental responsibility - it is that they, like anyone else, may apply to the court for an order preventing a child's parents from causing him serious harm.

The other side of the coin is that hospitals, social workers, and similar professionals have a duty to intervene if they think that such an order may be necessary. This doesn't give them extra rights*, but it gives them an obligation to apply for a court order if they think it necessary: they have a positive duty to take action for the welfare of a child that comes into their sphere that is not present for some random third party.


*IIRC, social workers can apply for an emergency order to require parents to grant them access to a child in order to perform an assessment. Random third parties can't do that. That's not relevant to this case.

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Leorning Cniht
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quote:
Originally posted by orfeo:
Having read the court case, in my view it is framed in terms of futile treatment, not harmful treatment. And I think that makes all the difference.

But that's because the futility of the proposed treatment was what was in question.

From the judge's comments,
quote:
Charlie's parents have, sadly but bravely, acknowledged and accepted that the quality of life that Charlie has at present is not worth sustaining.
A statement that all parties agree that it is not in Charlie's best interests to continue to artificially preserve his life in his present condition.

The thing that was in dispute is whether Charlie's present condition could be improved. The hospital argued no. The parents had been arguing yes, based on their proposed experimental treatment in the US.

Here's the judge again:

quote:
But if Charlie's damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?


[ 26. July 2017, 14:06: Message edited by: Leorning Cniht ]

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Bishops Finger
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It now looks as though poor little Charlie will be taken to a hospice for his final hours in this vale of tears, even though his parents still want him at home despite all the insoluble practical difficulties.

http://www.bbc.co.uk/news/uk-england-40733491

IJ

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Doublethink.
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quote:
Originally posted by orfeo:
The hospital has a responsibility towards the child in relation to the treatment they provide. They have responsibility for the treatment. But they do not have responsibility for the child. And it's slipping from one of those ideas to the other that is at the heart of this.

Similarly, duty of care towards the child is not the same thing as care of the child.

I may have the precise wording wrong, but, once you have professional involvement with a child you have a duty of care regarding your professional responsibilities *and* a duty to act in the child's best interests.

If you are discharging (even in the case of referring on) a child from your care, you have a duty to consider what you are discharging the child to.

You wouldn't, for example, discharge a one year old child to the pavement outside your hospital simply because they were medically fit. You would be expected to ensure the discharge was safe - that they wouldn't come to significant harm - the way that would normally happen is by discharging them into the care of their parents. But if you don't believe their parents are acting in their best interests and they may come to significant harm, then we end up back in the jurisdiction of the courts.

[ 26. July 2017, 19:53: 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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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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Everyone is entitled to his own opinion, but not his own facts.
[Sen. D.P.Moynihan]

An Alien's View of Earth - my blog (or vanity exercise...)

Posts: 2097 | From: Zog, obviously! Straight past Alpha Centauri, 2nd planet on the left... | Registered: Dec 2003  |  IP: Logged
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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Not every Anglican in Sydney is Sydney Anglican

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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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no path

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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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no path

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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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no path

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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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mdijon nojidm uoɿıqɯ ɯqıɿou
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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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no path

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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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The future is another country - they might do things differently there...

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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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The future is another country - they might do things differently there...

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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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no path

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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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mdijon nojidm uoɿıqɯ ɯqıɿou
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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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Technology has brought us all closer together. Turns out a lot of the people you meet as a result are complete idiots.

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