Thread: Medical treatment--who gets what, who decides, who pays? Board: Purgatory / Ship of Fools.
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Posted by Golden Key (# 1468) on
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On the "Oops" US presidential thread in Purg, we got to discussing the matters in this subject line, especially in regards to Charlie Gard, a UK baby who's terminally ill.
Discussion not limited to Charlie nor the NHS.
I'll paste quotes into the next post.
Posted by Golden Key (# 1468) on
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Quotes from the "Ooops" thread:
Posted by Barnabas62 (# 9110) on 29 June, 2017 09:23 PM :
quote:Originally posted by romanlion:
quote:Originally posted by Jane R:
And who do you think has been keeping Stephen Hawking alive all these years?
The same system looking after Charlie Gard?
Worth one response in Purgatory. Yes, I'm sure that there would be a practitioner or two in the US prepared to offer the modern equivalent of snake oil, at an exorbitant price, to Charlie Gard's desperate parents. But what they have received in the UK is honest, professional, non-exploitative advice, which is in their best interests and also those of their desperately ill baby son.
I guess that conflicts with your libertarian philosophy. If they are desperate enough to want to spend money raised charitably in the forlorn hope that something might be done, then isn't it wonderful that in the US there are folks prepared to take a shed load of that money to exploit their desperation.
I think the NHS and the courts show that the UK approach is wiser and better in this case. And also kinder.
I'm sure YMMV, but you're just wrong.
Posted by mdijon (# 8520) on 29 June, 2017 09:49 PM :
quote:Originally posted by Jane R:
And who do you think has been keeping Stephen Hawking alive all these years?
quote:Originally posted by romanlion:
The same system looking after Charlie Gard?
I think you'll find that severe mitochondrial disorders causing profound neurological damage have a very poor outlook wherever you are in the world, irrespective of the availability of experimental unproven treatments.
But I'm sure you knew that and were looking for a bit of mud.
If you want to denigrate the NHS there are plenty of other systems that arguably run better. French, German and various Scandinavian systems compare extremely favourably. They're all socialized of course.
I have heard some intelligent Republican arguments against state interference in healthcare, but I don't think you've hit on any yet. And pretending that the healthcare outcomes are better in the US is definitely not one of them.
Posted by Golden Key (# 1468) on 30 June, 2017 12:25 AM :
Barnabas--
[Votive] for Charlie, family, and all affecting his care.
I have no idea what the right decision would be in this case. But experimental and "one in a million" treatments do sometimes help, if only to give a little more time, and people fight to get them. Why shouldn't Charlie's parents fight for him?
Note: I hadn't heard of this until romanlion mentioned it. I did a quick search, and just skimmed through the results page. (Looked too painful to go further.) But I gather C is on life support, and there's been a big fight about either the EU taking him off life support, or his parents taking him to the US for special treatment.
Posted by mdijon (# 8520) on 30 June, 2017 12:29 AM :
quote:Originally posted by Golden Key:
But experimental and "one in a million" treatments do sometimes help, if only to give a little more time, and people fight to get them. Why shouldn't Charlie's parents fight for him?
It would be worth another thread to do this properly if people are interested, but a summary my concern with the experimental and one-in-a-million approach is that a) one can't justify substantial human suffering on that basis b) the expense isn't sustainable anywhere in the world and c) if we do that we'll never find out which treatments actually work and it's the end of rational medicine.
Posted by Golden Key (# 1468) on 30 June, 2017 12:45 AM :
mdijon--
If you want to start a new thread, please do. Thx. [Smile]
Posted by Jane R (# 331) on 30 June, 2017 03:26 AM :
Golden Key:
quote: I have no idea what the right decision would be in this case. But experimental and "one in a million" treatments do sometimes help, if only to give a little more time, and people fight to get them. Why shouldn't Charlie's parents fight for him?
They did. They fought for him to be kept alive. The medical team responsible for his care argued that being flown to the USA for an experimental treatment that was extremely unlikely to work was not in his best interests and he should be allowed to die with dignity.
This went all the way through the British court system before being referred to the European Court of Human Rights. All the courts agreed with the medical experts' judgment that further treatment was not in Charlie's best interests.
The ECHR (which, incidentally, is not an agency of the European Union) merely upheld the decision of the (many) British courts which ruled on this matter. But it was a win-win situation for the tabloids, because if the ECHR had ruled in favour of Charlie's parents they could have had banner headlines about Loss of Sovereignty...
Doctors hate to lose their patients, especially when treating babies and small children. The medical team will not be rejoicing today; they'll be sad too.
Oh, and what Barnabas and mdijon said.
I suppose I ought to go and join in lilbuddha's Hell thread, but I don't think it's worth arguing with trolls.
[Votive] for the Gards.
Posted by Golden Key (# 1468) on
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Info re Charlie Gard:
"Charlie Gard" (Wikipedia). An article stub, at this point, but there are links to more info, including a copy of a court decision.
"Charlie's Fight". Info and fundraising.
"This terminally ill infant will be allowed to die. But first, his parents will say goodbye." (Wash. Post; didn't see a pay wall).
Posted by Patdys (# 9397) on
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There are four principles of health ethics.
1) Autonomy - the patient's right to choose.
In my locality, it is legislated that we must follow a binding refusal.
However we cannot be forced into providing medical treatment that we do not believe is in the interest* of the patient.
* From the act quote:
is under no duty to use, or to continue to use, life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patient's representative has requested that such measures be used or continued)
2) Beneficence- do the right thing by your patient.
3) Non maleficence -Don't harm your patient.
4) Justice- Sharing of limited resources.
These theoretically decide the answer to the OP. The community through their politicians has significant impact. The reality as you would expect is how these principles are argued. And you thought biblical discussion opened a can of worms...
It seems to me that autonomy is often given more weight than it should. It is one of a number of principles - not the only one.
I am unable to comment on the Charlie Gard case.
What I would say is these principles should be used in a discussion, and never wielded as a club.
Posted by simontoad (# 18096) on
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Nice post Pat. I think you've got it in one.
Posted by Ricardus (# 8757) on
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Am I right in thinking the sticking-point in the Charlie Gard case is that he is on permanent life-support, and so he can't undergo any experimental treatment without the active participation of his current doctors? And they, in their professional judgement, don't believe it would be in the child's best interests, hence the court cases.
(I doubt if a US hospital would want to participate either - given the risk of being sued if it went wrong.)
If he had a condition that was horrible but which allowed him enough independence to get to America under his own steam (so to speak), I didn't think the parents would have to ask permission off anyone to take him there, although obviously if it went wrong and they had ignored medical advice they could be prosecuted for child neglect.
Posted by simontoad (# 18096) on
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law of guardianship is probably relevant. Know squat about it but.
Posted by Gee D (# 13815) on
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A mate of mine, a Supreme Court judge, had to decide what he still calls the most harrowing case he's ever had to deal with in a legal career of about 50 years. The plaintiff was a young man, aged 27 of the time of the case. When he was 16 or so, he'd received horrific injuries which meant that he was totally unable to care for himself and was reliant upon a life support system. He could still speak and think, though, and knew the condition he was in. He also knew that the experts' predictions of a shortened life span had been correct and that the symptoms they had predicted as those of his last year or so were starting to appear. While he had been reasonably pain free until then, that would soon change and his remaining time would be worse and worse. He wanted the life support turned off and to die on his 28th birthday.
The hospital was very reluctant to do so, looking at a possible liability. The young man brought the legal proceedings for declarations that he was entitled to proceed as he wished. Both parties were represented by excellent Senior Counsel and the facts as outlined above were pretty much uncontested. The evidence from the plaintiff was clear that this was his own wish and not forced upon him by his family.
The decision was that he was entitled to have the system turned off - his brother doing that with parents and other family members present. He survived about 6 hours, lapsing into unconsciousness an hour or so beforehand.
As asides - the plaintiff's evidence was given in the hospital, the judge travelling there to hear it. Judgment was also given there rather than in a courtroom.
There have been similar cases with children and in those it is always necessary to obtain a court order. In Oz, the UK and I assume also in NZ, Canada and the remaining Commonwealth monarchy, the monarch is parens patriae, parent of the country, with a special care for those under a legal disability. I assume that a suitably republican version of the theory operates in the US and would if ever we get a republic here.
Posted by quetzalcoatl (# 16740) on
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The Charlie Gard case isn't that controversial, is it? His doctors say that's he's in constant pain, and has very poor life prospects. I can understand his parents wanting to go on with treatment, but at the same time, it seems cruel to me.
Posted by mdijon (# 8520) on
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quote:
Originally posted by Patdys:
There are four principles of health ethics.
And a difficulty is that they are in conflict. Autonomy of the parents in this case (i.e. allowing them to put Charlie through experimental treatment) opposes non-maleficence in the opinion of the doctors.
And justice (resources for all) opposes a motivation to do everything possible for an individual patient, irrespective of the possible outcomes.
There's another point for me - and that is that medicine needs to be founded on rationality unless we want to go back to leeches and miasma. That means that we don't just throw experimental treatment at anyone who wants it without some plan for working out if it works or not.
If it's experimental treatment it should be used in an experimental setting, so that at the end of it we know more about treating patients than we did at the start. That includes establishing a proper clinical trial protocol with monitoring and ethical approval, not just having a go.
It is the choice between making a map of the sea as one sails and striking out in any random direction in hope with no chart to leave behind.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Gee D:
A mate of mine, a Supreme Court judge, had to decide what he still calls the most harrowing case he's ever had to deal with in a legal career of about 50 years.
Others might find my view twisted, but I take some comfort in the idea that a 27 year old man was able to express his wishes in that dark situation, to regain control of his destiny and behave with dignity, and that a court system took it all seriously and, based on what we read here, treated the situation with the dignity it deserved.
Posted by Leorning Cniht (# 17564) on
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quote:
Originally posted by mdijon:
And justice (resources for all) opposes a motivation to do everything possible for an individual patient, irrespective of the possible outcomes.
There is a difference between "what should we permit" and "what should we fund".
If one is considering the allocation of public funds, then justice and value-for-money must be considerations.
If one is a health insurance company, one must surely have made similar determinations as to the treatments having purchased a particular insurance entitles a patient to.
But if a patient has private resources - either because they're rich, or because they can persuade lots of people to donate some money to their photogenic offspring - then the question of justice and value-for-money doesn't arise. For it can't be right that it's OK to spend your money on a flash holiday, but not on an experimental medical treatment.
[ 02. July 2017, 16:02: Message edited by: Leorning Cniht ]
Posted by quetzalcoatl (# 16740) on
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I suppose romanlion's post was making the point that a socialized medicine will neglect people like Charlie Gard, whereas private medicine will not. Is that right? I can't get my head round that, as the decisions over Charlie were medical ones, I assume.
Posted by mdijon (# 8520) on
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quote:
Originally posted by Leorning Cniht:
For it can't be right that it's OK to spend your money on a flash holiday, but not on an experimental medical treatment.
Agreed, justice doesn't come into it in that sense, but it does in terms of not allowing a vulnerable family to be exploited.
It is unjust if a quack can make money from a treatment that has no basis. It's illegal to sell people timeshare holidays outside certain safeguards, the same should be true of medical treatment.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by quetzalcoatl:
I suppose romanlion's post was making the point that a socialized medicine will neglect people like Charlie Gard, whereas private medicine will not. Is that right? I can't get my head round that, as the decisions over Charlie were medical ones, I assume.
Yes, they were medical decisions. Socialized medicine gave Charlie Gard intensive care treatment for months that would have financially crippled anyone without gold-plated insurance and his parents will not pay a penny.
Private medicine would have sucked them dry, and then allowed them to fund raise through friends and family to shovel more money into the open maw of the profit-driven system for a treatment that had little evidence to support it.
Posted by BroJames (# 9636) on
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In the UK courts, the best interests of the child are, by law, treated as paramount. The case has come about because in the opinion of the medics treating Charlie Gard, it is not in his best interests to transport him to America for a treatment they consider has little or no prospect of success. In the opinion of the parents, however, even the very small prospect of success the experimental treatment is worth trying for, and in Charlie Gard's best interests.
I imagine there will have been very considerable discussions between the hospital and the parents before the case ever came to court, but they weren't able to reach a common mind. At that point the courts were required to adjudicate. The High Court decision can be read online. it has been upheld on appeal in the Court of Appeal. The Supreme Court would not accept a further appeal, and the European Court of Human Rights has endorsed the approach of the UK courts (link to PDF download). It seems to be agreed that there is no evidence to show that the treatment would be effective in dealing with Charlie's condition, and that in any event he has suffered structural brain damage which the treatment cannot ameliorate.
romanlion's post was simply ignorant.
[ 02. July 2017, 17:42: Message edited by: BroJames ]
Posted by Leorning Cniht (# 17564) on
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quote:
Originally posted by mdijon:
It is unjust if a quack can make money from a treatment that has no basis. It's illegal to sell people timeshare holidays outside certain safeguards, the same should be true of medical treatment.
Oh good - that's all the homeopaths out of business, then.
Of course, such quacks are by law limited in the language that they are permitted to use, but the necessary circumlocutions do not have the effect of preventing the snake oil merchants from making lots of money.
It does not help that obvious quackery such as homeopathy and crystal healing gets lumped in with things that might actually have an effect beyond the placebo as "alternative" therapies.
(In the case of Charlie Gard, the proposed experimental treatment had some theoretical basis for suggesting that it might work, although when the US doctor was made aware of the full details of Charlie's condition, he agreed that there was little prospect of a significant improvement in quality of life even if the treatment was "successful".)
One can imagine a similar case, where an untried therapy is proposed, and there is reason to believe that a successful treatment would significantly improve a patient's life.
In such a case, if I were the patient, and I had reason to believe that the theory behind the untried therapy was sound, I would be inclined to try it.
[ 02. July 2017, 19:08: Message edited by: Leorning Cniht ]
Posted by Gee D (# 13815) on
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mdijon , I see and accept your point about the dignity of the procedure and in giving effect to the wishes of the plaintiff. It's still harrowing to undertake the enquiry into the freedom and authenticity of his expression, and in doing so understand something of the desperation of the position which has driven him there.
And brojames. the prime interest you set out must operate; the role of the court is to dispassionately determine that on the basis of the evidence before it. In the Charlie Gard case, the evidence seems to have been pretty powerfully in favour of no trip to the US, but in others that may not be as easily decided.
[ 02. July 2017, 22:26: Message edited by: Gee D ]
Posted by Ricardus (# 8757) on
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quote:
Originally posted by Leorning Cniht:
quote:
Originally posted by mdijon:
It is unjust if a quack can make money from a treatment that has no basis. It's illegal to sell people timeshare holidays outside certain safeguards, the same should be true of medical treatment.
Oh good - that's all the homeopaths out of business, then.
Of course, such quacks are by law limited in the language that they are permitted to use, but the necessary circumlocutions do not have the effect of preventing the snake oil merchants from making lots of money.
But if I ignore medical advice and buy homeopathic sugar pills off the Internet, that's between me and the retailer. Whereas - correct me if I'm wrong - Charlie Gard's experimental treatment would have required his doctors to do something, which would be the equivalent of expecting my doctor to feed me the homeopathic remedy if I was somehow unable to administer it to myself.
IOW, there may be freedom to choose one's own medical treatment, but there is no freedom to expect one's doctors to participate in that treatment against their own professional judgement.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by mdijon:
It is unjust if a quack can make money from a treatment that has no basis. It's illegal to sell people timeshare holidays outside certain safeguards, the same should be true of medical treatment.
quote:
Originally posted by Leorning Cniht:
Oh good - that's all the homeopaths out of business, then.
I wish. But seriously, that does limit the claims that homeopaths can make - not just the language, but for instance they can't sell cures for cancer.
quote:
Originally posted by mdijon:
In such a case, if I were the patient, and I had reason to believe that the theory behind the untried therapy was sound, I would be inclined to try it.
The trouble is that there is always a theoretical justification that purveyors of experimental treatments can come up with, and always desperate patients willing to believe against hope. I don't mind when the involves prayer, reasonably priced snake oil and friendship, but when it involves large sums of money changing hands it becomes exploitative.
I also mind when it involves smaller sums of money, and therefore everyone wants the new experimental treatment and it becomes impossible to do any controlled experiments with placebo. If the new treatment is a wondrous miracle cure for a terminal condition then we can still determine benefit in an uncontrolled experiment, but unfortunately that is hardly ever the case. So one is left with a general sense of optimism, partial improvements in outcome, but no way of distinguishing that from placebo and a flow of money from healthcare providers and patients private pockets to a company for no proven benefit.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Ricardus:
IOW, there may be freedom to choose one's own medical treatment, but there is no freedom to expect one's doctors to participate in that treatment against their own professional judgement.
Yes, there's a distinction in terms of the levels of freedom, but even when choosing and paying for one's own medical treatment there isn't total freedom for quacks to market however they like.
Homeopaths can sell you reasonably priced placebo for something self limiting, or to be used in conjunction with proven treatments, but if they charge you large sums of money for a miracle cure for cancer they will be liable for prosecution. (As would a conventional doctor making a similar mistake, of course).
Posted by wild haggis (# 15555) on
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Homeopathy would not cure poor Charlie.
If it "works" for some people, placebo or not, fine. It wouldn't be the first placebo that is used in medicine that appears to work. If it doesn't work for you don't use it. Our bodies and minds are very complex.
I can understand Charlie's parents point of view. They don't want their child to die and will do everything they can to keep him alive. But when viable options run out..............
The wee soul is on life support i.e. would not survive very long was that removed. So therefore travelling to America is not just a case of a baby on a plane. The machinery of the life support machine would need to go with him. No simple logistic feat. And very expensive to boot.
He has sever brain damage that cannot be reversed. Once brain cells die that is that. You can't recreate dead brain cells - yet.
He may be suffering but because he can't communicate the parents don't know, however the experienced doctors with much more knowledge, do.
How can you bathe a child in a bath if it is on a life support machine? I really feel sorry for the parents who don't want to let go of their precious bundle or accept the realities of his condition.
I would trust Great Ormond Street doctors more than lay people with no medical training and just wishful thinking. Our son attended. He has right sided hemi-plegia, which means part of his brain doesn't work. The right side of his body doesn't work properly and never will, in spite of physio. It can't be reversed. Charlie is in a much worse situation.
Poor wee Charlie should be given the dignity of passing to whatever God has for him. His parents need to accept that sadly death is often what happens to children who have global irreversable brain damage and the body no longer functions without machinery.
What is more humane allowing someone in dreadful pain with no prospect of life nor cognescience of the world around, and who can't function without machines, a peaceful passing, or giving into the selfish desires, however laudable, of parents who do not want to let go and have no medical knowledge of the prognoses - or refuse to accept it.
Magic bullets do not exist.
What a sad, sad state of affaires for all concerned.
Posted by Jane R (# 331) on
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Brenda: quote:
I really feel sorry for the parents who don't want to let go of their precious bundle or accept the realities of his condition.
I feel sorry for them too, but bankrupting them as well wouldn't help. And as mdijon has pointed out, in the USA they would already be bankrupt and the money for Charlie's treatment would have run out months ago.
It's a huge cultural difference between the USA and the UK (or Canada, France, Germany, Australia). I remember reading an American detective book where one of the characters had an anencephalic baby. She had the baby in hospital (no antenatal care, so the baby's condition came as a big shock) and was discharged almost immediately. And left with no backup. No support from the community, no follow-up visits from the hospital or midwife. Nothing.
I read this shortly after giving birth myself. Before my baby was born, I had three antenatal scans, a course led by a midwife on what to expect both during and after the birth, a book with all the information in so I didn't have to try and remember it all. After I was discharged I had a home visit from my GP, a lot of home visits from the midwife and a qualified nurse, more booklets and handouts and a post-natal course with other women who'd just given birth. All free of charge.
If I'd had an anenchephalic baby it would have been picked up on the antenatal scans. Most people choose to have an abortion in those circumstances, but you're not forced to: if you choose to continue all that support is still there, still free of charge. I refused one of the antenatal tests on the grounds that it carried a (small) risk of triggering a miscarriage. It made no difference to the care I received.
Not surprisingly, the odds of surviving your own birth are considerably higher in the UK than they are in the USA.
I'll take "socialized" medicine any day.
Posted by Golden Key (# 1468) on
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But, AIUI, the Gards were crowd-sourcing to fund the proposed treatment in America. Lots of *Americans* do that.
I don't know the right thing for the Gards to do. I just don't see why it's the business of any official to keep them from doing the treatment in America.
Posted by Jane R (# 331) on
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If they'd been crowdfunding to support treatment for themselves, it wouldn't have got as far as a court case. Mentally competent adults have the right to dose themselves with as much snake oil as they can afford.
The British legal system does not recognise an absolute right for parents to give or withold consent for medical treatment *for their child*. The state has a role in guarding the rights of children (and vulnerable adults) who cannot make these decisions for themselves. Usually in this kind of situation, the child's legal guardians will accept (sorrowfully, reluctantly) the judgment of the medical team. When they don't, you get cases like this.
Children are not considered to be the property of their parents in the UK.
[ 03. July 2017, 11:47: Message edited by: Jane R ]
Posted by la vie en rouge (# 10688) on
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quote:
Originally posted by Golden Key:
But, AIUI, the Gards were crowd-sourcing to fund the proposed treatment in America. Lots of *Americans* do that.
I think the reason the courts have said no isn’t because of the cost. The courts have said he shouldn’t receive the treatment because it isn’t in his best interest, because it will probably just prolong his suffering.
I can absolutely understand why his parents would want to try anything, if they think there’s a chance he might live a little longer. People aren’t always very rational about that sort of thing. I remember a former flatmate of mine whose mother had terminal cancer. When it came to the end, they attempted to resuscitate her (knowing it couldn’t be more than a temporary reprieve) and failed. It was a horrible way to die. I can’t help thinking it would have been much better for her to have good palliative care and a DNR. I do understand though. Denial is real (my flatmate / her mother had also not set any of her affairs in order).
Posted by Jane R (# 331) on
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Oh, I understand why they want to try anything that will prolong his life. I'd probably feel the same way; but if I ever am in that situation I hope I'd find the strength to let my child go peacefully, with as much dignity and as little suffering as possible. Feelings are not always a good guide to the right action.
Posted by Boogie (# 13538) on
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quote:
Originally posted by Jane R:
Oh, I understand why they want to try anything that will prolong his life. I'd probably feel the same way; but if I ever am in that situation I hope I'd find the strength to let my child go peacefully, with as much dignity and as little suffering as possible. Feelings are not always a good guide to the right action.
![[Overused]](graemlins/notworthy.gif)
Posted by la vie en rouge (# 10688) on
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Sorry, I don't think I was clear. When I say I understand why they won't let him go, I also think they're not making the best decision. In the same way that I think it would have been better not to attempt to resuscitate my flatmate's mother. But like I said, people aren't always rational in situations like that. And that's why the courts are there.
Posted by Doublethink. (# 1984) on
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I think sometimes, the idea of letting someone you love die is unbearable - literally. It can be a kindness to have someone take that decision out of your hands. Charlie's parents will always know that they fought every inch of the way and it was not their choice. Perhaps that will be of some comfort.
I doubt that Charlie is suffering though, if his brain damage is as severe as reported - it is more likely that he has minimal or no awareness.
Without a court decision of this type, there was a risk he could survive on a machine for years - experiencing nothing and anchoring his family in their moment of terrible suffering for years.
Posted by Bishops Finger (# 5430) on
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Indeed - this is, perhaps, a case where some sort of 'closure' really is needed.
Once, many years ago, when I was doing duty as Cathedral Chaplain for the day, an obviously distressed lady asked me if it was OK 'to pray for someone to die'. A discreet conversation revealed that she was concerned for someone she loved who was terminally ill. I counselled her that, yes, if it was driven by love and concern, there was no harm in asking God to relieve her friend/relative from her pain.
I only hope and pray that that was the right thing to say.
IJ
Posted by mdijon (# 8520) on
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quote:
Originally posted by Golden Key:
I don't know the right thing for the Gards to do. I just don't see why it's the business of any official to keep them from doing the treatment in America.
Because at some point it is exploitative and monstrous to take large sums of money for offering a pointless treatment to a child with no realistic possibility of benefit.
I wouldn't stop someone using super doses of vitamins and homeopathy in a similar situation, but I would stop expensive experimental gene therapy for a child with major structural brain problems.
It isn't a question of just prescribing a pill, it involves keeping a child alive with ventilation, artificial feeding, drips, central lines, and moving them around with all the complexity. To force the medical staff to do that to a baby's body with no justifiable belief in a good outcome would be barbaric.
I think doublethink is right, with substantial brain damage and a slug of sedatives just to be on the safe side there is little chance of suffering.
Nevertheless that doesn't justify devaluing the dignity of the dying body and the intensive nature of the treatment involved. I also object to the enriching of those providing worthless treatment to the desperate.
Posted by quetzalcoatl (# 16740) on
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Some v. good posts here. So, under human rights' law, parental rights do not supersede children's rights in some situations?
Posted by romanlion (# 10325) on
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Trump enters the fray...
What's the hold up? I thought they would have unplugged the poor little guy by now, that being the right/humane/compassionate thing to do and all...
Posted by quetzalcoatl (# 16740) on
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Ooh, out from under the bridge again.
Posted by Bishops Finger (# 5430) on
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Notwithstanding all the medical arguments for and against, there is still the basic (IMHO) Christian belief that death is the ultimate form of healing.
I am, at present, chronically, albeit, mildly, ill, living with a potentially life-threatening condition, but able to lead a reasonably 'normal' life. If the medics tell me next month, when I go for various check-ups, that my life expectancy is very low, I won't have a problem with that - as long as it doesn't hurt too much.
IJ
Posted by quetzalcoatl (# 16740) on
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Yeah, we should have shouted that up to the Grenfell people, who were shouting for help, never mind, death is the ultimate form of healing.
Posted by Bishops Finger (# 5430) on
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Oh, FFS....
![[Mad]](angryfire.gif)
IJ
Posted by romanlion (# 10325) on
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Immediately after a troll reference aimed at me!
![[Killing me]](graemlins/killingme.gif)
Hilarious!
Posted by quetzalcoatl (# 16740) on
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It reminds me of Lewis's abject phrase: 'term's over, the holidays have begun'.
Posted by Bishops Finger (# 5430) on
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I think you, quetzalcoatl, know what I meant (despite the knee-jerk). As for romanlion, well...
![[Projectile]](graemlins/puke2.gif)
Is it getting a bit lonely under that bridge?
IJ
Posted by quetzalcoatl (# 16740) on
:
quote:
Originally posted by Bishops Finger:
I think you, quetzalcoatl, know what I meant (despite the knee-jerk). As for romanlion, well...
Is it getting a bit lonely under that bridge?
IJ
OK, fair enough. My Sufi mates call death the wedding night, or something. I sort of get it.
Posted by Lyda*Rose (# 4544) on
:
At this point what concerns me is that his parents are not allowed to take him home to die. Are they asking for major support equipment to be set up in their home? Or could a medical transport be arranged to get him there alive (effectively taking him off life support at the door) so his parents can take him to his nursery to hold him and be with him until the end?
Posted by quetzalcoatl (# 16740) on
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It sounds too medically uncontrolled to me. You take him off life support, then transport him through London traffic, for how long? Then he starts to die? Poor kid.
Posted by Nicolemr (# 28) on
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I'm not sure but I think the hospital is allowing time for extended family and friends to gather to be there and say good-bye before they turn off life support.
Posted by quetzalcoatl (# 16740) on
:
Wow, just reading through some US social media, the NHS is basically murdering a child, that's what you get with socialized medicine, whereas good old US private health would bring him back from the brink, provided there's enough money.
Now the Pope and Trump get in on the act - it's like Barnum's.
Posted by Lyda*Rose (# 4544) on
:
quote:
Originally posted by Nicolemr:
I'm not sure but I think the hospital is allowing time for extended family and friends to gather to be there and say good-bye before they turn off life support.
Yes, but they really want him to go home. Would that be too much to ask considering their trauma?
Posted by quetzalcoatl (# 16740) on
:
What about his trauma?
Posted by mdijon (# 8520) on
:
It might not be realistic. It's pretty difficult transporting babies on ventilators.
Also what they reportedly want (to spend time with him at home) might not match up to the reality of death as soon as the ventilator is disconnected.
There's a big mismatch between the portrayals of the delivery of care people often have in mind and the actual blood, sweat and tears of reality.
For instance, there is an element of barbarism involved in repeatedly stabbing a babies body for a vein after months in intensive care with bruises over all available spots that doesn't fit well in the imagery available to most of us.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by quetzalcoatl:
It sounds too medically uncontrolled to me. You take him off life support, then transport him through London traffic, for how long? Then he starts to die? Poor kid.
You'd have to take him on a ventilator. Or he'd be dead in the lift otherwise.
quote:
Originally posted by quetzalcoatl:
My Sufi mates call death the wedding night, or something. I sort of get it.
Good call. Grenfell is very anger-provoking for me too.
Posted by Boogie (# 13538) on
:
quote:
Originally posted by quetzalcoatl:
Wow, just reading through some US social media, the NHS is basically murdering a child, that's what you get with socialized medicine, whereas good old US private health would bring him back from the brink, provided there's enough money.
Twisting the story to suit their own ends - to be expected.
Posted by Lyda*Rose (# 4544) on
:
quote:
Originally posted by mdijon:
It might not be realistic. It's pretty difficult transporting babies on ventilators.
Also what they reportedly want (to spend time with him at home) might not match up to the reality of death as soon as the ventilator is disconnected.
There's a big mismatch between the portrayals of the delivery of care people often have in mind and the actual blood, sweat and tears of reality.
For instance, there is an element of barbarism involved in repeatedly stabbing a babies body for a vein after months in intensive care with bruises over all available spots that doesn't fit well in the imagery available to most of us.
Okay, I see the sense of this.
Posted by Karl: Liberal Backslider (# 76) on
:
quote:
Originally posted by Bishops Finger:
Notwithstanding all the medical arguments for and against, there is still the basic (IMHO) Christian belief that death is the ultimate form of healing.
I thought it was the last enemy to be conquered. It never seems to be referenced positively in Scripture, and that concurs with how most people see things.
The ultimate healing is resurrection, the opposite of death; its undoing.
Were death healing, it would be logical for Christian tradition to be in favour of euthenasia - "medicine can't cure you, so we're prescribing the ultimate healing for you" - and it generally isn't.
[ 03. July 2017, 17:36: Message edited by: Karl: Liberal Backslider ]
Posted by quetzalcoatl (# 16740) on
:
quote:
Originally posted by mdijon:
quote:
Originally posted by quetzalcoatl:
It sounds too medically uncontrolled to me. You take him off life support, then transport him through London traffic, for how long? Then he starts to die? Poor kid.
You'd have to take him on a ventilator. Or he'd be dead in the lift otherwise.
quote:
Originally posted by quetzalcoatl:
My Sufi mates call death the wedding night, or something. I sort of get it.
Good call. Grenfell is very anger-provoking for me too.
It's very raw. I don't want to hear any more pastors saying that God will answer if you pray sincerely, because I bet some of those people at the top of Grenfell were praying very sincerely. And I live near it.
Posted by Soror Magna (# 9881) on
:
quote:
Originally posted by quetzalcoatl:
Wow, just reading through some US social media, the NHS is basically murdering a child, that's what you get with socialized medicine, whereas good old US private health would bring him back from the brink, provided there's enough money. ...
To be fair, I've started to realize that Americans have never had a government that seriously wanted all its citizens to have health care. It's only natural for them to have more trust in the private market, where at least they pretend to deliver health care. Private health care which costs an arm and a leg and includes gouging, but again, it's still better than what the Republicans want to do.
Someday, Americans might figure out that a health cares system is supposed to deliver health care, not just corporate profits. In the meantime, they can pretend to care about one little kid in the UK while ignoring the fact that the USA has the highest infant mortality of any developed nation.
Have I mentioned that health care is not a free market, and that free market health care is only economically viable for the wealthy?
Posted by quetzalcoatl (# 16740) on
:
Good post, Soror Magna. The right wing view seems to be that Charlie is being regimented by a death panel, consisting of bureaucrats, probably something to do with Europe. In fact, all the decisions are informed by medical advice. If the doctors say that Charlie will not get better, and is living in pain, are the judges supposed to say, never mind that, his parents must have supremacy? Maybe that is part of US law, dunno.
Posted by Doublethink. (# 1984) on
:
Possibly worth noting that the definition of death is different in the UK and USA - it is not clear to me that Charlie Gard is alive, in the sense of; would pass a brain stem test.
Posted by Boogie (# 13538) on
:
Oh for goodness sake.
Donald Trump has offered to help the parents of a terminally ill baby who lost a legal fight to take him to the United States for treatment.
How low will this man stoop for political capital?
![[Tear]](graemlins/tear.gif)
Posted by quetzalcoatl (# 16740) on
:
Trump and the Pope produce a kind of Barnum's circus. Very undignified.
Posted by Boogie (# 13538) on
:
quote:
Originally posted by quetzalcoatl:
Trump and the Pope produce a kind of Barnum's circus. Very undignified.
And cruel.
Posted by Doublethink. (# 1984) on
:
To be fair to the Pope, he made no call for outlandish provisions - just offered his support and hope for the parents to be able to with their son during his palliative care. (Not that I'd have thought that's likely to be an issue. They're not banned from the hospital or anything.)
Posted by Ohher (# 18607) on
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A pity 44.3 can't muster a bit of support for his own citizens threatened with loss of life when they lose their Medicaid.
Posted by mdijon (# 8520) on
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quote:
Originally posted by Doublethink.:
To be fair to the Pope, he made no call for outlandish provisions
I saw his statement and thought that if I was a doctor or nurse who'd just had an angst-ridden conversation explaining to the parents why we couldn't let them take their child home I could feel somewhat accused by the statement. There isn't anything in the statement to reflect what might be standing in the way of taking the child home, the implication could be that someone isn't allowing it who should allow it.
Posted by Soror Magna (# 9881) on
:
quote:
Originally posted by quetzalcoatl:
... The right wing view seems to be that Charlie is being regimented by a death panel, consisting of bureaucrats, probably something to do with Europe. In fact, all the decisions are informed by medical advice. ....
And yet they are totally ok with an insurance company, concerned only with maximizing profits, making these decisions instead. ![[brick wall]](graemlins/brick_wall.gif)
Somebody please tell them that if wee Charlie lived in pre-Obamacare USA, he would have blown through his lifetime cap in his first few days of life, if by some chance his parents had insurance. Even if an experimental treatment saved him, he could never get health insurance. How eager would these right-wingers be to pay for Charlie's home care so he can be with his family then? His family would be crowd-funding for the rest of their lives to keep him alive. If they have to declare bankruptcy - also not uncommon in pre-Obamacare USA - and sell everything they own, what happens to Charlie then?
And the ubiquity of crowd-funding of health care in the USA should be another sign that it isn't a free market ...
Posted by chris stiles (# 12641) on
:
quote:
Originally posted by Soror Magna:
And yet they are totally ok with an insurance company, concerned only with maximizing profits, making these decisions instead. Somebody please tell them that if wee Charlie lived in pre-Obamacare USA, he would have blown through his lifetime cap in his first few days of life, if by some chance his parents had insurance.
The problem is that the US media have - for the most part - bought into the rhetoric of 'death panels' and that this idea only applies to government provision, rather than insurance companies.
Posted by Amanda B. Reckondwythe (# 5521) on
:
quote:
Originally posted by Soror Magna:
Even if an experimental treatment saved him. . . .
No insurance company I'm aware of would even consider paying for an experimental treatment.
Posted by Doublethink. (# 1984) on
:
quote:
Originally posted by mdijon:
quote:
Originally posted by Doublethink.:
To be fair to the Pope, he made no call for outlandish provisions
I saw his statement and thought that if I was a doctor or nurse who'd just had an angst-ridden conversation explaining to the parents why we couldn't let them take their child home I could feel somewhat accused by the statement. There isn't anything in the statement to reflect what might be standing in the way of taking the child home, the implication could be that someone isn't allowing it who should allow it.
The statement I saw didn't suggest taking the child home.
Posted by cliffdweller (# 13338) on
:
quote:
Originally posted by Soror Magna:
quote:
Originally posted by quetzalcoatl:
... The right wing view seems to be that Charlie is being regimented by a death panel, consisting of bureaucrats, probably something to do with Europe. In fact, all the decisions are informed by medical advice. ....
And yet they are totally ok with an insurance company, concerned only with maximizing profits, making these decisions instead. Somebody please tell them that if wee Charlie lived in pre-Obamacare USA, he would have blown through his lifetime cap in his first few days of life, if by some chance his parents had insurance. Even if an experimental treatment saved him, he could never get health insurance. How eager would these right-wingers be to pay for Charlie's home care so he can be with his family then? His family would be crowd-funding for the rest of their lives to keep him alive. If they have to declare bankruptcy - also not uncommon in pre-Obamacare USA - and sell everything they own, what happens to Charlie then?
And the ubiquity of crowd-funding of health care in the USA should be another sign that it isn't a free market ...
Sigh. I've been having this precise conversation with a right wing pro life friend. I pointed out the discrepancy in infant mortality rates. I pointed out the hypocrisy of caring so much about Charlie who tragically has no chance for survival, but being so willing to deny care to millions of babies that DO have a chance for survival. I was told 'that's different-- Charlie's parents aren't asking us to pay for it"
Oh. So we're pro life-- until it costs us something
That's when I got truly nasty and brought up my granddaughter whose life was saved only 4 months ago thru the Medicare program currently on the chopping block. Without the continuation of that program she and thousands of other children with such catastrophic health conditions will die
I was accused of "making it personal"
Damn straight
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Doublethink.:
The statement I saw didn't suggest taking the child home.
The quote I find it;
quote:
For this he prays that their wish to accompany and treat their child until the end isn’t neglected.
You're right, it doesn't suggest taking the child home. It does suggest though that something is neglected. Neglecting is a transitive verb and carries an accusation that someone is doing the neglecting. It seems an unhelpful wording to me. Perhaps something is lost in translation, although one would expect attention would have been given to the English wording given the location of the child.
Posted by Golden Key (# 1468) on
:
SM--
quote:
Originally posted by Soror Magna:
quote:
Originally posted by quetzalcoatl:
Wow, just reading through some US social media, the NHS is basically murdering a child, that's what you get with socialized medicine, whereas good old US private health would bring him back from the brink, provided there's enough money. ...
To be fair, I've started to realize that Americans have never had a government that seriously wanted all its citizens to have health care. It's only natural for them to have more trust in the private market, where at least they pretend to deliver health care. Private health care which costs an arm and a leg and includes gouging, but again, it's still better than what the Republicans want to do.
Someday, Americans might figure out that a health cares system is supposed to deliver health care, not just corporate profits. In the meantime, they can pretend to care about one little kid in the UK while ignoring the fact that the USA has the highest infant mortality of any developed nation.
Have I mentioned that health care is not a free market, and that free market health care is only economically viable for the wealthy?
Frankly, most Americans have some idea of most of this. Most of us have intimate experience of at least some of it.
--We know that health insurance is hard to get and keep. And confusing as all get out.
--We know horror stories--heck, they feature on both the news and in TV medical dramas.
--We know that people face terrible choices, especially about sick kids.
--We know that, even if we're lucky enough to have insurance, we may not be able to afford the deductible and co-pays.
--We know that we may not be able to get medical care at all.
--We know that, even if we have insurance and can afford our bit, we may not have paid time off from work for appointments or sick days.
--We know, for a fact, that insurance companies will do everything they can to avoid paying--thanks to a whistle-blower who spoke before Congress, some years back.
But, given that various powers that be (PTB)--insurance industry, medical industry, big pharma, and everyone in their pockets--fight tooth and nail to keep us from having affordable health care, let alone *universal*; insist on demolishing Obama's imperfect attempt; and want to pretty much demolish Medicare and Medicaid...what do you expect us to do differently, that might actually work, become law, and *stay* law?
Some people who can't afford care are lucky enough to get occasional treatment at traveling Remote Area Medical clinics.
Two relevant articles:
1) "When Sleeping In The Car Is The Price Of A Doctor Visit" (NPR; article, transcript, and audio).
2) "Free RAM Medical Clinic this weekend in Cleveland" (WRCB).
If you think that sounds like charity clinics in 3rd world countries, you're right.
And yes, many of us do spare some care for Charlie. FYI: those decisions by not-the-parents comprise a good chunk of the fear of socialized medicine.
Yes, I am a bit , pointed in a variety of directions--at responsible parties; at experiences I've had; and at some posts on this thread. It's one thing to think "Wow, the Yanks desperately need a health care system that works", and another to think "...and they're too stupid to know that, and too lethargic to do anything about it".
[ 04. July 2017, 09:28: Message edited by: Golden Key ]
Posted by Boogie (# 13538) on
:
Stupid and lethargic are totally the wrong descriptions.
But why such fear of socialised medicine that they would rather have big business in control?
There are only two market forces - fear and greed - applying them to medicine and social care is plain wrong.
Posted by la vie en rouge (# 10688) on
:
quote:
Originally posted by Golden Key:
And yes, many of us do spare some care for Charlie. FYI: those decisions by not-the-parents comprise a good chunk of the fear of socialized medicine.
I think this is a big part of the transatlantic difference in attitude. ISTM this is not just a question about entitlement to medical treatment per se. It is also about attitudes to parents’ rights in relation to their children. AFAICT in the US it is more common to consider that children in some sense “belong” to their parents and that they should get the final say about what happens to them. This shows up in question to things like (home-)schooling and corporal punishment. In Europe the line is drawn in a different place, regarding the point at which the State can step in and say that parents are not acting in their child’s best interest. I can well believe that treatment might have continued in the US, if the money had been there for it. But again, the judge didn’t rule against treatment because of cost, but because continuing treatment was considered to be against the child’s best interest.
Posted by L'organist (# 17338) on
:
Surely a lot of the discussion about the Charlie Gard case comes down to a modern-day reluctance to accept two things: First, that there are instances where people, especially children, can't be "fixed" which underlines the ultimately limited abilities of our doctors and hospitals to preserve the life of those we hold dear.
Second, that there are - probably always will be - some conditions which we cannot screen for and for which there is, at least at the moment, no possible cure. Mitochondrial DNA Depletion Syndrome (MDDS) is one of these and although some patients with one of the variants - there are broadly three: myopathic, hepatopathic and encephalomyopathic - can be given limited treatment to extend life, there is no 'cure' as such.
In an instance such as this tragic case it has nothing to do with money because there is nothing available that would effect a cure for this child.
As for the question of who takes decisions on the future of this little boy, it all boils down to whether or not one considers that parents have an inalienable right to insist on whatever palliative care is available, regardless of whether or not it is actually working. The doctors in the Gard case say that not only are they unable to offer any condition improving treatment, they also can no longer offer effective palliative analgesia - in other words the little chap is probably in pain which cannot be properly alleviated or managed. They have no way of knowing for sure because Charlie is deaf, blind, immobile and unable to make a noise - all evidence of the catastrophic brain damage which the disease has brought about.
It is understandable that the parents don't want to take the decision to tell doctors to switch off the machines that are keeping their son alive; understandable too that they would grab at anything offered which claimed to be able to help their son. But in this instance the medical experts on both sides of the atlantic say the same thing: that there is no hope of either cure or enhanced short life; that the offer of "treatment" that has been made can have no chance of success; and that there is in any case no way of getting the patient to the USA without causing further pain.
I can't begin to imagine how the Gard parents are feeling but in this instance no amount of money or goodwill can help.
Posted by Matt Black (# 2210) on
:
quote:
Originally posted by la vie en rouge:
quote:
Originally posted by Golden Key:
And yes, many of us do spare some care for Charlie. FYI: those decisions by not-the-parents comprise a good chunk of the fear of socialized medicine.
I think this is a big part of the transatlantic difference in attitude. ISTM this is not just a question about entitlement to medical treatment per se. It is also about attitudes to parents’ rights in relation to their children. AFAICT in the US it is more common to consider that children in some sense “belong” to their parents and that they should get the final say about what happens to them. This shows up in question to things like (home-)schooling and corporal punishment. In Europe the line is drawn in a different place, regarding the point at which the State can step in and say that parents are not acting in their child’s best interest. I can well believe that treatment might have continued in the US, if the money had been there for it. But again, the judge didn’t rule against treatment because of cost, but because continuing treatment was considered to be against the child’s best interest.
It's not so much 'state rights - v- parents' rights' as 'children's rights -v - parents' rights'.
Posted by Jane R (# 331) on
:
Yes, as I said earlier, in the UK children are not considered to be the property of their parents and British law recognises that parents are not always the best guardians of their children's well-being.
[ 04. July 2017, 17:52: Message edited by: Jane R ]
Posted by Doublethink. (# 1984) on
:
Well yes, but child marriage¹ is still legal in the USA with parental approval. We'd jail the parents and take the children into care - it's a very different culture.
---
¹ Washington Post
Posted by Patdys (# 9397) on
:
quote:
Originally posted by Lyda*Rose:
quote:
Originally posted by Nicolemr:
I'm not sure but I think the hospital is allowing time for extended family and friends to gather to be there and say good-bye before they turn off life support.
Yes, but they really want him to go home. Would that be too much to ask considering their trauma?
Short answer. No.
Long Answer. No, but it depends. When I send (In my health system) someone home to die, they understand they may die enroute. There needs to be family with capacity to provide nursing care and administer simple labelled medications for symptoms. It comes down to the capacity of the family.
And then there is the whole question of the ventilator for transport etc.
It can work brilliantly. And it can go pearshaped.
quote:
Originally posted by Karl: Liberal Backslider:
quote:
Originally posted by Bishops Finger:
Notwithstanding all the medical arguments for and against, there is still the basic (IMHO) Christian belief that death is the ultimate form of healing.
I thought it was the last enemy to be conquered. It never seems to be referenced positively in Scripture, and that concurs with how most people see things.
The ultimate healing is resurrection, the opposite of death; its undoing.
Were death healing, it would be logical for Christian tradition to be in favour of euthenasia - "medicine can't cure you, so we're prescribing the ultimate healing for you" - and it generally isn't.
I would argue that you can experience healing in the face of death.
There is a difference between Hippocratic fixing and Asklepian healing.
We all die. There is no say in that. There can be substantial say in how well we die.
And that underpins the joy and challenge of palliative care.
quote:
Originally posted by L'organist:
Surely a lot of the discussion about the Charlie Gard case comes down to a modern-day reluctance to accept two things: First, that there are instances where people, especially children, can't be "fixed" which underlines the ultimately limited abilities of our doctors and hospitals to preserve the life of those we hold dear.
Indeed, modern medicine is very concerned with fixing disease and the medical profession does struggle when the fix is not possible. A focus on the person from the outset, and this culture is changing (YMMV) seems more valuable and integrated.
quote:
Originally posted by L'organist:
In an instance such as this tragic case it has nothing to do with money because there is nothing available that would effect a cure for this child.
Unfortunately, justice and limited community resources means money does come into it.
The community pays for health care, no matter the funding system. Life support is expensive and the cost is transferred into waiting lists for elective surgery for example. This is a community decision. What does the community value? Not for individual cases, but for the political policy driving health care funding.
quote:
Originally posted by L'organist:
As for the question of who takes decisions on the future of this little boy, it all boils down to whether or not one considers that parents have an inalienable right to insist on whatever palliative care is available, regardless of whether or not it is actually working. The doctors in the Gard case say that not only are they unable to offer any condition improving treatment, they also can no longer offer effective palliative analgesia - in other words the little chap is probably in pain which cannot be properly alleviated or managed. They have no way of knowing for sure because Charlie is deaf, blind, immobile and unable to make a noise - all evidence of the catastrophic brain damage which the disease has brought about.
I am not sure we mean the same thing by palliative care.
I would use the WHO definition.
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
I have not been able to find where the doctors have said they cannot provide symptom relief. That would surprise me and I would be interested to see the links.
quote:
Originally posted by L'organist:
It is understandable that the parents don't want to take the decision to tell doctors to switch off the machines that are keeping their son alive; understandable too that they would grab at anything offered which claimed to be able to help their son. But in this instance the medical experts on both sides of the atlantic say the same thing: that there is no hope of either cure or enhanced short life; that the offer of "treatment" that has been made can have no chance of success; and that there is in any case no way of getting the patient to the USA without causing further pain.
I can't begin to imagine how the Gard parents are feeling but in this instance no amount of money or goodwill can help.
Absolutely. This is truly horrible. I would argue that the parents shouldn’t be the ones to make the decision. I appreciate autonomy carries different weight in different countries.
I think it is important to note that all suffer here. The patient, family and health team.
This is not good and bad people. This is all the involved people all suffering and struggling with what the best way forward looks like.
One of the things I teach is
Don't do something, just stand there.
Being there for others.
This is one of those diabolical situations where the choice is of the least bad outcome. And they are all bad. And my understanding of theology is that the tears and struggles are shared by and with the Trinity.
Posted by Soror Magna (# 9881) on
:
quote:
Originally posted by Golden Key:
...--We know that health insurance is hard to get and keep. And confusing as all get out.
--We know horror stories--heck, they feature on both the news and in TV medical dramas.
--We know that people face terrible choices, especially about sick kids.
--We know that, even if we're lucky enough to have insurance, we may not be able to afford the deductible and co-pays.
--We know that we may not be able to get medical care at all.
--We know that, even if we have insurance and can afford our bit, we may not have paid time off from work for appointments or sick days.
--We know, for a fact, that insurance companies will do everything they can to avoid paying--thanks to a whistle-blower who spoke before Congress, some years back. ...
It's one thing to think "Wow, the Yanks desperately need a health care system that works", and another to think "...and they're too stupid to know that, and too lethargic to do anything about it".
Yep, private health insurance really sucks, doesn't it? So why stick with it? Millions of ordinary folks in the USA are already getting care through government and non-profit insurance programs. (They're the ones holding the signs that say, 'Keep government out of Medicare'.) Why not everybody? If it isn't lethargy or stupidity, it's whatever the word is for "I would rather be fucked over by a corporation than be served by my government because FREEDOM!"
Posted by Ohher (# 18607) on
:
quote:
Originally posted by Soror Magna:
"I would rather be fucked over by a corporation than be served by my government because FREEDOM!"
This. It's almost as though people thought the Declaration of Independence (hey, it's still July 4 where I am) spoke of the unalienable rights to liberty, life, and the pursuit of happiness. You know, because the order matters. That's why Adam got to call the shots, right? He was created first?
Yay. We're free to die.
[ 05. July 2017, 02:50: Message edited by: Ohher ]
Posted by Boogie (# 13538) on
:
Private health insurance works very well in Germany. Everyone gets it through work, you choose the 'extras' but the basics are for all. Anyone who doesn't work gets health insurance through state benefit.
All hospitals are private.
It works. We are too precious here in the UK about the NHS and they are too silly in the US about giving benefits to all who need it.
I say to both - look at the German model and learn.
Posted by mdijon (# 8520) on
:
I think you misrepresent German healthcare.
quote:
Germany has a universal multi-payer health care system with two main types of health insurance: "Statutory Health Insurance" (Gesetzliche Krankenversicherung) known as sickness funds (Krankenkassen) and "Private Health Insurance" (Private Krankenversicherung).... According to the World Health Organization, Germany's health care system was 77% government-funded and 23% privately funded as of 2004.
Posted by Boogie (# 13538) on
:
quote:
Originally posted by mdijon:
I think you misrepresent German healthcare.
quote:
Germany has a universal multi-payer health care system with two main types of health insurance: "Statutory Health Insurance" (Gesetzliche Krankenversicherung) known as sickness funds (Krankenkassen) and "Private Health Insurance" (Private Krankenversicherung).... According to the World Health Organization, Germany's health care system was 77% government-funded and 23% privately funded as of 2004.
Yes - I should have used the words 'public health insurance' instead of private.
My point is that everyone pays in and it works. It's not taken out of tax or treated like a political football like ours or a complete hotch potch like the USA.
My son, who lives in Heidelberg, had knee trouble. He went to the GP, no waiting. Was sent straight for scans and x-rays then to the consultant and for injections - all in his lunch hour!
He works as a nurse. No overcrowding, no bed shortages and no stressful job. He loves it.
Posted by Patdys (# 9397) on
:
Health Systems
Cheap Cost
Short Waiting Times
Minimal Limitations on what is provided
Pick any two.
It's the best you can do.
Germany is reported as having one of the best health systems in the world. And it is failing on cost from what I am reading.
Australia is a bit between the UK and US systems.
We are blowing out on cost and waiting times.
And there are limitations on what is provided.
But I am proud that all people can access the service.
Posted by Jane R (# 331) on
:
Yes, the German system is a lot more expensive than the NHS. The NHS could be as good if the government threw a lot more money at it, but they can't even bring themselves to lift the pay cap for the staff they've got now...
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Boogie:
He works as a nurse. No overcrowding, no bed shortages and no stressful job. He loves it.
At 11.3% of GDP vs 9.1% of GDP for the UK. Percentages out of GDPs of $3.2T vs $2.3T.
So if the NHS had 60% more funding it would be a good comparison. And that is where the political differences are. Presumably in Germany there is a political consensus to fund health to that level, therefore it isn't a political football. In the UK there are opposing views on the right level of funding.
Posted by quetzalcoatl (# 16740) on
:
Yes, boogie said something about people being 'precious' about the NHS, which I don't get. It works fine with enough money. The Tories will starve it of money, then the right-wing press will say that the NHS isn't working, then some right-wing dork will suggest private insurance.
Posted by Boogie (# 13538) on
:
quote:
Originally posted by quetzalcoatl:
Yes, boogie said something about people being 'precious' about the NHS, which I don't get. It works fine with enough money. The Tories will starve it of money, then the right-wing press will say that the NHS isn't working, then some right-wing dork will suggest private insurance.
I think, if we are keeping the NHS, we should pay a proper tax which is completely ring fenced for the NHS, no political interference.
I would much prefer to move over to the German system, even if it costs a lot - it works. But saying this causes people to think I want to go the American way. Far from it, I think they have the worst of all health provision.
Posted by Boogie (# 13538) on
:
quote:
Originally posted by mdijon:
quote:
Originally posted by Boogie:
He works as a nurse. No overcrowding, no bed shortages and no stressful job. He loves it.
At 11.3% of GDP vs 9.1% of GDP for the UK. Percentages out of GDPs of $3.2T vs $2.3T.
So if the NHS had 60% more funding it would be a good comparison. And that is where the political differences are. Presumably in Germany there is a political consensus to fund health to that level, therefore it isn't a political football. In the UK there are opposing views on the right level of funding.
Exactly.
Posted by quetzalcoatl (# 16740) on
:
quote:
Originally posted by Boogie:
quote:
Originally posted by quetzalcoatl:
Yes, boogie said something about people being 'precious' about the NHS, which I don't get. It works fine with enough money. The Tories will starve it of money, then the right-wing press will say that the NHS isn't working, then some right-wing dork will suggest private insurance.
I think, if we are keeping the NHS, we should pay a proper tax which is completely ring fenced for the NHS, no political interference.
I would much prefer to move over to the German system, even if it costs a lot - it works. But saying this causes people to think I want to go the American way. Far from it, I think they have the worst of all health provision.
I can't follow that. If more money will make the NHS work fine, why move to a different system? And after Blair pumped money in, it did seem to work fine, as far as my experience went. The right wing tend to dislike the NHS, therefore starve it of money.
Posted by Leorning Cniht (# 17564) on
:
quote:
Originally posted by quetzalcoatl:
I can't follow that. If more money will make the NHS work fine, why move to a different system? And after Blair pumped money in, it did seem to work fine, as far as my experience went. The right wing tend to dislike the NHS, therefore starve it of money.
The interesting question, of course, is not "can we make the NHS better with more money?" but "what way of spending our money produces the best results?".
It's completely clear that the American answer is the wrong one, but Boogie points out that Germany has a system that works OK, and there are several other countries with healthcare systems that seem to work OK.
So it's possible that the best answer is just "increase the NHS budget", but if there are things that we could copy from other systems that would make the NHS more efficient, why wouldn't we look at that?
Maybe you look at other systems, and decide that they don't have anything useful to offer.
Posted by quetzalcoatl (# 16740) on
:
quote:
Originally posted by Leorning Cniht:
quote:
Originally posted by quetzalcoatl:
I can't follow that. If more money will make the NHS work fine, why move to a different system? And after Blair pumped money in, it did seem to work fine, as far as my experience went. The right wing tend to dislike the NHS, therefore starve it of money.
The interesting question, of course, is not "can we make the NHS better with more money?" but "what way of spending our money produces the best results?".
It's completely clear that the American answer is the wrong one, but Boogie points out that Germany has a system that works OK, and there are several other countries with healthcare systems that seem to work OK.
So it's possible that the best answer is just "increase the NHS budget", but if there are things that we could copy from other systems that would make the NHS more efficient, why wouldn't we look at that?
Maybe you look at other systems, and decide that they don't have anything useful to offer.
It gets complicated when other systems spend more on health. So first, you have to strip that out, and then compare various aspects of health. I don't think that efficiency is the only factor, by the way. It would be efficient to let certain people just die, wouldn't it, and not bother with care for them?
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Leorning Cniht:
but Boogie points out that Germany has a system that works OK
It works OK with 60% more money. So difficult to say that the system makes it better. I've no doubt that efficiency can be improved in the NHS, but the German system wholesale isn't necessarily going to do that. It is just as likely that Germany is worse in terms of system, but funded enough to get over that.
Also when a system is struggling just to stay alive it is harder for people to be reflective and work out what to do better.
Posted by Jane R (# 331) on
:
It's not just a question of throwing more money at the problem; it's also important to spend it wisely. Scotland, for example, has reorganised the way healthcare is delivered (by getting agencies to work together more effectively). They won't be able to go on doing it if they're starved of funds, though.
And there is no slack in our system at all. I expect that's why Boogie's son was able to get his bad knee sorted out so quickly; the German system presumably has extra capacity built-in. They don't have to leave patients on trolleys in the corridor every time there's a slight uptick in the number of people coming into A&E. Meanwhile, in the NHS, staff are being run off their feet because they're all trying to do at least one and a half jobs.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Jane R:
And there is no slack in our system at all. I expect that's why Boogie's son was able to get his bad knee sorted out so quickly; the German system presumably has extra capacity built-in.
Germany has 9 acute beds per 1000 population. The UK has 3.
Posted by Jane R (# 331) on
:
Well, there you go then.
Posted by Ricardus (# 8757) on
:
ISTM that after a certain point, any organisation that is financially well run will give less value for money if more money is given to it and that is proof that it is well run.
In crude terms, say you are the finance manager of a hospital and you are presented with three proposals. All of them cost 1 million ducats but the first will save a hundred thousand lives, the second fifty thousand lives, and the third ten thousand lives. If you are financially prudent you will purchase the first option. If more money becomes available then you may decide to purchase the second one as well. As soon as you do so, you have caused the amount the hospital spends per life saved to increase - but you have also acted with financial prudence.
IOW, all these right-wing journalists who say Mr Blair's health spending increases didn't give good value for money, even if they are correct, are very likely to be missing the point.
Posted by quetzalcoatl (# 16740) on
:
It's said that the British, or maybe I mean the English, are inordinately fond of low taxes, and are therefore prepared to put up with poor services, including poor health care.
I don't know whether this is true or not, but the austerity agenda presumably relied on it. And the recent election is being interpreted as showing an increasing exasperation about it. But this also involves low wages as well. I suppose Labour trade partly on the idea of better services and higher taxes and higher pay.
Posted by Golden Key (# 1468) on
:
Soror Magna--
quote:
Originally posted by Soror Magna:
quote:
Originally posted by Golden Key:
...--We know that health insurance is hard to get and keep. And confusing as all get out.
--We know horror stories--heck, they feature on both the news and in TV medical dramas.
--We know that people face terrible choices, especially about sick kids.
--We know that, even if we're lucky enough to have insurance, we may not be able to afford the deductible and co-pays.
--We know that we may not be able to get medical care at all.
--We know that, even if we have insurance and can afford our bit, we may not have paid time off from work for appointments or sick days.
--We know, for a fact, that insurance companies will do everything they can to avoid paying--thanks to a whistle-blower who spoke before Congress, some years back. ...
It's one thing to think "Wow, the Yanks desperately need a health care system that works", and another to think "...and they're too stupid to know that, and too lethargic to do anything about it".
Yep, private health insurance really sucks, doesn't it? So why stick with it? Millions of ordinary folks in the USA are already getting care through government and non-profit insurance programs. (They're the ones holding the signs that say, 'Keep government out of Medicare'.) Why not everybody? If it isn't lethargy or stupidity, it's whatever the word is for "I would rather be fucked over by a corporation than be served by my government because FREEDOM!"
Um, did you miss the bit you snipped out?
quote:
But, given that various powers that be (PTB)--insurance industry, medical industry, big pharma, and everyone in their pockets--fight tooth and nail to keep us from having affordable health care, let alone *universal*; insist on demolishing Obama's imperfect attempt; and want to pretty much demolish Medicare and Medicaid...what do you expect us to do differently, that might actually work, become law, and *stay* law?
We've been trying to get health care since at least the mid 1800s, per "History of health care reform in the United States" (Wikipedia).
I happen to be on both Medicare and Medicaid (Medi-Cal, in California). I'm extremely grateful to have them. FYI, Medi-Cal pays very little to vendors (docs, etc.), and it's hard to get them to do it. Many docs won't take Medi-Cal patients. Some, like at least one of mine, will only take a Medi-Cal patient if the person also has Medicare. And we periodically lose certain Medi-Cal benefits. (E.g., most dental coverage may be cut, then restored a few years later.)
I'd be happy if everyone were put on Medicare. (Or on the Congressional health plan, as has occasionally been suggested in the media and to Congress.) Medicare doesn't cover everything, though, and doesn't pay the full, agreed-upon cost for what it does cover. So there are co-pays, which means members paying out of their own pockets, or getting Medicare Advantage plans to cover the difference, or getting Medicaid.
Both corporations and all levels of gov't (pardon my language) screw us over. To paraphrase G.K. Chesterton, it's not that universal health care in America has been tried and found wanting, or that nobody bothered; it's that we've tried and we've fought for it, and the powers that be keep taking it away.
Please don't assume that you understand the situation.
Oh, and per that Wikipedia article, it was the American Medical Association (AMA) that termed it "socialized medicine", in the early 1900s--and fought against it. (See also "Socialized Medicine" (Wikipedia), which is about the American usage of the term.)
[ 06. July 2017, 07:37: Message edited by: Golden Key ]
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Golden Key:
Oh, and per that Wikipedia article, it was the American Medical Association (AMA) that termed it "socialized medicine", in the early 1900s--and fought against it.
And in the UK the British Medical Association at one point voted against joining the newly-proposed NHS, although they did eventually get on board.
quote:
If medicine were taken over by the state, it would be as disastrous as was the domination by the Church in the Middle Ages; a greater disaster, because the Church was cultured."
quote:
the work of a complete and uncontrolled dictator, with quisling doctors to help him
quote:
a nationalised health service is the first step, and a big one, towards national socialism with the government as medical Führer
Sounds familiar? These were British doctors talking about the creation of the NHS.
Posted by Jane R (# 331) on
:
There was a lot of opposition to the NHS too when it was founded. The richer GPs and Harley Street specialists were worried about their income and used their clout to get extremely favourable terms for doing NHS work. That's why GPs all earn shedloads of money (compared to nurses) and senior consultants only work part-time for the NHS and can see private patients all the rest of the week.
And we still have a private health service, it's just that the average person never uses it because it's not worth paying all that extra money if the NHS can do the job instead. The super-rich can still get their private hospital rooms and personal physicians.
[x-posted with mdijon]
[ 06. July 2017, 07:56: Message edited by: Jane R ]
Posted by Baptist Trainfan (# 15128) on
:
Some of you may recall A J Cronin's novel "The Citadel" which was a stinging - if a bit over-wrought - criticism of the private health care that existed in the 20s and 30s. It's a long way from the genteel world of Dr. Finlay and Tannochbrae!
Posted by mdijon (# 8520) on
:
Back to poor old Charlie this is really unhelpful. Offers to transfer him to the Vatican city? What are they thinking?
After they allowed the last pope to die I thought the tyranny of never accepting death was over.
The sheer cruelty of a family struggling to cope with the end of life of their child played out amid geopolitics and the head of the RCC is really striking. I feel very moved by much of what Pope Francis has done, but I think he's got this one badly wrong. It's an end-of-life media circus for a baby.
Posted by Jane R (# 331) on
:
Well, the Pope and the American President are 'traditional men who believe in the family.' That's nice. For them. Not so nice for poor Charlie, turned into a political football. WTF does the Pope think the hospital at Vatican City can do for him that Great Ormond Street can't?
Surely, if Charlie has been baptised, he is safe in the hand of God whatever happens to his physical body. The Pope's spiritual authority would be better employed helping the Gards to understand this.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Jane R:
Well, the Pope and the American President are 'traditional men who believe in the family.'
Like the problem with the Ormond Street docs and nurses is that they don't believe in the family enough to save Charlie. But in fairness that's the quote of a grieving and desperate mother.
The only saving grace about grief is the moment that you let go of desperation, and the only saving grace of desperation is that it defends you from grief. The moments where denial allows both grief and desperation to intersect is pretty brutal.
Posted by Jane R (# 331) on
:
mdijon: quote:
But in fairness that's the quote of a grieving and desperate mother.
True. ![[Votive]](graemlins/votive.gif)
Posted by Soror Magna (# 9881) on
:
quote:
Originally posted by Golden Key:
...
Both corporations and all levels of gov't (pardon my language) screw us over. To paraphrase G.K. Chesterton, it's not that universal health care in America has been tried and found wanting, or that nobody bothered; it's that we've tried and we've fought for it, and the powers that be keep taking it away.
...
So why do you think the citizens of the USA have failed where every other developed country has had some measure of success? It's not like the citizens of other capitalist democracies didn't face the same obstacles. Where's the Spirit of '76? Where's the Yankee ingenuity? Don't y'all have lotsa guns to stop a tyrannical government?
Posted by Brenda Clough (# 18061) on
:
If we could agree, we would prevail. We don't agree. A substantial fraction of the population is being lied to (they don't call it Faux News for nothing) and until they quit swallowing the lie we can't have nice things.
Posted by Soror Magna (# 9881) on
:
Sorry, that came out way snarkier than I meant. I'm incoherent from incomprehension. Both houses of Congress have passed legislation that has less than 20% public support (and that's probably generous). Trump will autograph any smooth surface he is presented with. If Wealthcare goes through, historians will look back on that as the moment the republic finally collapsed. That's how serious this is, as if the life and health of every American wasn't serious enough.
Posted by cliffdweller (# 13338) on
:
quote:
Originally posted by Soror Magna:
Sorry, that came out way snarkier than I meant. I'm incoherent from incomprehension. Both houses of Congress have passed legislation that has less than 20% public support (and that's probably generous). Trump will autograph any smooth surface he is presented with. If Wealthcare goes through, historians will look back on that as the moment the republic finally collapsed. That's how serious this is, as if the life and health of every American wasn't serious enough.
I'm with you. Faught with helpless worry. Over All The Things.
![[Hot and Hormonal]](icon_redface.gif)
Posted by Brenda Clough (# 18061) on
:
The only thing we can do is not suffer in silence. Mail a letter to your congressperson or senator. If they are fighting this legislation, assure them of your support; if they are pushing it promise to vote against them. You could repeat this in email (if they are taking emails), by fax (if they have not unplugged the fax machine) or in person (if you can find them). It is always possible to go to your local office and express yourself to a weary staffer. I have done this, and was smart enough to sweeten the visit with cookies, but I live in a deep blue district.
Posted by Doublethink. (# 1984) on
:
quote:
Originally posted by mdijon:
Back to poor old Charlie this is really unhelpful. Offers to transfer him to the Vatican city? What are they thinking?
After they allowed the last pope to die I thought the tyranny of never accepting death was over.
The sheer cruelty of a family struggling to cope with the end of life of their child played out amid geopolitics and the head of the RCC is really striking. I feel very moved by much of what Pope Francis has done, but I think he's got this one badly wrong. It's an end-of-life media circus for a baby.
The family contacted the hospital I believe, making the request.
(From the 5/7/17 BBC News article: "The hospital's president Mariella Enoc said: "I was contacted by the mother, who is a very determined and decisive person and doesn't want to be stopped by anything.")
[ 06. July 2017, 18:42: Message edited by: Doublethink. ]
Posted by Meconopsis (# 18146) on
:
Lots of references from U.K. folks about American media & their acceptance of the current system of health-care delivery here in the U.S.
I would not be surprised if "American Organized Insurance" did their best to see that media-employees (especially journalists) receive excellent health insurance.
That would be worth a research project, I think.
Posted by Meconopsis (# 18146) on
:
Soror Magna: quote:
"Wealthcare"
LOL; that just about nails it.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Doublethink.:
The family contacted the hospital I believe, making the request.
(From the 5/7/17 BBC News article: "The hospital's president Mariella Enoc said: "I was contacted by the mother, who is a very determined and decisive person and doesn't want to be stopped by anything.")
The thing to do would have been to compassionately explain that they could not offer any medical care not available in Great Ormond Street. Not take to make offers implying they could do something that would go to sound bites.
Posted by Doublethink. (# 1984) on
:
I agree.
Posted by stonespring (# 15530) on
:
I'm very late to this thread, but does anyone know what the laws would be in comparable situation in the US? If it varies based on the state, what would the laws be like in the states you know about? I haven't heard of a case in the US where a hospital sought and obtained court approval to remove a baby from life support against the parents' wishes or refused the parents' requests to move the baby to another hospital where the baby could receive experimental treatment when the parents were fully able to pay the cost of transportation and treatment - assuming that the baby could be transported without the transportation itself being an undue risk to the baby's life, but I am not very knowledgeable in such matters. There seems to be some big legal difference between the US and the U.K. here aside from the huge inequities of the US healthcare system, but I'm not knowledgeable enough to explain it.
I tend to think of myself as liberal on dead horse issues but this case and others like it makes me very unsure of where to stand. I'm not sure if the parents or the medical experts should have the final say.
Posted by Ricardus (# 8757) on
:
quote:
Originally posted by stonespring:
I'm not sure if the parents or the medical experts should have the final say.
Put in those terms I don't see how the answer can be anything other than 'the medical experts', to be honest. Anything else is like saying parental choice includes the right to choose their own gravitational constant.
If the medical consensus is that further treatment will make Charlie's life worse, then the right that the parents are asserting is the right to live in a different universe.
Of course the medical consensus may not be right, and to be fair I think that is what Charlie's parents are claiming. But when you go down that route you are no longer arguing about parents' rights versus medical experts, but rather about the relative merits of different sources of medical expertise.
Posted by Sarasa (# 12271) on
:
Charlie Gard was the lead story on the BBC News this evening. It seems like Great Ormond Street have gone back to the High Court in the light of a letter from experts about the experimental treatment.There was an interview with the mother and I think she seems (as I think I would in the same case) to be expecting such treatment to work a miracle. She also claimed that her son wasn't in pain while the hospiital says he is. I don't know if there is any objectve way of telling
Posted by stonespring (# 15530) on
:
quote:
Originally posted by Ricardus:
[QUOTE]
If the medical consensus is that further treatment will make Charlie's life worse, then the right that the parents are asserting is the right to live in a different universe.
Is keeping Charlie on life support what is meant by "further treatment"? If so, then the hospital is basically saying that dying now is not only preferable to keeping Charlie on life support and thereby subjecting him to more pain until a death that will come anyway, but that causing Charlie's death now, even when Charlie's parents disagree, is in Charlie's best interest. I may have the facts of the case wrong, so please correct me if I do. But it seems that the hospital is saying that it is in Charlie's best interests to have what is keeping him alive taken away rather than continue to live a life of suffering with no hope of a cure. It is the irreversibility of death, our lack of knowledge of what, if anything, comes after it, and our similar lack of knowledge of what exactly is going on inside Charlie's mind that all make me very wary of allowing a hospital to overrule the parents in such a case. There are probably loads of other cases in which it would be clear that the parents' wishes are harmful (such as parents' whose religious beliefs cause them to reject treatment for a child with cancer) and where medical experts should be allowed to overrule the parents. That's why I am asking about what the laws are here in the US (or in individual states), if anyone knows.
Moving Charlie to the US to undergo experimental treatment is a separate issue, which I am also conflicted about. And I know the hospital is in no rush to pull the plug on Charlie, and they have said so. But I don't see a clear cut case making it obvious that causing Charlie's death by removing life support is the only ethical thing to do - or that doing so would not be unethical when Charlie's parents are against it.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by stonespring:
It is the irreversibility of death, our lack of knowledge of what, if anything, comes after it,
Irrelevant. Kept alive, he has no life and probable pain. If he dies, that ends. Whether it is to nothingness or God's arms, why would prolonged suffering here be a good thing?
quote:
and our similar lack of knowledge of what exactly is going on inside Charlie's mind
The variant of the condition that he has causes brain damage. Nothing will reverse this. What is going through his mind is pain, he just cannot express it.
And the treatment suggested has not been tested on anything not even mice.
To the idea of palliative care to the end of his life as has been ofered, why?
Posted by Boogie (# 13538) on
:
Nobody would be causing his death, they would be allowing his death.
Surely brain scans would show if he's in pain? If he is in pain and has no chance of any life other than that of a brain dead machine then the kindest thing will be to let him go.
Posted by Jane R (# 331) on
:
Brain scans on babies as young as Charlie are very rare, IIRC (Mdijon will correct me if I'm wrong), so they probably don't have much data from neurotypical babies to compare him with. And if he has extensive brain damage it might not be possible to interpret the scans anyway.
Posted by mdijon (# 8520) on
:
Yes, sadly brain scans don't have any validated way of determining if someone is in pain, and especially not in young babies.
One could speculate on the basis of the degree of damage seen on a brain scan whether it was possible to feel pain, but that doesn't add a lot to the information one already has in dealing with a baby who doesn't seem to be responding to anything.
These are really difficult decisions, one really needs parents to understand and engage to support the decision making, which of course has broken down here, and the media circus must be making it totally impossible to have a sensible discussion.
Posted by Jane R (# 331) on
:
The thing about brain scans is, they can't actually tell you what someone is thinking. All they can tell you is which parts of the brain are active. If you want to be sure of what someone is thinking you have to ask them, which is impossible in this case.
(and you can't even be sure if you ask... people lie).
[ 08. July 2017, 09:44: Message edited by: Jane R ]
Posted by Twilight (# 2832) on
:
quote:
Originally posted by Boogie:
Nobody would be causing his death, they would be allowing his death.
That's such an important point and one people keep forgetting where someone is on long term life-support.
It bothers me that the Pope, leader of the church that frowns on birth control because it "interferes with the will of God," is all for forcing an infant to stay alive long after God has called him home.
Posted by Leorning Cniht (# 17564) on
:
quote:
Originally posted by stonespring:
I'm very late to this thread, but does anyone know what the laws would be in comparable situation in the US?
Jahi McMath?
Posted by L'organist (# 17338) on
:
posted by Twilight quote:
It bothers me that the Pope, leader of the church that frowns on birth control because it "interferes with the will of God," is all for forcing an infant to stay alive long after God has called him home.
But this is nothing new.
The RC church has been employing a pick-and-mix attitude to advances in science for centuries, and the other churches too, though with less fanfare.
Contraception: "articifial" is labelled as interfering with God's will, but any couple who manage to play successfully the vatican-approved russian roulette rhythm method aren't.
Penicillin to treat infection is OK but wearing a condom to prevent infection in the first place is wrong.
IVF and other forms of fertility treatment are wrong but transplant surgery is OK.
But then this is the institution which canonised Mother Teresa, a woman who took in the sick and gave them paracetamol (if they were lucky) when the government hospital down the road would have treated them and enabled them in many cases to return to a useful, productive life.
Posted by Gee D (# 13815) on
:
quote:
Originally posted by Twilight:
It bothers me that the Pope, leader of the church that frowns on birth control because it "interferes with the will of God," is all for forcing an infant to stay alive long after God has called him home.
I'm not sure that that's what the Pope has in fact said. AFAICS, his only statement - as reported in The Guardian - has been:
In a statement on Sunday evening, the Vatican said the pope was following the case of the 10-month-old, who has a form of mitochondrial disease, “with affection and sadness” and was close to his parents: “For this he prays that their wish to accompany and treat their child until the end isn’t neglected.”
Now, minds may differ, but that does not seem to be a call to force poor little Charlie to be kept alive.
Posted by mdijon (# 8520) on
:
John Paul II died at home in his apartment rather than with maximal hospital care. He was quoted as saying "Allow me to depart to the house of the Father".
Posted by Gee D (# 13815) on
:
Standard Catholic practice here is much the same - Clough's dictum applies.
Posted by mdijon (# 8520) on
:
Reading the context of the full poem I think Clough was being sarcastic when he talked of officiously striving to keep alive being not a sin. Ironic that it has become such a slogan for the acceptability of allowing nature to take it's course.
Of course when he was writing there was no intensive care.
Posted by Gee D (# 13815) on
:
quote:
Originally posted by mdijon:
Reading the context of the full poem I think Clough was being sarcastic when he talked of officiously striving to keep alive being not a sin. Ironic that it has become such a slogan for the acceptability of allowing nature to take it's course.
Of course when he was writing there was no intensive care.
I don't think sarcastic is quite the right word, but your second sentence is headed in the wrong direction. Many read the 'Officiously" to qualify "strive"; I'd strongly argue that it belongs with "to keep alive". Don't poke your nose into something which is really not your business.
You're right, there was no intensive care then, at least as we know it, and no life support systems either. What needs to be recognised is that a time comes when life support has not worked and there is no known solution. Clough would say that that's the stage where any further attempts to maintain life become officious.
[ 10. July 2017, 12:53: Message edited by: Gee D ]
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Gee D:
Clough would say that that's the stage where any further attempts to maintain life become officious.
I think that's what people who quote the phrase mean by it, and I often use it myself in that way.
But looking at the rest of the poem, for instance the lines quote:
Thou shalt not steal; an empty feat,
When 'tis so lucrative to cheat:
I don't think we would interpret that as suggesting cheating is OK. It is suggesting that there is hypocrisy in cheating while apparently eschewing stealing. Likewise I suspect the line about not officiously striving to keep alive is being contrasted with murder to imply similar hypocrisy.
I don't agree with this by the way, but that's what I think the original poem was saying.
Posted by Jane R (# 331) on
:
mdijon: quote:
Likewise I suspect the line about not officiously striving to keep alive is being contrasted with murder to imply similar hypocrisy.
As you say, intensive care did not exist when the poem was written so whatever the poet's intention may have been he can't have been talking about that.
I suspect he was talking about the hypocrisy of not murdering people directly, but instead creating conditions where they die prematurely and/or unnecessarily. Slum landlords are not a modern invention (to take just one example). Or he might have been thinking of the story of the Good Samaritan.
Posted by Brenda Clough (# 18061) on
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My husband's surname (from which I get it) is so relatively rare that it's always a surprise to read of someone else who has it.
Posted by Bishops Finger (# 5430) on
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Ah, but it's common enough over this side of the Pond!
From Wikipedia (and therefore True):
Last name: Clough. Recorded as Clew, Clow, Clowe, Clough, Cluff, Cloghe, Clougher (England), Cleugh and Cleugher (Scotland) and in Devonshire, South West England, Cloke, Cloak, Cloake, and Clooke, this is an English surname of ancient origins.
IJ
Posted by PaulTH* (# 320) on
:
I can only try to imagine the anguish and sense of helplessness which must be afflicting Charlie's parents right now. Only someone who had been through something similar, which I haven't, could be qualified to give a serious opinion on their desperate and tortured pleas to help their child. Yet the doctors at Gt Ormond St Hospital, acknowledged as some of the best in the world are unlikely to be wrong about Charlie's condition. And the judges know this well.
The so called experimental treatment which Charlie has been offered, has improved brain function in some children, but none of them had the condition Charlie suffers from, nor did they have his atrophied brain which hasn't grown for three months. It might be quite tempting for the judge, given that there's a baying mob outside his courtroom acting as if he holds Charlie's life in his hands, to kick it into the long grass by allowing him to be taken to America and out of his hands, but it would be wrong and irresponsible. The money to fund his treatment is already available, and with President Trump and the Pope weighing in, he'll get it free anyway.
But this misses the point that his condition is incurable and it's touch and go whether he could even survive the journey. At the risk of arousing anger in those who disagree, I hope the judge upholds the opinion of the Great Ormond St experts and lets Charlie die with peace and dignity. He will have a better time enwrapped in God's loving embrace.
Posted by PaulTH* (# 320) on
:
quote:
Originally posted by Brenda Clough:
My husband's surname (from which I get it) is so relatively rare that it's always a surprise to read of someone else who has it.
As Bishop's Finger has pointed out, Clough is a good old English name. It comes mainly from Yorkshire and Lancashire and means ravine or precipitous slope. So if your husband has inherited this name down the line, he's likely descended from someone who lived near a raving in Yorkshire, although there are many ways of acquiring a surname. It's also sometimes part of compound names such as Fairclough meaning beautiful ravine, or Barraclough meaning wooded ravine.
Posted by quetzalcoatl (# 16740) on
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The baying mob that PaulTH referred to, could be seen briefly on the TV news, and I felt horrified by them. What on earth are they doing, creating a media circus over a little boy dying? And I add to that everyone who inflates this, of course, Trump and the Pope. I believe the right wing in the US are portraying the NHS as some kind of Nazi death cult. What shameful exhibitionism.
Posted by stonespring (# 15530) on
:
I'm not sure if these developments mean much - looks like nothing is likely to change for the moment.
http://www.bbc.com/news/uk-england-london-40552026
I don't necessarily agree with this doctor, and he hasn't evaluated Charlie personally so maybe it's not his place to offer his opinion, but I think what he has to say is interesting:
https://www.nytimes.com/2017/07/06/opinion/let-charlie-gards-parents-decide-his-fate.html?smprod=nytcore-iphone&smid=nytcore- iphone-share
I'm not sure what "dying with dignity" means for a baby. I think that, for those who are arguing in support of the hospital's decision, preventing future suffering is more persuasive. He has no notion of autonomy or any of the other things that make people with chronic debilitating illness want to end their lives. I would think that like most animal I can think of, if there is any sense of motivation in his damaged brain (that becomes more damaged as time passes), it would be to survive, but I am speculating where I am extremely ignorant. It is true that some wounded, ill, or elderly animals start refusing food and isolating themselves as if they were preparing themselves for death. I do not know if Charlie, if he were able to move on his own, would do the same.
I am terrified by any arguments for euthanasia when the patient is not able to speak for him/herself or has not signed a document in advance indicating his/her wishes (or when the reason for wishing to end one's life is mental illness). I think that just as anti-abortion and anti-euthanasia/anti-assisted suicide activists, conservative religious leaders, right-wing media, and right-wing populist politicians are using Charlie to promote their own agendas, pro-euthanasia/assisted suicide activists, pro-abortion rights activists, some (not all) anticlerical secularists, left-wing media (I'm referring to clickbait, not respected news sources), and perhaps some politicians (although I haven't heard of any) are also using Charlie to promote their own agendas. A lot of the people who are worried about Charlie's suffering or dignity are thinking of themselves in a similar situation where they could not move or communicate and were in increasing pain and disability - but they can't compare themselves, who have lived a life, had all kinds of memories and complex thoughts, and developed a sense of the importance of being independent and having agency - all of which I do not think one can project onto an infant with no use of language, very limited sensory input and brain damage.
I confess to being a fence sitter and perhaps that is irresponsible. It's not my decision to make regarding anything in this specific case, although as a voter I have a say on the laws about such cases in my own jurisdiction. I don't like the idea of deciding that an infant's life isn't worth living and is more cruel than causing his death. However, I think that the extraordinary measures taken to sustain human life when death is certain and suffering is great is a somewhat baffling example of human exceptionalism given the cruelty humans constantly show to animals of relatively advanced mental development, arguably more advanced mental development than very young children, people with severe irreversible brain damage, and people with severe irreversible dementia. I'm not advocating for euthanasia of any kind but rather for more humane treatment of animals - but I eat meat so I'm a huge hypocrite anyway (perhaps the fact that I am being treated for an eating disorder gives me somewhat of an excuse to avoid making huge changes to my diet for the time being. I'd like to stop eating most meat one day, if it doesn't cause too much inconvenience to my family).
Lastly, I think it is ridiculous to argue that, once any person has been put on life support, that removing that life support is not causing his/her death. Stephen Hawking (and Christopher Reeve, while he was alive) need/needed all kinds of daily interventions in order to remain healthy and alive, and no one would argue that denying either of them those interventions would not be deliberately causing them physical harm, if not causing their death. Even if killing someone who is suffering IS the moral thing to do, it is still killing someone. Let's not euphemize the situation.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Jane R:
Slum landlords are not a modern invention (to take just one example). Or he might have been thinking of the story of the Good Samaritan.
You're right, there's no particular reason to read the original poem as referring to medicine. I've always heard those lines quoted in that context, so I read that assumption back in.
Posted by mdijon (# 8520) on
:
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.
quote:
Originally posted by stonespring:
Lastly, I think it is ridiculous to argue that, once any person has been put on life support, that removing that life support is not causing his/her death.
The thing is that life support is not a single box that gets attached and then removed once as two single actions.
There is a ventilator with a tube into the lungs. The settings need adjusting for various deteriorations that might occur, the tube may need repositioning, may even fall out. Pneumonia may intervene and need treating.
There will need to be a drip with venous access, and that needs to be replaced. Nutrition needs to be given by an naso-gastric tube. Sometimes the line will get infected and that will need treating.
There is the original act to start doing intensive care, but carrying on with intensive care involves a lot of activity. Often the activity is withdrawn in stages, or ceiling are set to the activity (e.g. we won't ventilate beyond a certain requirement).
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.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by quetzalcoatl:
What on earth are they doing, creating a media circus over a little boy dying?
Something that gets lost in the circus around this one little boy is that similar stories are found in every hospital with intensive care. All over doctors are having difficult conversations with parents about whether they have reached a point where one must accept the inevitable and further treatment is not in the child's best interests.
Why did this one case reach the point of going to the courts and of becoming a media circus? And I wonder what impact it is having on all the other cases around the country - around the world even.
Posted by Boogie (# 13538) on
:
quote:
Originally posted by mdijon:
quote:
Originally posted by quetzalcoatl:
What on earth are they doing, creating a media circus over a little boy dying?
Something that gets lost in the circus around this one little boy is that similar stories are found in every hospital with intensive care. All over doctors are having difficult conversations with parents about whether they have reached a point where one must accept the inevitable and further treatment is not in the child's best interests.
Why did this one case reach the point of going to the courts and of becoming a media circus? And I wonder what impact it is having on all the other cases around the country - around the world even.
This was my thought too. Doctors and families are making decisions about whether to put children on life support/keep them on life support or allow them to die every day of the year. I feel for all doctors who do this job - nothing is ever completely black and white and sometimes they have to make judgement calls. If the family don't agree then what choice do they have but to get the courts involved?
Imagine if every terminally ill child were put on life support 'just in case' a miracle cure could one day maybe available. It'd be a nightmare situation even if the machines were available - which, of course, they are not.
Posted by Enoch (# 14322) on
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quote:
Originally posted by PaulTH*:
quote:
Originally posted by Brenda Clough:
My husband's surname (from which I get it) is so relatively rare that it's always a surprise to read of someone else who has it.
As Bishop's Finger has pointed out, Clough is a good old English name. It comes mainly from Yorkshire and Lancashire and means ravine or precipitous slope. So if your husband has inherited this name down the line, he's likely descended from someone who lived near a ravine in Yorkshire, although there are many ways of acquiring a surname. It's also sometimes part of compound names such as Fairclough meaning beautiful ravine, or Barraclough meaning wooded ravine.
How's it pronounced in the US? If spelt Clough the word is usually pronounced as though spelt 'cluff' here.
I'd disagree slightly as to meaning. I'd take it to mean a small valley that is only open at one end.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Boogie:
If the family don't agree then what choice do they have but to get the courts involved?
To keep talking to the medics. Usually one reaches an understanding eventually. Normally the demand from the family is for more time to assess progress, and usually the medics will give way but keep on explaining what is happening and eventually the family will move on from denial/disagreement to acceptance.
A difference here is that the family are demanding a very specific treatment and/or a transfer somewhere else. That is rather more stark, and if the family are insistent it is done at a particular moment, or remain insistent despite time passing then there is an intractable problem.
One could still deal with that by asking for second or third opinions, and usually families will eventually accept those.
In this case I expect there is something about the approach this particular family have taken which has led to an escalation, and now it has become a media circus with political figures involved it is hard to resolve without the courts.
Posted by Jane R (# 331) on
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It's all reminding me of this case, which has similar points in that the parents wanted a very specific treatment for their child and were prepared to go to extreme lengths to get it. That story did have a happy ending (eventually); I gather Ashya King is still alive and his tumour has gone. However, the issue there was that the treatment the hospital was offering was not acceptable to the parents and the alternative they wanted wasn't available in this country, not that there was no treatment available at all.
Just to reiterate: Charlie is not receiving treatment for his condition. There is no cure; the experimental treatment the Gards want to try has never been used on anyone with such serious brain damage. He is being kept alive by machines (at a significant cost, as mdijon has explained) while lawyers argue over exactly when he will be allowed to die.
Posted by Jane R (# 331) on
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[missed the edit window] Clarification: when I said 'kept alive...at a significant cost' I was of course referring to the cost in pain (if Charlie is able to feel pain now). There is a financial cost, but nobody is really worrying about the money (except, presumably, the Great Ormond Street financial director who will have to explain the hole in his/her budget at the end of the financial year).
And it's been turned into a media circus because:
(a) dying babies sell newspapers (horrible, but true)
(b) it helps to build the case that the NHS should be privatised. Because, look, they let babies die.
(c) it distracts us from other things the government is doing. Look at us all, talking about Charlie Gard instead of kicking up a stink about the actions of the most wilfully stupid and incompetent government in my lifetime. Misdirection, the key to pulling off a successful magic trick.
Posted by mdijon (# 8520) on
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There's a very interesting report on what went wrong. A breakdown in relationships between parents and hospital is likely at the heart of many of these.
In Ashya King's case it is worth noting that once subjected to clinical trials the experimental treatment (Proton beam) turns out to have a similar survival chance as conventional treatment, but is now adopted by the NHS as it has fewer side effects including less hearing loss.
This is the sort of thing that becomes very hard to know if experimental treatments go straight to being available to whoever wants them rather than assessed as a trial intervention.
Posted by Baptist Trainfan (# 15128) on
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quote:
Originally posted by Jane R:
Clarification: when I said 'kept alive...at a significant cost' I was of course referring to the cost in pain (if Charlie is able to feel pain now). There is a financial cost, but nobody is really worrying about the money (except, presumably, the Great Ormond Street financial director who will have to explain the hole in his/her budget at the end of the financial year).
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. Call it bed-blocking if you wish, though I dislike the term.
Posted by Baptist Trainfan (# 15128) on
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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.
Posted by Jane R (# 331) on
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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).
Posted by quetzalcoatl (# 16740) on
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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.
Posted by Baptist Trainfan (# 15128) on
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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.
Posted by Jane R (# 331) on
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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.
Posted by quetzalcoatl (# 16740) on
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Another aim: to attack the NHS.
Posted by Doublethink. (# 1984) on
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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.
Posted by Jane R (# 331) on
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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.
Posted by Eirenist (# 13343) on
:
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?
Posted by lilBuddha (# 14333) on
:
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 ]
Posted by la vie en rouge (# 10688) on
:
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.
Posted by quetzalcoatl (# 16740) on
:
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
Posted by Jane R (# 331) on
:
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]](frown.gif)
Posted by Leorning Cniht (# 17564) on
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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.
Posted by stonespring (# 15530) on
:
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.
Posted by Patdys (# 9397) on
:
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 ]
Posted by mdijon (# 8520) on
:
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?
Posted by Ricardus (# 8757) on
:
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!
Posted by mdijon (# 8520) on
:
I doubt it is an essential requirement scored out of 10 on their recruiting panelists template, but probably does come into the desirable section.
Posted by Patdys (# 9397) on
:
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.
Posted by Golden Key (# 1468) on
:
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.
Posted by Baptist Trainfan (# 15128) on
:
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.
Posted by mdijon (# 8520) on
:
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?
Posted by la vie en rouge (# 10688) on
:
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.
Posted by Baptist Trainfan (# 15128) on
:
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 ]
Posted by Jane R (# 331) on
:
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.
Posted by Patdys (# 9397) on
:
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.
Posted by Martin60 (# 368) on
:
The pond difference here is remarkably and fascinatingly 100% consistently stark.
Posted by Golden Key (# 1468) on
:
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.
Posted by chris stiles (# 12641) on
:
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.
Posted by Gee D (# 13815) on
:
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).
Posted by Golden Key (# 1468) on
:
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.
Posted by Doublethink. (# 1984) on
:
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.
Posted by quetzalcoatl (# 16740) on
:
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.
Posted by Mere Nick (# 11827) on
:
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.
Posted by Leorning Cniht (# 17564) on
:
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.
Posted by Doublethink. (# 1984) on
:
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
Posted by Eirenist (# 13343) on
:
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.
Posted by Golden Key (# 1468) on
:
LC--
Yes, it was Jahi. Thanks! ![[Smile]](smile.gif)
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.
Posted by mdijon (# 8520) on
:
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.
Posted by Golden Key (# 1468) on
:
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.
Posted by mdijon (# 8520) on
:
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.
Posted by Golden Key (# 1468) on
:
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"??
Posted by mdijon (# 8520) on
:
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 ]
Posted by Patdys (# 9397) on
:
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.
Posted by Doublethink. (# 1984) on
:
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.
Posted by mr cheesy (# 3330) on
:
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.
Posted by mr cheesy (# 3330) on
:
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.
Posted by Jane R (# 331) on
:
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.'
Posted by BroJames (# 9636) on
:
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.
Posted by Golden Key (# 1468) on
:
mr cheesy--
Re Limbaugh's site being "a little weird":
You probably don't know this, living elsewhere. But Limbaugh has a long record of being an alt-Right wacko. And that's the flavor of "journalism" he does. FYI.
Posted by mr cheesy (# 3330) on
:
quote:
Originally posted by Golden Key:
mr cheesy--
Re Limbaugh's site being "a little weird":
You probably don't know this, living elsewhere. But Limbaugh has a long record of being an alt-Right wacko. And that's the flavor of "journalism" he does. FYI.
I am well aware of who Limbaugh is, and I'm sure the vast majority of readers of this thread.
The point I was making was that the original post was to a news source which looked like it might be unreliable. I then checked Limbaugh's own site and found the transcript.
The state and trust of Limbaugh's journalism is irrelevant to the point that he interviewed Pence and that these things were said. That's the only reason I linked to his website.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Doublethink.:
There is clearly a public confusion about what death means
There is legal confusion as well. Definitions of brain death vary. Unfortunately we need one to support current medical practice and to help with legal and ethical dilemmas, so saying it can't be defined isn't an option.
It is perfectly possible to have a dead brain stem which meets all the legal definitions without a consequence for the rest of the body in terms of hormone production. Even where there is a consequence, this could be dealt with by a bit of thyroid hormone and steroids.
Unfortunately I don't think there's any neat way of defining life being independent of technology, otherwise where does that leave people on dialysis or who have a bit of oxygen overnight to keep them going?
Posted by L'organist (# 17338) on
:
One of the most disturbing aspects of the Charlie Gard affair is the way that the Gard family seem to have been (willingly) taken over by US right-to-life activists. Bearing in mind the domestic US agenda of these people, that is very troubling.
AUL (Americans United for Life) are the most visible of these people. If you go to their website, the top item on their HOME page is about Charlie Gard. Later their CEO, Catherine Glenn Foster, is quoted thus: quote:
Back in the United States, I got to know Charlie’s mother, Connie, over the phone and via email. When she asked me to come to London to advocate for her family, as they face a life and death struggle, I knew that Charlie stood a better chance with our help. White House officials called me to ask for a meeting to brief us on their efforts, and I flew out from Washington, D.C. that night,” Foster said. “As a mother, I have come to stand with Charlie’s mother, to appeal to those in leadership to allow the family a choice for life"
Quite apart from anything else, it would seem that the White House is actively encouraging these people.
Over here, Channel 4 News is doing its best to point up the hidden agenda of these people: in an interview with them Foster admitted she was not a doctor or medically trained in any way but then went on to say she had "studied" Charlie Gard's ECGs and MRI scans and that allowing 'treatment' in the US would "bring hope to the world".
This campaign is being run on pure emotion and hype. While it is not only understandable but even forgiveable that Chris Gard and Connie Yates are, effectively, saying that they know more than the staff of the most famous children's hospital in the world, for someone like Foster to do so is hubris of mammoth proportions.
As for the notion that the state or doctors can sometimes know better than parents what is best for their child and should therefore be empowered to reach decision in the child's best interests, why are we all forgetting the obvious? Doctors in this country - and I suspect the US - are allowed to make such decisions every day in relation to the children of Jehovah's Witnesses or in protecting girls from being forced to undergo FGM.
AUL, Fr Peter Mahoney and all the other dubious hangers-on in the media circus around Chris Gard and Connie Yates should be ashamed of themselves; their time would be better spent trying to persuade Charlie's parents that sometimes there really is nothing that can be done. Life can be cruel and unfair.
[ 13. July 2017, 12:12: Message edited by: L'organist ]
Posted by Bishops Finger (# 5430) on
:
Ms. Yates and Mr. Gard are now arguing with the medics about the size of Carlie's skull, maintaining that (despite what the medics say), it has grown, and therefore (AIUI) shows that Charlie's brain is active:
http://www.bbc.co.uk/news/uk-england-london-40593286
How much more tragic and absurd can this case become?
![[Disappointed]](graemlins/disappointed.gif)
IJ
Posted by mr cheesy (# 3330) on
:
quote:
Originally posted by Bishops Finger:
How much more tragic and absurd can this case become?
IJ
Oh it'd get more absurd if the child was kidnapped, flown to the USA and then recovered.
If that happens, we might as well all hand in our morals, stick our heads between our knees and await Armageddon.
Posted by Bishops Finger (# 5430) on
:
Sounds like direct intervention by Trump....
Seriously, though, it is all a terrible mess, and Charlie's poor parents seem to have managed to hitch a lift on the tiger's back...
IJ
Posted by Doublethink. (# 1984) on
:
Made a "What is death ?" thread - for discussing the tangent about definitions of death.
[ 13. July 2017, 18:39: Message edited by: Doublethink. ]
Posted by L'organist (# 17338) on
:
Members of the team caring for Charlie Gard at GOSH - nurses, technicians and doctors - are now receiving death threats through social media, at the hospital and in their own homes. Dear Lord, what a world.
Posted by Golden Key (# 1468) on
:
Yuck. People seem to do death threats much more often and easily these days.
News crawler on TV screen has a flash that an American doctor said treatment for Charlie Gard is worth a try.
Posted by L'organist (# 17338) on
:
He would know of course, having never seen the child, nor any scans, etc.
The High Court have taken the unusual step of placing an injunction on revealing the name of the Counsel appointed by the court to represent Charlie - tells you a lot, doesn't it?
Posted by Martin60 (# 368) on
:
Where it possibly can go to shit, it will. The American hijacking of this without a dissenting American voice that I can hear is the shittiest development. It's beginning to remind me of '70s sci fi, like John Brunner's awesome 'Stand on Zanzibar' and much, much else. Early Larry Niven anthologies, Harry Harrison, Ray Bradbury and the like. "Prexy says ..." ending with people on the west coast of Ireland smelling 'that great burning'.
Posted by Golden Key (# 1468) on
:
L'organist--
quote:
Originally posted by L'organist:
He would know of course, having never seen the child, nor any scans, etc.
I heard later that he's the one with the experimental treatment, and he said his usual "10% chance" of working.
Posted by Jane R (# 331) on
:
Lest we forget: the NHS has been ranked top of a list of 11 health systems in 'wealthy' countries. Again.
Not something you will hear representatives of the nation that came bottom mentioning, when talking about the Gard case.
And of course "the American doctor" would think there's a 10% chance of improvement if his treatment is tried. After all, if it doesn't work he can blame the NHS for not handing poor Charlie over to him in time. Win-win from his point of view.
Posted by Mere Nick (# 11827) on
:
quote:
Originally posted by Golden Key:
mr cheesy--
Re Limbaugh's site being "a little weird":
You probably don't know this, living elsewhere. But Limbaugh has a long record of being an alt-Right wacko. And that's the flavor of "journalism" he does. FYI.
He's a conservative, not "alt-right". It appears alt-right folks are suspicious of free markets, for example. Limbaugh is not.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Mere Nick:
quote:
Originally posted by Golden Key:
mr cheesy--
Re Limbaugh's site being "a little weird":
You probably don't know this, living elsewhere. But Limbaugh has a long record of being an alt-Right wacko. And that's the flavor of "journalism" he does. FYI.
He's a conservative, not "alt-right". It appears alt-right folks are suspicious of free markets, for example. Limbaugh is not.
Free market skepticism isn't a core value of "alt-right" racism is pretty much the defining core.
Posted by Mere Nick (# 11827) on
:
quote:
Originally posted by lilBuddha:
Free market skepticism isn't a core value of "alt-right"
Oh, ok. Free markets are a core value of mine and alt-right folks appear to be protectionist.
Posted by BroJames (# 9636) on
:
Not all free markets are equal. Free markets which benefit "us" are good, free trade (an international free market) which might be detrimental to "us" is bad.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Mere Nick:
quote:
Originally posted by lilBuddha:
Free market skepticism isn't a core value of "alt-right"
Oh, ok. Free markets are a core value of mine and alt-right folks appear to be protectionist.
Think that might be because the free market means dealing with furiners instead of 'muricans.
Posted by Mere Nick (# 11827) on
:
quote:
Originally posted by lilBuddha:
quote:
Originally posted by Mere Nick:
quote:
Originally posted by lilBuddha:
Free market skepticism isn't a core value of "alt-right"
Oh, ok. Free markets are a core value of mine and alt-right folks appear to be protectionist.
Think that might be because the free market means dealing with furiners instead of 'muricans.
It is because the merkins who figure their jobs are being protected can vote for you.
Posted by Mere Nick (# 11827) on
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Take Trump's recent statement about steel for example. It may sound good to the US folks in the steel industry, but it seems to be a really bad idea for everyone else.
Posted by Marvin the Martian (# 4360) on
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quote:
Originally posted by Jane R:
And of course "the American doctor" would think there's a 10% chance of improvement if his treatment is tried. After all, if it doesn't work he can blame the NHS for not handing poor Charlie over to him in time. Win-win from his point of view.
Not to mention that whether it works or not, he'll have got a nice big paycheck out of it. There's good money to be made out of feeding grieving parents false hope...
Posted by chris stiles (# 12641) on
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quote:
Originally posted by Mere Nick:
It may sound good to the US folks in the steel industry, but it seems to be a really bad idea for everyone else.
It may not even be that good from the perspective of the average *worker* in the steel industry, let alone the wider economic cost. At some point automation will be a viable strategy to further drive up margin, and then this will happen:
https://www.bloomberg.com/news/articles/2017-06-21/how-just-14-people-make-500-000-tons-of-steel-a-year-in-austria
Posted by Amanda B. Reckondwythe (# 5521) on
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Meanwhile, Senator John McCain had a large blood clot removed from his cranium -- at the Mayo Clinic, no less!
Let's hear it for the quality of insurance that persons in a position to vote it in for themselves, vote it in for themselves.
Posted by Lamb Chopped (# 5528) on
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No need to be crabby--his absence delays and possibly destroys the dreadful bill, and AFAIK he's not totally in favor of the evil thing himself.
Posted by lilBuddha (# 14333) on
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No, I agree with AB.R. Fuck the bastards who fuck their constituents by denying them what the bastards themselves enjoy.
Posted by Brenda Clough (# 18061) on
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The original ACA mandated that Congresspersons be covered by Obamacare. However, in the current proposed redo they took care to bury in the fine print an exception for themselves from all their new laws. I only hope that the exemption applies only while they're in office, so that when they're voted out they're waiting in line with the rest of us, but I am not confident. (The pension plan for Congress is of a dazzling magnificence.)
Posted by Lamb Chopped (# 5528) on
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quote:
Originally posted by lilBuddha:
No, I agree with AB.R. Fuck the bastards who fuck their constituents by denying them what the bastards themselves enjoy.
[pulls out hair]
He hasn't done so yet--that's the point, taken together with the fact that this is one of the few Republicans with the cojones to stand up to Trump. At least on occasion.
Posted by mdijon (# 8520) on
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Here's the list of Trump-opposing senators according to the hill.
It looks like McCain is the top of the list. Personally I'd prefer he stayed there.
Posted by lilBuddha (# 14333) on
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quote:
Originally posted by Lamb Chopped:
quote:
Originally posted by lilBuddha:
No, I agree with AB.R. Fuck the bastards who fuck their constituents by denying them what the bastards themselves enjoy.
[pulls out hair]
He hasn't done so yet--that's the point, taken together with the fact that this is one of the few Republicans with the cojones to stand up to Trump. At least on occasion.
My Bad, re McCain and those who blocked the bill. Fuck the rest.
Posted by Eutychus (# 3081) on
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Does this mean the GOP is set to do the US equivalent of invoking Article 50 for Brexit and decree Obamacare dead in two years' time (after the mid-terms) without putting a substitute plan in place? Presumably so that Trump can say he at least delivered on the "repeal" part of his Obamacare pledge?
Do I have that right?
[ 18. July 2017, 05:35: Message edited by: Eutychus ]
Posted by mdijon (# 8520) on
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Yes, I think that's the idea. It's incredible that someone found an idea even more stupid than Brexit.
Posted by RuthW (# 13) on
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That is already DOA, thanks to Collins, Capito, and Murkowski.
Also, McCain was going to vote for the Senate healthcare bill. McConnell was delaying the August recess so McCain would have time to recover and fly to DC and vote in favor of killing Americans.
Posted by Golden Key (# 1468) on
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Then someone needs to approach McCain in the hospital, or soon after, and ask him what he would've done without insurance and without money.
Posted by mdijon (# 8520) on
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It does seem remarkable. Presumably that is a principled position for him since he's stood up to Trump quite publicly before. They're all mad.
Hopefully the bill is NFR as well as DOA.
Posted by Martin60 (# 368) on
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quote:
Originally posted by lilBuddha:
quote:
Originally posted by Lamb Chopped:
quote:
Originally posted by lilBuddha:
No, I agree with AB.R. Fuck the bastards who fuck their constituents by denying them what the bastards themselves enjoy.
[pulls out hair]
He hasn't done so yet--that's the point, taken together with the fact that this is one of the few Republicans with the cojones to stand up to Trump. At least on occasion.
My Bad, re McCain and those who blocked the bill. Fuck the rest.
Including those who voted against - Jerry Moran of Kansas and Mike Lee of Utah - apparently because the measures weren't harsh enough on the poor?
Posted by Amanda B. Reckondwythe (# 5521) on
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Meanwhile, it turns out that Senator McCain has brain cancer.
Should give the health care debate an entirely new life.
Posted by Brenda Clough (# 18061) on
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McCain's wife Cindy is an heiress, and McCain himself (a veteran as well as a Senator) has superb health insurance and pension/benefits that would make you stare. I wish him well, but his situation is not comparable to very many other Americans'. You won't see his family running a GoFundMe drive on the internet to raise money for his medication. I think it was F.Scott Fitzgerald who said that the rich are different from you and me.
Posted by Crœsos (# 238) on
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quote:
Originally posted by Lamb Chopped:
He hasn't done so yet--that's the point, taken together with the fact that this is one of the few Republicans with the cojones to stand up to Trump. At least on occasion.
John McCain carefully cultivated (is it too early to be using the past tense?) a reputation as a tough-minded independent, mostly by furrowing his brow and expressing "concerns", followed by voting for whatever his fellow Republicans favored. Given that he voted to approve all of Trump's cabinet secretaries (except for Scott Pruitt, where he bravely didn't vote at all, and Mick Mulvaney, who as the White House Budget Director holds a "cabinet level" position without formally being part of the cabinet) it's hard not to conclude that McCain's "cojones" are seriously over-rated.
A classic (and recent) example of this was McCain's "opposition" to abolishing the filibuster for Supreme Court nominees. After furrowing his brow as deeply as possible and letting everyone know that he 'really' opposed such a move he voted in favor of it.
Posted by Mere Nick (# 11827) on
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quote:
Originally posted by chris stiles:
quote:
Originally posted by Mere Nick:
It may sound good to the US folks in the steel industry, but it seems to be a really bad idea for everyone else.
It may not even be that good from the perspective of the average *worker* in the steel industry, let alone the wider economic cost. At some point automation will be a viable strategy to further drive up margin, and then this will happen:
https://www.bloomberg.com/news/articles/2017-06-21/how-just-14-people-make-500-000-tons-of-steel-a-year-in-austria
I'm hip, man.
Posted by Bishops Finger (# 5430) on
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It is a bit soon to write off Mr. McCain, though a glioblastoma really is a nasty little bugger - with successful treatment, he could live for another year or two. Long enough to be a pain in Trump's arse, anyway, should he be so inclined.
I sympathise - I had a meningioma removed last year, and that was bad enough. Fortunately, meningiomas are, comparatively speaking, the good guys, and mostly non-malignant.
IJ
Posted by wild haggis (# 15555) on
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This thread has gone a long way from the original post.
Just come through on the radio that Charlie Grad's parents have dropped their court case against Great Ormonde Street Hospital- just before the American peadiatrician was to give his judgement in court.
What a waste of public funds this court case has been. What anguish it has caused to innocent doctors, nurses and patients who have been trolled because of what his parents, in their grief have said about the hospital.
I feel very, very sorry for the parents. It is so tragic when a child has a congenital condition such as Charlie's.
This whole situation could have been avoided had the parents accepted the medical opinion of world experts at the beginning.
Now they should let this poor wee mite go to his maker in peace.
I hope they give their crowd funding money to GOSH after what they said about the doctors.
Posted by L'organist (# 17338) on
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Although much has been made of the reporting in court last week of a "latest scan" which was described as "devastating", it would seem that a lot of this case has hinged around the preparedness of the Gard parents to accept medical fact. The fact that the doctor from the US (on whose experimental treatment the parents had pinned their hopes) concurs with the GOSH medical team about Charlie's medical condition and prognosis appears to have finally opened their eyes.
At the same time, they - or their spokesperson - are still flinging mud at GOSH, stating that "time ran out for Charlie" - in other words, they still don't get that their child's condition was terminal from the get-go.
Meanwhile, far from putting paid to the offensive crowd of "supporters" outside GOSH, this rent-a-crowd mob are now chanting offensively about the judge, the court system and (still) GOSH.
A very, very sad day for Ms Yeats and Mr Gard but the fact remains that some of their more ill-advised statements, even prompted as they may have been by despair at the state of their son, has whipped-up a storm of bigotry and hatred towards a world-class hospital and its staff that is abhorrent. Furthermore, their bullying and hectoring protest aimed at obtaining "justice for Charlie" has (and is) causing acute difficulty and distress to the parents of other sick children in GOSH.
Perhaps the US pastor and pro-life lobbyists who have orchestrated so much of this can now turn their attention to trying to mend the damage they and their intemperate comments have caused.
Posted by Jane R (# 331) on
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L'organist: quote:
Perhaps the US pastor and pro-life lobbyists who have orchestrated so much of this can now turn their attention to trying to mend the damage they and their intemperate comments have caused.
Doubt it. First, because mending things is always harder than breaking them. Second, because in their twisted alternate reality they haven't done anything wrong.
...but I'd love to be wrong about this.
[ 24. July 2017, 15:22: Message edited by: Jane R ]
Posted by Bishops Finger (# 5430) on
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Meanwhile, woe, woe, and thrice woe, to the rent-a-crowd 'protesters' etc. Shame on them.
IJ
Posted by quetzalcoatl (# 16740) on
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Yes, I've been shocked at the hostility of the demonstrators to the hospital and the doctors, and the judge of course.
And the right-wing hijacking of the case to damn the NHS. What a miserable blend of ignorance and prejudice.
Posted by Penny S (# 14768) on
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The money will go to a Charlie Gard Foundation.
Posted by Bishops Finger (# 5430) on
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So at least some good will, hopefully, come out of this sorry affair.
IJ
Posted by Doublethink. (# 1984) on
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It's so sad.
I do hope that US doctor thinks twice about promising the earth to desperate people in the future.
Posted by Doublethink. (# 1984) on
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It is reported the doctor had a financial interest in the treatment he was touting¹ - FFS
----
¹ Sky News
[ 24. July 2017, 22:19: Message edited by: Doublethink. ]
Posted by M. (# 3291) on
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My iPad won't link, but you can read the hospital's press release and statement prepared for court on its website.
M.
Posted by Rocinante (# 18541) on
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According to Unicef, 29,000 children die every day, mostly from malnutrition or diseases with well-established treatments that don't cost millions. What is so special about this one? I'm afraid I am genuinely mystified.
His parents have quite a talent for publicity, that's for sure.
Posted by Baptist Trainfan (# 15128) on
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quote:
Originally posted by Penny S:
The money will go to a Charlie Gard Foundation.
And how will that be administered? Couldn't it just been given as a lump sum to GOSH?
Posted by Marvin the Martian (# 4360) on
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quote:
Originally posted by Doublethink.:
It is reported the doctor had a financial interest in the treatment he was touting¹ - FFS
I am not even the least little bit surprised. As I said a few days ago, there's good money to be made from giving grieving parents false hope .
Posted by mr cheesy (# 3330) on
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quote:
Originally posted by Rocinante:
His parents have quite a talent for publicity, that's for sure.
That's harsh. Their child was dying and they had a platform to try to prolong his life and they fought tooth-and-nail to do whatever they could.
I don't think anyone can be criticised for doing that in their situation. Yes, they were fortunate to be in a system which gave them more than a mother in poverty with a child dying of measles and with no access to healthcare. But I bet any mother in that situation would have done more if she could.
[ 25. July 2017, 08:42: Message edited by: mr cheesy ]
Posted by mark_in_manchester (# 15978) on
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Good money to be made from giving _rich_ grieving parents false hope. But no money to be made from giving _poor_ grieving parents (29,000 x 2 of them, every day), real hope.
What is it about comment on the internet which makes me want to state the obvious and view it as profound. Sorry, that's getting at me, not at anyone else.
Posted by mark_in_manchester (# 15978) on
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quote:
But I bet any mother in that situation would have done more if she could.
Call me a throw-back to an age of deference, but if a doctor were to tell me 'we can't do more than manage his pain as he dies' I would think 'thank fuck you can do that, and I'm not in the back end of nowhere having to decide when I ought to hit him with a spade and end the agony'.
Well, that's the kind of lines I was thinking along during the difficult births of my two kids.
Posted by chris stiles (# 12641) on
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quote:
Originally posted by Rocinante:
His parents have quite a talent for publicity, that's for sure.
I suspect that the most they contributed was being young and relatively photogenic. They were probably caught up in a process they were not fully in control of - especially once public figures abroad started to get involved.
Posted by wild haggis (# 15555) on
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Wonder what the Charlie Gard Foundation is, what is it for and who will manage it?
It's all too easy to think of setting up a charity but the managing of it within the law is not so easy.
What is this foundation aiming to do with the money?
Wouldn't it be better for it to go to GOSH where we know it will be used to improve children's health in a world class setting.
Posted by mr cheesy (# 3330) on
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OK, not that anyone else cares but I'm going to stop looking. I don't think this intensive view of a family in crisis is helping anyone.
Posted by Golden Key (# 1468) on
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Re the Sky News article:
I'm not terribly worried about the doc's financial interest, because he helped develop the treatment. I don't know how that's usually handled, but I don't think it's *necessarily* greedy or nefarious.
I'm more concerned that he didn't brush up on the case before appearing in a UK court. The article lists all the stuff he hadn't familiarized himself with--and THAT is shocking.
Posted by Martin60 (# 368) on
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Perception is power.
Posted by Marvin the Martian (# 4360) on
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quote:
Originally posted by Golden Key:
I'm not terribly worried about the doc's financial interest, because he helped develop the treatment. I don't know how that's usually handled, but I don't think it's *necessarily* greedy or nefarious.
I think it's inherently undesirable for doctors to have a financial interest in the treatments/medicines they're prescribing. If I'm told I need a treatment/medicine then I want to be able to be confident that the doctor has prescribed it because it's the best treatment/medicine for me and my condition, rather than because it's the one that makes the doctor the most money.
Posted by Amanda B. Reckondwythe (# 5521) on
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quote:
Originally posted by Marvin the Martian:
If I'm told I need a treatment/medicine then I want to be able to be confident that the doctor has prescribed it because it's the best treatment/medicine for me and my condition, rather than because it's the one that makes the doctor the most money.
Especially if he knows diddly squat about your chart.
Posted by Marvin the Martian (# 4360) on
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That goes for any prescribing doctor, of course.
Posted by Jane R (# 331) on
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Marvin: quote:
I think it's inherently undesirable for doctors to have a financial interest in the treatments/medicines they're prescribing. If I'm told I need a treatment/medicine then I want to be able to be confident that the doctor has prescribed it because it's the best treatment/medicine for me and my condition, rather than because it's the one that makes the doctor the most money.
I agree, but I gather it's common practice in the US for Big Pharma to offer 'incentives' to doctors?
Posted by Leorning Cniht (# 17564) on
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quote:
Originally posted by Marvin the Martian:
I think it's inherently undesirable for doctors to have a financial interest in the treatments/medicines they're prescribing.
Presumably this doctor holds a patent on the technique that he developed, which is how the financial interest arises.
But all doctors in a US-style system have a financial interest in the treatment: each procedure earns the doctor some sum of money (usually off a tariff set by the insurance company if it's a "normal" procedure). Some procedures earn the doctor more than other procedures, and of course an unnecessary procedure always earns more money than nothing.
Posted by Marvin the Martian (# 4360) on
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quote:
Originally posted by Jane R:
I agree, but I gather it's common practice in the US for Big Pharma to offer 'incentives' to doctors?
Just one more reason why healthcare in the US is screwed up.
Posted by L'organist (# 17338) on
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posted by chris stiles quote:
Originally posted by Rocinante: quote:
His parents have quite a talent for publicity, that's for sure.
I suspect that the most they contributed was being young and relatively photogenic. They were probably caught up in a process they were not fully in control of - especially once public figures abroad started to get involved.
Sorry, but that is not a valid excuse for the poisonous "Charlie's army" that has gathered around the Gard's, nor for the more inflamatory statements issued by spokespeople on their behalf.
For reasons I won't bore you with, I have some first-hand experience of this type of media attention: if the family concerned take reasonable steps it is possible to limit what is made available to the press, and even if so-called "professionals" approach with offers of "help" you don't have to take them.
The judge only gave leave for reporting restrictions to be lifted in the case because the Gard parents had already broken the injunction on speaking to the media: that is contempt of court and in less fraught circumstances may have resulted in a hefty fine or a short prison sentence.
All through this case the Gard's have courted the press at every opportunity and have shown themselves unmoved at the distress and disruption caused to the parents of other sick children in GOSH by the actions of "Charlie's Army" crods outside the building. Having had reason to be up in Lamb's Conduit Street a week ago I have experienced the antics of these people and the noise they make - it was very threatening and impossible to ignore.
As for what the Gard's decide to do with the donations given: there is the Lily Foundation, named for a little girl with the same condition as Charlie, which funds research in MDDS in the UK.
Posted by Bishops Finger (# 5430) on
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Well, the Lily Foundation and GOSH are both deserving causes, so to speak, so perhaps the Gards could split the £££ between the two?
Apart from anything else, it might go some way to redress the wrongs suffered by GOSH, and its staff, from the media 'circus', and its creatures.
http://www.thelilyfoundation.org.uk/
IJ
Posted by orfeo (# 13878) on
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Anyone remember the case where a hospital claimed that parents "kidnapped" their own child and took him to Spain... where the parents got arrested on the basis of the warrant for the "kidnapping"?
Because that's the last similar high-profile case I can recall along these lines. And as the story developed the hospital got more and more egg on its face as it turned out the "kidnappers" had every lawful authority to take their own son out of the hospital.
There is something about the UK health system which appears to have doctors believing that they are the ultimate decision-makers over and above parents. Perhaps it's that so much of the treatment is government-funded. And yes, they have responsibilities when it comes to the use of those funds.
But I simply cannot understand the mindset that actively tries to prevent parents from taking their children overseas to try treatments. Certainly you can ADVISE against it, and say why you don't think it'll do any good, but I don't see where doctors think they get the authority to go further than that. To me there's a confusion of roles.
[ 25. July 2017, 16:22: Message edited by: orfeo ]
Posted by orfeo (# 13878) on
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quote:
Originally posted by Doublethink.:
It's so sad.
I do hope that US doctor thinks twice about promising the earth to desperate people in the future.
How is a 10% chance of improvement "promising the earth"?
And how is saying that the window of opportunity for treatment has now closed consistent with this picture of a doctor out to grab money?
[ 25. July 2017, 16:24: Message edited by: orfeo ]
Posted by mdijon (# 8520) on
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It's a very clever promise of the earth. It's a promise of the earth in the sense that it's pretty much impossible to make that promise with anything more than wishful thinking behind it, but there's a caveat if the expensive therapy doesn't work out.
But fraudulent and cruel nonetheless.
Posted by mdijon (# 8520) on
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quote:
Originally posted by orfeo:
To me there's a confusion of roles.
To me the idea that parents own their children to the extent that they have the right to give them harmful treatment, or deny them life-saving treatment, would be a complete confusion of the parental role.
I also think a recollection of a few cases is a bit much to make a statement about the UK health system. I'm sure children have been made wards of court in other countries.
Posted by orfeo (# 13878) on
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quote:
Originally posted by mdijon:
It's a very clever promise of the earth. It's a promise of the earth in the sense that it's pretty much impossible to make that promise with anything more than wishful thinking behind it, but there's a caveat if the expensive therapy doesn't work out.
But fraudulent and cruel nonetheless.
If it turned out to be fraudulent and cruel then the parents could sue.
What bothers me is the notion that your assessment, or the UK doctor's assessment, should prevail over the parent's assessment. Any more than your choice of colour for my bedroom gets to prevail over my own.
More in a moment as I've just been reading the first 2 court decisions and it just amplifies my problem...
Posted by orfeo (# 13878) on
:
quote:
Originally posted by mdijon:
quote:
Originally posted by orfeo:
To me there's a confusion of roles.
To me the idea that parents own their children to the extent that they have the right to give them harmful treatment, or deny them life-saving treatment, would be a complete confusion of the parental role.
Is there the SLIGHTEST evidence that the treatment would harm the dying child?
There sure as hell isn't any evidence it would prevent him from receiving life-saving treatment. The entire bloody point is that the UK hospital is trying to stop treatment on the grounds that it won't do anything. So thanks for that utter red herring.
Posted by mdijon (# 8520) on
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The colour you paint your bedroom is a very poor analogy for a child's well-being.
What if the parents are JWs and refuse blood transfusions? Or faith healers and refuse all medical care? Are we fine with parents enacting death by negligence on their children because who's to say the doctors know best?
Posted by Jane R (# 331) on
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orfeo: quote:
Is there the SLIGHTEST evidence that the treatment would harm the dying child?
The treatment itself, no. The Great Ormond Street medical team argued that it was very unlikely to make a significant difference to his quality of life and that prolonging a life of pain with no prospect of significant improvement was not in his best interests.
Yes, I do remember the Ashya King case. In fact, I linked to it several pages ago: here it is again. It is clear that Southampton General Hospital could have done some things better, but in that case the issue was slightly different; there was an effective treatment available and the NHS offered it, but the parents wanted a different treatment.
You talk about 'taking him abroad' as if it was just a question of hopping on a plane. It's not that easy to transport someone on life support, as mdijon explained earlier.
Posted by orfeo (# 13878) on
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Right, so here's my big glaring problem with the court case.
I very nearly said previously that it's entirely orthodox principle for the hospital to go to court to say that THAT HOSPITAL doesn't want to do certain things. And in fact that's the nature of most of the declarations the hospital wanted. They asked the court to declare that they could withdraw artificial ventilation and only provide palliative care.
But then we come to what I regard as the great big stinking problem, and we can thank the use of passive voice for it.
Here's the full set of declarations sought:
quote:
By their application dated 24th February 2017, the applicants ask the court to make the following orders:
(1) That Charlie, by reason of his minority, lacks capacity to make decisions regarding his medical treatment;
(2) that it is lawful, and in Charlie's best interests, for artificial ventilation to be withdrawn;
(3) that it is lawful, and in Charlie's best interests, for his treating clinicians to provide him with palliative care only; and
(4) that it is lawful, and in Charlie's best interests, not to undergo nucleoside therapy provided always that the measures and treatments adopted are the most compatible with maintaining Charlie's dignity.
Do you see what happens? Declaration (2) is really about the hospital saying "please tell us WE can withdraw treatment". Declaration (3) is similar, saying "please tell us that WE can provide palliative care only".
I wouldn't have the slightest problem if declaration (4) was couched in terms of "please tell us WE don't have to provide nucleoside therapy". But it isn't. It's been framed in a way that leans towards "please tell us that CHARLIE doesn't have to undergo nucleoside therapy".
And frankly I don't know why the hospital thinks it's any of its damn business if Charlie undergoes nucleoside therapy with somebody else who wants to provide nucleoside therapy.
And as far as I can see, the courts have quite unconsciously wandered down that path of reasoning without questioning it. There's quite clear discussion about what it's okay for the hospital to do (withdraw certain treatment), but then it blurs and slips into discussion that isn't at all about what the hospital would do. It's about what some entirely different medical practitioner who isn't a party in the courtroom would do. And I think that's just very wrong in principle. The hospital is perfectly entitled to make applications relating to its own conduct, but to me it's extremely worrying and dangerous for that to morph into an application relating to the conduct of any medical professional, anywhere.
I think part of the reason for this slippage is that courts do indeed have a role in making decisions about certain radical kinds of treatment such as sterilisation of children or treatment for gender dysphoria. One key reason being the treatment can't be undone. But those applications are made by the parents. What we have here is the court making a declaration asked for by a hospital, framed in terms that don't just apply to the hospital.
Forget the particular radical treatment for a moment. It would be wrong to say that if the next hospital down the road wanted to keep Charlie on an artificial ventilator, they couldn't do it because Ormond St didn't want to do it. And declaration (2) was couched in terms that said "it's okay to withdraw ventilation" rather than "no-one can provide ventilation".
But you get to declaration (4) and it morphs from "it's okay for Ormond St to not provide this therapy" to "Ormond St got to ask the court to say that no-one was to provide this therapy".
The hospital has no business making such an application and the court should have fixed it. If the roles had been reversed - if the parents had wanted a declaration that they could say no to treatment the hospital wanted to give - that would have been orthodox and appropriate. But giving the hospital the right to dictate treatment that would occur outside the hospital, that's a fundamental rewrite of the court's supervision of parental jurisdiction and no-one seems to have realised just because the declarations weren't written in active voice.
Posted by orfeo (# 13878) on
:
quote:
Originally posted by mdijon:
What if the parents are JWs and refuse blood transfusions? Or faith healers and refuse all medical care? Are we fine with parents enacting death by negligence on their children because who's to say the doctors know best?
As you will see in my long post, trying to treat "parent wants to refuse treatment" and "hospital wants to refuse treatment" as interchangeable is in my view completely contrary to established legal principle.
This is exactly why active voice - identifying WHO is doing the refusing - is so important. No judge should ever be making a declaration that "treatment can be refused" without identifying who it is that is allowed to refuse treatment.
[ 25. July 2017, 17:03: Message edited by: orfeo ]
Posted by orfeo (# 13878) on
:
quote:
Originally posted by orfeo:
This is exactly why active voice - identifying WHO is doing the refusing - is so important. No judge should ever be making a declaration that "treatment can be refused" without identifying who it is that is allowed to refuse treatment.
Sorry, now I'm going to include an addendum and it's sufficiently important to requote myself:
Because when a hospital "refuses treatment", they are refusing to supply it.
When a patient, or a parent on behalf of a patient, "refuses treatment", they are refusing to receive it.
And that's where this has gone so horribly wrong. Because it's all just been couched as "refusing treatment is okay", you've ended up with a supplier of treatment going to court and getting a declaration that is about receipt of treatment.
Which is fundamentally inappropriate. It makes no more sense than a company who can't/won't provide me with a particular service being able to prevent me from going to any of their rivals to see if the rival can provide the service.
Certainly there are situations where the court has a role in making decisions about receipt of treatment. But that's a supervisory jurisdiction of parents. The hospital, a treatment supplier, does not have a parental role and doesn't belong on that side of the transaction.
[ 25. July 2017, 17:14: Message edited by: orfeo ]
Posted by Jane R (# 331) on
:
I see what you mean, orfeo.
In cases like this the court appoints an independent guardian for Charlie with the job of representing his interests. That's why there are three plaintiffs (if I've got the terminology right), not just two (Charlie's parents).
However, we do take a dim view of unnecessary medical procedures over here: in fact someone has just been struck off for carrying out a number of unnecessary operations.
[ 25. July 2017, 17:20: Message edited by: Jane R ]
Posted by orfeo (# 13878) on
:
quote:
Originally posted by Jane R:
In cases like this the court appoints an independent guardian for Charlie with the job of representing his interests. That's why there are three plaintiffs (if I've got the terminology right), not just two (Charlie's parents)
Again, I'm not sure that's normally true in "cases like this". It's true in cases where parents go to court to seek an order about treatment.
Posted by orfeo (# 13878) on
:
This kind of confusion of roles is pretty common. Another example that I think was discussed here at the time was the so-called ban of a Christian ad in cinemas.
Which led to all sorts of stuff about rights to freedom of speech and so on, as if the cinema company involved was the government and had forbidden the ad. In that case, there was nothing to prevent a different company providing the service of screening the ad if they liked the ad. There was no "ban".
With Charlie, on the other hand, we seemingly ended up with one hospital succeeding in banning anyone else from doing the treatment, even if some other medical practitioner genuinely believed the treatment was worthwhile.
Posted by Doublethink. (# 1984) on
:
Best interest law in the UK doesn't work the way you suggest. I'm more familiar with adults lacking capacity, but in any case, best interest decisions are not reserved to the family and/or parents.
Essentially, the hospital were arguing that what the parents wanted to do was harmful to the child. As medics already treating, they had a duty of care to the child.
The treatment suggested hadn't even been tested in mice for the condition the baby has, if some random doctor had said amputating his leg would help - would you expect the hospital to facilitate that ?
[ 25. July 2017, 18:34: Message edited by: Doublethink. ]
Posted by Doublethink. (# 1984) on
:
You may find the British Medical Association guidance¹ relevant.
---
¹ BMA
Posted by ThunderBunk (# 15579) on
:
Legally there are two different processes. Guardians ad litem (or whatever they are currently called - my information is about 10 years old) are appointed to represent the interests of children in adoption and other legal proceedings, where the parents are not present or otherwise being held to be able do so.
The Court of Protection appoints deputies to manage the properties and affairs, or the health and welfare, of adults who lack the mental capacity to do so.
Then there are orders under the Mental Health Act 1983, with which I am less familiar, but that is the act, which among other things people are detained against their wills because they are a danger to themselves or others. From scrutiny of the legislation, I can't see who is appointed to deal with their affairs - Doublethink???
Posted by Eirenist (# 13343) on
:
What I fail to understand is how 'Charlie's Army' and their supporters could believe that picketing GOSH and the RCJ, screaming abuse at doctors, nurses, lawyers and the judge, sending death threats, etc. could ever be the slightest assistance to the parents' case. Can anyone explain?
Posted by Jane R (# 331) on
:
orfeo: quote:
I'm not sure that's normally true in "cases like this". It's true in cases where parents go to court to seek an order about treatment.
That is in fact what I meant when I said 'cases like this'. I apologise if I was unclear. Court-appointed guardians are not necessary in cases where the parents are willing to listen to medical advice. They are not even necessary when the parents ask for a second (medical) opinion, as is their right.
As Doublethink has pointed out, the hospital have a duty of care towards Charlie. Do you really think they would have wasted all this money on lawyers and gone through all this circus if they hadn't, or didn't care what happened to him?
Are children considered to be the property of their parents in Australia as well?
[ 25. July 2017, 18:52: Message edited by: Jane R ]
Posted by Doublethink. (# 1984) on
:
MHA detention of adults only overrides capacity with regard to decisions about care and treatment of the mental disorder, not - for example - accommodation.
If you need to make a decision whilst, say, acutely psychotic, the person requiring the decision to be made will need to assess your capacity - if you are found to lack capacity then a best interest decision must be made (if the decision can't be delayed until you're better) and this may require an application to the court of protection depending both on the nature of the decision and whether it is disputed.
Best interest decision should involve those involved in your care and family/carers - but if you are considered to be 'unbefriended' you would be assigned an independent advocate.
All this has to be properly documented, and can be disputed by interested parties in the courts.
Child is different, cos the default assumption is that the parents can make the key decisions, this only gets complicated if those around them come to believe they are not making decisions in the child's best interest or that they lack the capacity to do so for some reason. Then it becomes either a court or social services issue.
These high profile cases are rare because everyone involved desperately wants to avoid going down that route, no one wants to try to displace next of kin decision makers. It's a protracted legal nightmare and massively damages therapeutic relationships etc. Clinical teams will bend over backwards to avoid it.
I notice GOSH, had commissioned independent second opinions and invited that US doctor over in January - the case didn't come to court until all those various attempts at reaching a shared decision had failed.
[ 25. July 2017, 18:57: Message edited by: Doublethink. ]
Posted by Doublethink. (# 1984) on
:
I think we also need to add the treating team's duty to the child is separate from what a hospital may be able or willing to supply.
So if a doctor sees a child with cleft lip and palate in a local hospital but the cleft centre is in a regional centre at a different hospital - they have a duty to refer to the regional service for appropriate treatment. If the parent wants send their child to be treated privately, the NHS doctor would be expected to make the referral sending the relevant information onto the private provider.
If the parent is trying to get the child referred for a completely inappropriate treatment, like say trepanning, even if is being done under medical control in a proper operating theatre - that will cause serious concern, the doctor will refuse to refer and it'll become a legal issue.
Posted by orfeo (# 13878) on
:
But you are still presenting a situation where it's about the doctor refusing to do something. And I would not have the slightest problem with the doctor asking the court: "please give me a declaration that I don't have to do this".
But that word "I" is crucial.
Similarly, talk of a duty of care... this is what worries me, slipping from a duty of care about what the hospital does or doesn't do into a GENERALISED duty of care where the hospital is a parent and gets to make decisions about what anyone else will do with the child.
And would people stop suggesting I'm talking about children as property. 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. You will prosecute a parent who fails to take the necessary care. If a parent just left a sick child at a hospital and said "well, they're looking after her now", you'd be appalled.
Posted by Brenda Clough (# 18061) on
:
A summary of the American assholes who made the entire situation much worse. I should emigrate.
Posted by Curiosity killed ... (# 11770) on
:
Since the Children's Act 1989 the duty of care of children in England and Wales has changed to anyone who works with children. Parents have primacy and should be consulted, but education health and social care all have duties of care. That duty of care has been reinforced by additional legislation.
Posted by orfeo (# 13878) on
:
That article still gets basic things about the case wrong, making it look like the parents went to court instead of the hospital.
Posted by orfeo (# 13878) on
:
quote:
Originally posted by Curiosity killed ...:
Since the Children's Act 1989 the duty of care of children in England and Wales has changed to anyone who works with children. Parents have primacy and should be consulted, but education health and social care all have duties of care. That duty of care has been reinforced by additional legislation.
"Duty of care" is not equivalent to "having care of" or having custody, and this is exactly what worries me.
Every time I get in my car I have a duty of care towards other drivers, pedestrians, anyone around me. This is no way empowers me to make decisions for them. That is not what "duty of care" MEANS as a legal concept. It's a duty to take care, to take that person into account, to consider their interests.
[ 25. July 2017, 23:21: Message edited by: orfeo ]
Posted by orfeo (# 13878) on
:
Having a fairly quick look at the 1989 Act, it is immediately clear that it does not intend to change the law on "parental responsibility" (that term is defined).
And that's fundamental to my problem here. Having a duty of care towards a child is simply not equivalent to having parental responsibility towards a child.
What the Act then does is then impose other duties on various other people. I cannot yet see anything that suggests that the legislation makes parental responsibility shared across the various people that might work with a child.
I'm quite certain that various people who interact with a child have duties towards that child that affect their own interactions with the child. But the fundamental difference with parents is that they have a general responsibility to manage the interactions a child has with other people.
[ 25. July 2017, 23:32: Message edited by: orfeo ]
Posted by Doublethink. (# 1984) on
:
Case law in the UK is that disputes over medical treatment of a child fall within the inherent jurisdiction of the high court.
Posted by Leorning Cniht (# 17564) on
:
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?
Posted by orfeo (# 13878) on
:
quote:
Originally posted by Doublethink.:
Case law in the UK is that disputes over medical treatment of a child fall within the inherent jurisdiction of the high court.
I know. That's not quite the issue. The issue is how a dispute about the treatment to be undertaken in Ormond St hospital became a right for Ormond St hospital to intervene in relations between the parents and any other medical practitioner.
"Disputes over medical treatment" requires you to identify the parties to the dispute. If the parents and a doctor in Edinburgh had agreed on a course of treatment, there being no disputes between them, what legal basis would there be for someone else to waltz in and say "I don't agree"? Can any old doctor pipe up, or does it have to be one who saw the child previously?
You all seem to think that being someone's treating doctor at present somehow gives a general power to manage all treatment. And I cannot for the life of me understand why. I cannot see why you think that one member of a profession ought to be able to regulate the future relationship between a client and another member of the profession. In most cases that would be labelled a restraint of trade.
There's a fundamental difference between a doctor saying "I don't want to do that" and a doctor saying "I don't want anyone to do that", and until these couple of recent cases the nanny state hadn't extended as far as doctors actively preventing patients/parents from following up on alternative options.
Posted by orfeo (# 13878) on
:
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 ]
Posted by Leorning Cniht (# 17564) on
:
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.
Posted by Golden Key (# 1468) on
:
orfeo--
Thanks for your sane posts.
Posted by orfeo (# 13878) on
:
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 ]
Posted by Curiosity killed ... (# 11770) on
:
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.
Posted by Doublethink. (# 1984) on
:
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. ]
Posted by orfeo (# 13878) on
:
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 ]
Posted by Doublethink. (# 1984) on
:
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. ]
Posted by Doublethink. (# 1984) on
:
Any sort of professional contact, that is.
Posted by BroJames (# 9636) on
:
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.
Posted by Doublethink. (# 1984) on
:
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.
Posted by Boogie (# 13538) on
:
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.
Posted by mdijon (# 8520) on
:
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.
Posted by Jane R (# 331) on
:
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.
Posted by orfeo (# 13878) on
:
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.
Posted by orfeo (# 13878) on
:
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 ]
Posted by Boogie (# 13538) on
:
A thoughtful article.
By someone who understands.
Posted by Jane R (# 331) on
:
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 ]
Posted by Gee D (# 13815) on
:
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.
Posted by quetzalcoatl (# 16740) on
:
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.
Posted by BroJames (# 9636) on
:
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.
Posted by mdijon (# 8520) on
:
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.
Posted by Leorning Cniht (# 17564) on
:
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.
Posted by Leorning Cniht (# 17564) on
:
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 ]
Posted by Bishops Finger (# 5430) on
:
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
Posted by Doublethink. (# 1984) on
:
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. ]
Posted by Doublethink. (# 1984) on
:
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. ]
Posted by alienfromzog (# 5327) on
:
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
Posted by Gee D (# 13815) on
:
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.
Posted by quetzalcoatl (# 16740) on
:
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?
Posted by quetzalcoatl (# 16740) on
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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.
Posted by Gee D (# 13815) on
:
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.
Posted by quetzalcoatl (# 16740) on
:
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.
Posted by Boogie (# 13538) on
:
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
Posted by mdijon (# 8520) on
:
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.
Posted by L'organist (# 17338) on
:
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.
Posted by Rocinante (# 18541) on
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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.
Posted by quetzalcoatl (# 16740) on
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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.
Posted by Bishops Finger (# 5430) on
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He has, it would seem.
http://www.bbc.co.uk/news/uk-england-40745988
IJ
Posted by Marama (# 330) on
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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.
Posted by Boogie (# 13538) on
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Bless you Marama
Posted by mdijon (# 8520) on
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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.
Posted by Bishops Finger (# 5430) on
:
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
IJ
Posted by orfeo (# 13878) on
:
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 ]
Posted by quetzalcoatl (# 16740) on
:
One of the better articles on the case:
https://reaction.life/charlie-gard-facts/
Posted by mdijon (# 8520) on
:
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).
Posted by Eirenist (# 13343) on
:
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?
Posted by mdijon (# 8520) on
:
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.)
Posted by Dave W. (# 8765) on
:
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.
Posted by orfeo (# 13878) on
:
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 ]
Posted by L'organist (# 17338) on
:
posted by Orfeo quote:
In that context, describing an attempt at actual treatment as "harm" is... well frankly it's perverse. I'm fine with arguing it was pointless or futile, but describing it as harmful when the alternative is certain death takes some serious mental juggling.
The argument was not about "harm" in that sense, it was about causing "unnecessary suffering" which is fundamentally different.
It was apparent to the multi-disciplinary team at GOSH as early as last December that Charlie Gard had suffered irreversible brain damage and that the effects on him had been catastrophic, causing him to become blind, deaf, mute, and suffer profound damage to his kidneys. Of gravest concern to them were the seizures which he was beginning to suffer with increasing frequency (again indicative of profound neurological damage) which caused his body to spasm or fit, which was probably causing the infant pain: but because of his inability to make any noise it was impossible to tell with any degree of certainty when, and to what degree, he was in pain.
GOSH eventually went to court because after 3 months they had been unable to get through to the parents that the involuntary spasms were not normal movement, or that the lack of any outward sign from their child was not a sign that he was not in pain. As physicians dedicated to the relief of suffering I imagine they were becoming increasingly haunted that the acts of ventilating and tube feeding the child, thus keeping him alive, were in fact prolonging and worsening his suffering and causing him to feel pain which he was unable to express.
And moving the child to the US - leaving aside the logistical difficulties of getting him there - was almost guaranteed to worsen the pain he was likely to be suffering, but without the prospect of any positive improvement in his condition. In other words, the act of ventilating Charklie, thus enabling life to continue, was the very act that was enabled these painful seizures to continue.
In my book, that constitutes causing harm - certainly that was the view taken by the judge.
[ 30. July 2017, 23:25: Message edited by: L'organist ]
Posted by orfeo (# 13878) on
:
quote:
Originally posted by L'organist:
certainly that was the view taken by the judge.
Was it?
I will have to go back and look at the judgement before agreeing.
Whether it was in the best interests of the child is not the question I'm raising here. Because my issue is not with the judge's findings about futility, but querying on what basis the hospital could step into this treatment decision.
If we're going to say they could override the parent's wishes because the parents wanted something harmful, we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.
Posted by Leorning Cniht (# 17564) on
:
quote:
Originally posted by orfeo:
If we're going to say they could override the parent's wishes because the parents wanted something harmful, we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.
The harm was ongoing. GOSH believed that Charlie was suffering significant ongoing pain, and that prolonging his death was causing him unnecessary extra suffering.
The judge, in his ruling, references Charlie's parents as having accepted that in his then current condition, Charlie's life was not worth prolonging.
In other words, the harm was not in question. The question was whether the nucleoside treatment would help Charlie (extra harm to Charlie in the cause of an improved quality of life might be worth it. Extra harm that gets nowhere - not so much.)
Posted by mdijon (# 8520) on
:
quote:
Originally posted by orfeo:
I'm fine with arguing it was pointless or futile, but describing it as harmful when the alternative is certain death takes some serious mental juggling.
What if it causes pain and suffering in the attempt?
Posted by mdijon (# 8520) on
:
quote:
Originally posted by orfeo:
we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.
There was quite a lot of discussion about the possibility that Charlie could still feel pain, with one witness thinking that he could. (In a sense it's a catch 22 - if he's so far gone he can't feel pain then the treatment is doubly futile, if he's not so far gone then the treatment might well cause suffering.)
There was the point that the bag of stuff they want to give has never been given to a rat before, and therefore they have no idea what sort of local or systemic reaction to expect in a human being. There is a risk of suffering there.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by mdijon:
Sure, he's a quack.
quote:
Originally posted by Dave W.:
quote:
a person who dishonestly claims to have special knowledge and skill in some field, typically in medicine.
I don't think that's a reasonable term for Dr Hirano.
I think his claims of benefit were dishonest, and imply a lack of expertise in how a new treatment is worked up. He had no basis for claims of 10% chances of benefit, or anything else that he claimed. This was a drug that hadn't been given to laboratory rats for this condition, that was unlikely to cross the blood brain barrier, and he hadn't bothered to inform himself adequately regarding the case.
I appreciate he has a prestigious position and has expertise in neurology, but his behaviour in this instance is quackery.
If it walks like a duck...
Posted by Golden Key (# 1468) on
:
IIRC, I read an article about a kid with another mitochondrial disease who was helped by the treatment. I'll look for it, but it may take a couple of days.
Posted by mdijon (# 8520) on
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From quetzalcoatl's earlier link; quote:
The specific variant of mitochondrial DNA depletion disease which Charlie Gard has/had, RRM2B, affects both muscle and brain, and has never been effectively treated, much less reversed or “cured”. There is no known cure for mitochondrial disease, though there are treatments of varying efficacy for some variants. The “treatment” people thought was being offered by Professor Michio Hirano is not only untested on humans, it’s untested on mice, as the judge noted — in a passage of his July judgment in which he appears supremely pissed off with Prof Hirano for having strung out the court and especially the parents for more than six month since January (when Gt Ormond St invited him to come and examine Charlie, an invitation which he never took up)
[ 31. July 2017, 05:08: Message edited by: mdijon ]
Posted by Golden Key (# 1468) on
:
Here:
"This man’s son tried the experimental treatment Charlie Gard’s parents want" (CNN Wire, via KFOR).
Arthur Estopinian says Arturo, his son, was helped by the treatment--and he was the one who put the Gards in touch with Dr. Hirano.
Additional perspectives:
"Why Charlie Gard’s case is so disturbing to Americans" (STAT magazine of medical journalism).
"Mito Hope & Help" (Support site on Facebook).
Posted by mdijon (# 8520) on
:
From the same article: quote:
In a tissue biopsy, mitochondrial DNA levels were found to be 6% of normal, and falling. (MDDS is diagnosed by levels below 35%.) Clearly he was already very, very ill, with a disease for which in general there are “no cures, and few effective treatments”. For RRM2B, because it affects the brain too (unlike other versions which only affect the muscles), the idea of treatment is remote. If you saw a report on CNN which said “and here’s someone with mitochondrial disease just like Charlie Gard!” it was possibly TK2, and it isn’t like his. RRM2B is also progressive: unless you can figure out how to make the mitochondria work, the condition will worsen and lead inevitably to death.
Posted by Boogie (# 13538) on
:
quote:
Originally posted by Golden Key:
Here:
"This man’s son tried the experimental treatment Charlie Gard’s parents want" (CNN Wire, via KFOR).
Arthur Estopinian says Arturo, his son, was helped by the treatment--and he was the one who put the Gards in touch with Dr. Hirano.
Additional perspectives:
"Why Charlie Gard’s case is so disturbing to Americans" (STAT magazine of medical journalism).
"Mito Hope & Help" (Support site on Facebook).
Which adds to my feeling that Charlie would have suffered less if the US doctor and supporters had kept their noses out.
Posted by Golden Key (# 1468) on
:
Boogie--
How so, please? Granted, the doc was very, very wrong not to follow up on all of Charlie's info. (Has anyone heard why??)
But ISTM that most people who tried to help (as opposed to people (like anti-abortion activists) who were forcing their own agenda) were simply trying to help. The Gards wanted to do everything they possibly could to save their son, or at least give him a chance. I skimmed some of the Mito support group postings. Looks like they supported the Gards, and some definitely thought they should have a chance to decide on their own. One went so far as to call what the powers that be did "murder".
Posted by Curiosity killed ... (# 11770) on
:
quote:
Originally posted by orfeo:
<snip> my issue is not with the judge's findings about futility, but querying on what basis the hospital could step into this treatment decision.
If we're going to say they could override the parent's wishes because the parents wanted something harmful, we have to identify what was harmful, not just futile. And I don't recall what evidence, if any, is in the judge's decision about harm rather than futility.
orfeo, having read the April judgement, the phrasing is to stop additional treatment to Charlie, whatever hospital, because his condition had deteriorated so badly. The whole judgement is what is in the best interests of Charlie, and he was represented in court by his team, who have been kept anonymous. The judge is deciding for Charlie as the hospital and family cannot come to a consensus, other than Charlie continuing on ventilation with no chance of recovery was not what anyone wanted. The contention was that the parents wanted the hospital to allow Charlie to trial the nucleoside bypass therapy after the hospital discounted it at a meeting on 13 January, which the parents attended.
GOSH were going to trial the nucleoside therapy in January, after consultation with others. On 9th January it was going ahead, a planned meeting of the Ethics Committee on 13th January to discuss and approve this (para 79 and 82). What changed is that Charlie started having catastrophic epileptic fits in January (probably started in December), from 9th or 10th January "intermittently to 27th January" that could only be seen on brain scan, because he had no muscles to make his body move. There were electrical impulses, no responses. Those fits were indicators that the brain damage had deteriorated and he only had months to live whatever support he had. He had no muscles to support breathing, so the ventilator was forcing air into him, with the corresponding damage to his lungs, other organs were failing, particularly his kidneys.
He was born 4 August 2016 looking normal but within a few weeks was failing to thrive. He had already deteriorated badly enough to be on a ventilator and feeding tube in GOSH intensive care by October, and diagnosed in late October, early November. He was on a feeding tube first to help him put on weight, and later referred to GOSH. It took experimental DNA analysis to diagnose him with later confirmation from more conventional sources in December.
Dr Hirano said:
quote:
“Seeing the documents this morning has been very helpful. I can understand the opinion that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.” (para 98)
His evidence is not consistent in the hearing, or with his public pronouncements. He also said:
quote:
“It is very difficult for me never having seen him, being across the Atlantic and seeing bits of information. I appreciate how unwell he is. His EEG is very severe. I think he is in the terminal stage of his illness. I can appreciate your position. I would just like to offer what we can. It is unlikely to work, but the alternative is that he will pass away.” (para 128)
The procedures that Charlie was undergoing to be kept alive included nasal suction to keep his lungs clear and other invasive treatments, including regular blood tests (heel pricks), which his mother described him as not enjoying. He also had a sore area on his neck where the tape to his face goes.
In his final paragraphs the judge suggests that instead of resorting to court hearings there should be a private mediation provision to hear these cases.
As to legal costs - all the solicitors and barristers for the family and Charlie provided their time pro bono (for free). I suspect GOSH will have legal fees to pay.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Golden Key:
...were simply trying to help.
Whatever their motives, the outcome was a 6mth prolongation of futile suffering for Charlie, and emotional turmoil for his parents. Whatever their motives, the information they acted on was incorrect and their actions are profoundly unhelpful.
quote:
Originally posted by Golden Key:
One went so far as to call what the powers that be did "murder".
Trying to help?
Posted by Baptist Trainfan (# 15128) on
:
quote:
Originally posted by Curiosity killed ...:
The procedures that Charlie was undergoing to be kept alive included nasal suction to keep his lungs clear and other invasive treatments, including regular blood tests (heel pricks), which his mother described him as not enjoying. He also had a sore area on his neck where the tape to his face goes.
All of which (and what came above) begs the question of whether he was "alive" in any meaningful way at all - one which medics must be frequently required to ask.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by Golden Key:
Additional perspectives:
"Why Charlie Gard’s case is so disturbing to Americans" (STAT magazine of medical journalism).
The hypocrisy of that piece is impressive. Americans must be so sensitized by the millions of uninsured children and bankrupt parents that this one child reaching the edge of medical care has really disturbed them.
One particularly insightless moment was
quote:
In the American system, clinicians can decline to offer a treatment. They can decide, for example, not to resuscitate a patient or not to offer dialysis if they believe it will cause more harm than good...
...or if the patient doesn't have enough money or insurance. Much more ethical.
Posted by orfeo (# 13878) on
:
quote:
Originally posted by mdijon:
quote:
Originally posted by orfeo:
I'm fine with arguing it was pointless or futile, but describing it as harmful when the alternative is certain death takes some serious mental juggling.
What if it causes pain and suffering in the attempt?
My dentist causes me pain and suffering when she cleans my teeth.
I agree that causing pain and suffering when a treatment is futile is one more reason to not have the treatment. But pain and suffering in and of itself is not a reason to not have treatment.
Posted by orfeo (# 13878) on
:
Just flagging I am going to come back to CK's post, but it's not feasible on iPhone.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by orfeo:
I agree that causing pain and suffering when a treatment is futile is one more reason to not have the treatment. But pain and suffering in and of itself is not a reason to not have treatment.
Let me spell it out.
For Charlie;
a) the patient can't consent for himself.
b) the treatment is futile
c) the treatment causes pain and suffering.
When a), b) and c) are all met, the court has business getting involved.
For Orfeo's dental work;
a) the patient can consent for himself
b) the treatment is effective
c) there is a bit of pain, I would suggest considerably less than Charlie's potential suffering during the last 6 months.
Therefore the court has no business getting involved.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by mdijon:
I appreciate he has a prestigious position and has expertise in neurology, but his behaviour in this instance is quackery.
If it walks like a duck...
Phrasing this carefully, one can be a legitimate medical practitioner and dispense highly "questionable" advice.
quote:
Originally posted by mdijon:
The hypocrisy of that piece is impressive. Americans must be so sensitized by the millions of uninsured children and bankrupt parents that this one child reaching the edge of medical care has really disturbed them.
It is staggering that people who are actively attempting to take away health care from children it could actually help are pretending concern for Charlie Gard.
quote:
Originally posted by Golden Key:
"This man’s son tried the experimental treatment Charlie Gard’s parents want" (CNN Wire, via KFOR).
This was a different variation of the condition.
Posted by mdijon (# 8520) on
:
quote:
Originally posted by mdijon:
I appreciate he has a prestigious position and has expertise in neurology, but his behaviour in this instance is quackery.
If it walks like a duck...
quote:
Originally posted by lilBuddha:
Phrasing this carefully, one can be a legitimate medical practitioner and dispense highly "questionable" advice.
...and quacks like a duck...
Posted by Curiosity killed ... (# 11770) on
:
There is a whole section on Dr Hirano in the judgement on the Charlie Gard case. Both the quotations I gave above are included in that section, many paragraphs apart.
Posted by Bishops Finger (# 5430) on
:
Has anything yet been decided as to what is to be done with the money raised by crowdfunding?
BBC News, at least, has gone quiet - hopefully, out of respect for Charlie's family, who will, presumably, be holding his funeral very soon.
IJ
Posted by Curiosity killed ... (# 11770) on
:
That doesn't mean funeral plans are not all over other news outlets (the Evening Standard for one).
Apparently the money is to provide support for families dealing with similar genetic problems.
Posted by Bishops Finger (# 5430) on
:
Yes, I don't doubt that the (mainly) right-wing media feeding frenzy will continue until after the poor little chap's funeral. Common decency amongst such people seems to be unknown.
Hopefully the money raised will help those still battling with this condition.
IJ
Posted by Curiosity killed ... (# 11770) on
:
Before this thread slides off the bottom of the page, I am flagging this:
quote:
Originally posted by orfeo:
Just flagging I am going to come back to CK's post, but it's not feasible on iPhone.
because it hasn't happened yet.
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