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Source: (consider it)
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Thread: Medical treatment--who gets what, who decides, who pays?
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Golden Key
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# 1468
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Posted
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.
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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?" (Dragon, "Jane & the Dragon")
--"Oh, Peace Train, save this country!" (Yusuf/Cat Stevens, "Peace Train")
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Golden Key
Shipmate
# 1468
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Posted
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.
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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?" (Dragon, "Jane & the Dragon")
--"Oh, Peace Train, save this country!" (Yusuf/Cat Stevens, "Peace Train")
Posts: 18601 | From: Chilling out in an undisclosed, sincere pumpkin patch. | Registered: Oct 2001
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Golden Key
Shipmate
# 1468
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Posted
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).
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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?" (Dragon, "Jane & the Dragon")
--"Oh, Peace Train, save this country!" (Yusuf/Cat Stevens, "Peace Train")
Posts: 18601 | From: Chilling out in an undisclosed, sincere pumpkin patch. | Registered: Oct 2001
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Patdys
Iron Wannabe
RooK-Annoyer
# 9397
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Posted
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.
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Marathon run. Next Dream. Australian this time.
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simontoad
Ship's Amphibian
# 18096
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Posted
Nice post Pat. I think you've got it in one.
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Human
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Ricardus
Shipmate
# 8757
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Posted
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.
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Then the dog ran before, and coming as if he had brought the news, shewed his joy by his fawning and wagging his tail. -- Tobit 11:9 (Douai-Rheims)
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simontoad
Ship's Amphibian
# 18096
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Posted
law of guardianship is probably relevant. Know squat about it but.
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Human
Posts: 1571 | From: Romsey, Vic, AU | Registered: May 2014
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Gee D
Shipmate
# 13815
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Posted
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.
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Not every Anglican in Sydney is Sydney Anglican
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quetzalcoatl
Shipmate
# 16740
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Posted
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.
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I can't talk to you today; I talked to two people yesterday.
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
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Leorning Cniht
Shipmate
# 17564
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Posted
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 ]
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quetzalcoatl
Shipmate
# 16740
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Posted
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.
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I can't talk to you today; I talked to two people yesterday.
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
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BroJames
Shipmate
# 9636
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Posted
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 ]
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Leorning Cniht
Shipmate
# 17564
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Posted
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 ]
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Gee D
Shipmate
# 13815
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Posted
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 ]
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Not every Anglican in Sydney is Sydney Anglican
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Ricardus
Shipmate
# 8757
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Posted
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.
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Then the dog ran before, and coming as if he had brought the news, shewed his joy by his fawning and wagging his tail. -- Tobit 11:9 (Douai-Rheims)
Posts: 7247 | From: Liverpool, UK | Registered: Nov 2004
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
Posts: 12277 | From: UK | Registered: Sep 2004
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mdijon
Shipmate
# 8520
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Posted
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).
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
Posts: 12277 | From: UK | Registered: Sep 2004
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wild haggis
Shipmate
# 15555
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Posted
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.
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wild haggis
Posts: 166 | From: Cardiff | Registered: Mar 2010
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Jane R
Shipmate
# 331
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Posted
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.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Golden Key
Shipmate
# 1468
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Posted
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.
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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?" (Dragon, "Jane & the Dragon")
--"Oh, Peace Train, save this country!" (Yusuf/Cat Stevens, "Peace Train")
Posts: 18601 | From: Chilling out in an undisclosed, sincere pumpkin patch. | Registered: Oct 2001
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Jane R
Shipmate
# 331
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Posted
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 ]
Posts: 3958 | From: Jorvik | Registered: May 2001
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la vie en rouge
Parisienne
# 10688
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Posted
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).
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Rent my holiday home in the South of France
Posts: 3696 | Registered: Nov 2005
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Jane R
Shipmate
# 331
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Posted
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.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Boogie
Boogie on down!
# 13538
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Posted
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)
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Garden. Room. Walk
Posts: 13030 | From: Boogie Wonderland | Registered: Mar 2008
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la vie en rouge
Parisienne
# 10688
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Posted
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.
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Rent my holiday home in the South of France
Posts: 3696 | Registered: Nov 2005
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Doublethink.
Ship's Foolwise Unperson
# 1984
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Posted
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.
Posts: 19219 | From: Erehwon | Registered: Aug 2005
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Bishops Finger
Shipmate
# 5430
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Posted
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
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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)
Posts: 10151 | From: Behind The Wheel Again! | Registered: Jan 2004
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
Posts: 12277 | From: UK | Registered: Sep 2004
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quetzalcoatl
Shipmate
# 16740
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Posted
Some v. good posts here. So, under human rights' law, parental rights do not supersede children's rights in some situations?
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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romanlion
editorial comment
# 10325
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Posted
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...
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"You can't get rich in politics unless you're a crook" - Harry S. Truman
Posts: 1486 | From: White Rose City | Registered: Sep 2005
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quetzalcoatl
Shipmate
# 16740
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Posted
Ooh, out from under the bridge again.
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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Bishops Finger
Shipmate
# 5430
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Posted
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
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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)
Posts: 10151 | From: Behind The Wheel Again! | Registered: Jan 2004
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quetzalcoatl
Shipmate
# 16740
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Posted
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.
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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Bishops Finger
Shipmate
# 5430
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Posted
Oh, FFS....
![[Mad]](angryfire.gif)
IJ
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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)
Posts: 10151 | From: Behind The Wheel Again! | Registered: Jan 2004
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romanlion
editorial comment
# 10325
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Posted
Immediately after a troll reference aimed at me!
![[Killing me]](graemlins/killingme.gif)
Hilarious!
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"You can't get rich in politics unless you're a crook" - Harry S. Truman
Posts: 1486 | From: White Rose City | Registered: Sep 2005
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quetzalcoatl
Shipmate
# 16740
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Posted
It reminds me of Lewis's abject phrase: 'term's over, the holidays have begun'.
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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Bishops Finger
Shipmate
# 5430
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Posted
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
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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)
Posts: 10151 | From: Behind The Wheel Again! | Registered: Jan 2004
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quetzalcoatl
Shipmate
# 16740
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Posted
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.
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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Lyda*Rose
Ship's broken porthole
# 4544
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Posted
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?
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"Dear God, whose name I do not know - thank you for my life. I forgot how BIG... thank you. Thank you for my life." ~from Joe Vs the Volcano
Posts: 21377 | From: CA | Registered: May 2003
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quetzalcoatl
Shipmate
# 16740
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Posted
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.
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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Nicolemr
Shipmate
# 28
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Posted
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.
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On pilgrimage in the endless realms of Cyberia, currently traveling by ship. Now with live journal!
Posts: 11803 | From: New York City "The City Carries On" | Registered: May 2001
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quetzalcoatl
Shipmate
# 16740
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Posted
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.
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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Lyda*Rose
Ship's broken porthole
# 4544
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Posted
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?
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"Dear God, whose name I do not know - thank you for my life. I forgot how BIG... thank you. Thank you for my life." ~from Joe Vs the Volcano
Posts: 21377 | From: CA | Registered: May 2003
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quetzalcoatl
Shipmate
# 16740
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Posted
What about his trauma?
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I can't talk to you today; I talked to two people yesterday.
Posts: 9878 | From: UK | Registered: Oct 2011
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
Posts: 12277 | From: UK | Registered: Sep 2004
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mdijon
Shipmate
# 8520
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Posted
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.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
Posts: 12277 | From: UK | Registered: Sep 2004
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