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Post 12 Apr 2017, 7:57 pm

http://www.bbc.com/news/uk-england-london-39568388

This, to me, is frightening. The parents wanted to take the child to the US, but a UK judge said no, let the child die. I know it must have been a difficult decision, but was it right to have this be a judges' decision? The parents were not declared unfit, but their rights were usurped anyway. Is there back story to this, Danivon?
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Post 13 Apr 2017, 9:17 am

bbauska wrote:http://www.bbc.com/news/uk-england-london-39568388

This, to me, is frightening. The parents wanted to take the child to the US, but a UK judge said no, let the child die. I know it must have been a difficult decision, but was it right to have this be a judges' decision? The parents were not declared unfit, but their rights were usurped anyway. Is there back story to this, Danivon?


it's terrible.
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Post 14 Apr 2017, 4:26 pm

bbauska wrote:http://www.bbc.com/news/uk-england-london-39568388

This, to me, is frightening. The parents wanted to take the child to the US, but a UK judge said no, let the child die. I know it must have been a difficult decision, but was it right to have this be a judges' decision? The parents were not declared unfit, but their rights were usurped anyway. Is there back story to this, Danivon?

You can see the full decision here. http://www.mirror.co.uk/news/uk-news/ch ... l-10202972

I don't know much about the story, frankly. There is time for an appeal so it may get reversed. But the key to it is that the child has rights, and in cases like these there are advocates for his interests - parents do not "own" their children and have total right over them.

I think the real issue here is, unfortunately, that even if his underlying condition were cured, he is so badly brain damaged as a result of his illness that he will never improve. At least that seems to be the medical case - that the treatment would not reverse that damage to his brain, and so not improve the quality of life.

"The GOSH team believe that Charlie can probably experience pain, but is unable to react to it in a meaningful way. Their evidence was that being ventilated, being suctioned, living as Charlie does, are all capable of causing pain. Transporting Charlie to the USA would be problematic, but possible. Subjecting him to nucleoside therapy is unknown territory, for it has never even been tested even on mouse models, but it may (or may not) subject the patient to pain, possibly even to mutations. 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?

"It is with the heaviest of hearts, but with complete conviction for Charlie's best interests, that I find it is in Charlie's best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.
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Post 15 Apr 2017, 11:36 am

It seems to me there are two issues involved here: (1) to what extent can the State override the wishes of the parents with regard to medical care provided to the child because it decides the parents' medical decisions will harm the child, and (2) what is the effect of denying the parents their ability here to decide what medical care should be provided to their child. From what I can tell, there is little harm that would be done to the child by taking him to the US for treatment. That factor militates strongly in favor of letting the parents do it. With regard to the second issue, given the child's brain damage it does not appear treatment would make any difference but I think it does not much matter much here.

The default should be that parents control medical treatment with regard to their child. It is only when the facts are such that the child will suffer significant harm can the State step in to protect the child. But the State has no such interest here. The judge looked he made a good-faith decision as to what was best for the child...but that is not his decision to make unless there is a much stronger showing that what the parents plan to do will harm the child.

A bad ruling, particularly if the analysis it applied gets used in cases where it could have a greater impact.
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Post 15 Apr 2017, 11:50 am

That is exactly what I thought, Freeman. The State did not meet a standard to usurp a parents right to decide medical treatment options.
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Post 17 Apr 2017, 8:29 am

Why would medical practitioners attempt to intervene in the inevitable death of this child?

The very limited potential for improvement in quality or length of life, seems motivated only because there is an enormous profit to be made by the medical providers.

If there was no profit motive involved, would they be able to find medical practitioners willing to intervene?
In systems where medical care resources are out weighed by demand and unconstrained by the ability of the patient to pay , (most western nations) I think that intervention in a case like this would be infrequent to never.
However in the US, where resources are meted out by ability to pay, the motivation for a profitable course of treatment (not cure or even significantly effective treatment) makes the intervention possible.

Bbauska, if the money and resources that were to be expended in the nucleoside treatment were spent on indigent patients that might actually benefit to a significant degree by their treatment ... wouldn't that be a more ethical use of the resources?
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Post 17 Apr 2017, 9:32 am

In utilitarian terms your analysis would undoubtedly be correct, Ricky. But I don't think the issue of parental control of their child's medical care via-a-vis the State can be decided on a strictly utilitarian analysis because it runs up against the fundamental right that a parent has in deciding the welfare of their child which can only be outweighed by the State in certain compelling circumstances.

By the way, the parents had raised quite a bit of money to pay for the treatment. I am pretty sure they could have gone just about anywhere that had a suitable treatment. What may be true is that the reason the treatment was available in the US (remember, the parents were from Britain)was that we do have an open-ended demand side and there is a sort of cultural expectation that every ailment should be cured no matter how rare. It's not that the intervention would be problematic in a system with scarcer dollars put into health care and thus more of a emphasis on treatments that have more of an impact (i.e., can help more people), but the treatment would not be developed. If Britain had the treatment I have no doubt they would have tried it. I think it's safe to say that if you have a rare ailment...you are best off being in the US rather than in other western countries that will prioritize research into treatments that have more bang for the buck.
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Post 17 Apr 2017, 2:41 pm

freeman3
If Britain had the treatment I have no doubt they would have tried it
.
I'm not sure about that. The judgement that Danivon quoted considered whether it was appropriate to pursue the treatment, period.

"It is with the heaviest of hearts, but with complete conviction for Charlie's best interests, that I find it is in Charlie's best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.


freeman3
I think it's safe to say that if you have a rare ailment...you are best off being in the US rather than in other western countries that will prioritize research into treatments that have more bang for the buck
.
The EU and the US and Australia and Singapore all invest more money into research on treatments and cures for rare diseases. They call the drugs that might be developed orphan drugs.
These governments have all sweetened the pot for pharmaceutical companies to develop these drugs because the return isn't great if the potential market is very small. In fact much of the original research is funded directly by governments, in part because the research into a rare disease can sometimes help understand how more common diseases and conditions could be cured...

I think there's an ethical question here that I'd be interested in Bbauska considering... To what extent does one allow parents or even guardians of any patient to demand expensive treatment for limited potential results? Not only is it an issue of dying with dignity, it is an issue of prioritizing for the good of society.
The money that would be spent keeping this baby alive (and in pain) for a few months could be used to save thousands of Somali children starving to death. Put in those terms, with those two options, I wonder how many parents would choose to let their baby go quietly and spend the money raised to save starving children?
Its not so much a utilitarian argument so much as its an ethical argument. Do they really value the few months of limited life that their baby would have over so many who could be helped inexpensively?
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Post 17 Apr 2017, 4:58 pm

rickyp wrote:freeman3
If Britain had the treatment I have no doubt they would have tried it
.
I'm not sure about that. The judgement that Danivon quoted considered whether it was appropriate to pursue the treatment, period.

"It is with the heaviest of hearts, but with complete conviction for Charlie's best interests, that I find it is in Charlie's best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.


freeman3
I think it's safe to say that if you have a rare ailment...you are best off being in the US rather than in other western countries that will prioritize research into treatments that have more bang for the buck
.
The EU and the US and Australia and Singapore all invest more money into research on treatments and cures for rare diseases. They call the drugs that might be developed orphan drugs.
These governments have all sweetened the pot for pharmaceutical companies to develop these drugs because the return isn't great if the potential market is very small. In fact much of the original research is funded directly by governments, in part because the research into a rare disease can sometimes help understand how more common diseases and conditions could be cured...

I think there's an ethical question here that I'd be interested in Bbauska considering... To what extent does one allow parents or even guardians of any patient to demand expensive treatment for limited potential results? Not only is it an issue of dying with dignity, it is an issue of prioritizing for the good of society.
The money that would be spent keeping this baby alive (and in pain) for a few months could be used to save thousands of Somali children starving to death. Put in those terms, with those two options, I wonder how many parents would choose to let their baby go quietly and spend the money raised to save starving children?
Its not so much a utilitarian argument so much as its an ethical argument. Do they really value the few months of limited life that their baby would have over so many who could be helped inexpensively?


Ricky, on utilitarian grounds and for the good of society, why don't you empty out your bank account and send it to Somali children.
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Post 17 Apr 2017, 5:00 pm

Well, The treatment was not available in the UK do it's hard to say if the hospital would have tried the treatment or not. As for it being better if the money spent on medical treatment for the child would be better off going to someoone it could help...even if true that was the parent's decision to make, not the judge's. And we're also making the assumption that the baby's brain is so damaged that medical treatment cannot help him. Especially with a young child I am not sure how certain we can be of this.

The parents had the money to pay for it and the decision should have been within their purview. Your analyzing this in a utilitarian way as if we just add the good vs the bad in a decision and if the good outweighs the bad on the abacus then that's the way the decision should go. But here the issue does not yield to a utilitarian calculus; it's a deontological not utilitarian analysis as to who gets to decide whether the child gets further medical treatment or not. Parents are not apt to decide that their child is a fungible item to be compared equally with children in Somali. Fundamental rights don't get decided on the basis of whether it is thought their application is beneficial in a certain situation or not--they apply unless there are compelling state interests that justify intrusion on them. Here, there is no such compelling state interest.
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Post 17 Apr 2017, 5:02 pm

You made a better argument in 23 words RJ...than I did in trying to say the same thing in two paragraphs. Thanks for making me feel bad!
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Post 18 Apr 2017, 10:43 am

RickyP,
Sorry for the delay, busy evening...

Great questions. I do not think it is anyone's decision what to do with a child other than the parents, unless the parents have been declared unfit by a court of law. That being said, if the parents want to spend their money, time and effort on medical courses of action they feel are possible, so be it.

Who are you to say what is moral or ethical for everyone. Ethics are based upon one's own standards. I would not begin to say that my ethics are right for you. That is overbearing and rude. You cannot say that a person cannot spend their own money to try to save their child's life because it can be spent to a better purpose elsewhere. That is an intrusion that is wrong, over-reaching, and honestly, a bit scary.

What next? Grandma has cancer... The funds can be used to help a 30 year old more productive citizen. Hence, Grandma dies.

Bob is a CEO. He needs a new kidney. So does Jim, a homeless man. A perfect matched kidney comes available for one of the two people. It is a better use to help the CEO from your standards. It is better for the economy.

Have you ever seen Soylent Green? I suggest you watch it. Perhaps even learn from it. You are dangerously close to the "Utopian" world listed there. Perhaps Jonathon Swift's "A Modest Proposal". After all, selling impoverished children for food saves the stress on the parents, and could be a benefit for starving Somali children.

I do not advocate either. I just want a parent to be able to make the decisions for their child based upon the standards important in their life. The rest of the world's opinion be damned.
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Post 19 Apr 2017, 7:41 am

freeman3
And we're also making the assumption that the baby's brain is so damaged that medical treatment cannot help him. Especially with a young child I am not sure how certain we can be of this.

This is not an assumption. This is based upon the evidence provided.
I'll quote
Charlie suffers from the RRM2B mutation of MDDS. No one in the world has ever treated this form of MDDS with nucleoside therapy, although patients with a different strain, TK2, have received nucleoside therapy, with some recorded benefit. In mouse models the benefit to TK2 patients was put at 4% of life expectancy. There is no evidence that nucleoside therapy can cross the blood/brain barrier, which it must do to treat RRM2B, although the US doctor expressed the hope that it might do so. There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage. I dare say that medical science may benefit, objectively, from the experiment, but experimentation cannot be in Charlie's best interests unless there is a prospect of benefit for him.

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?


bbauska
What next? Grandma has cancer... The funds can be used to help a 30 year old more productive citizen. Hence, Grandma dies.


Medical practitioners go through this debate daily....with a great deal more nuance of course.
First: In emergent situations there's triage; deciding on where urgent care should go, and occasionally being forced to give up on a patient in order to be able save another...
In other circumstances it comes down to deciding which therapies or remedies to pursue both for a class of people and for individuals...
End of life decisions are always the hardest... And the notion that we must every effort to eke out another few weeks for Grandma, or who ever, is an expensive luxury...
Any debate about health care policy isn’t complete without adequately addressing its third rail—end-of-life care—and the financial stress it puts on the Medicare budget. Total federal spending on health care eats up nearly 18 percent of the nation’s output, about double what most industrialized nations spend on health care. In 2011, Medicare spending reached close to $554 billion, which amounted to 21 percent of the total spent on U.S. health care in that year. Of that $554 billion, Medicare spent 28 percent, or about $170 billion, on patients’ last six months of life (Pasternak, 6/3)
.

I don't know about grandma and her cancer.... but the case Bbauska has high lighted strikes me as
one where the parents have refused to accept the reality of the babies condition, and have appealed to strangers on the internet to pursue a course of action which will accomplish nothing but providing profit to a doctor and hospital and perhaps a little knowledge as their baby becomes a test subject for a medical experiment.

Rayjay
Ricky, on utilitarian grounds and for the good of society, why don't you empty out your bank account and send it to Somali children.

I suppose I could be more charitable. Perhaps we all could.
You could also try considering the question with less vitriol.There's more to this than the emotional pain of the parents to consider...

bbauska
Who are you to say what is moral or ethical for everyone. Ethics are based upon one's own standards. I would not begin to say that my ethics are right for you. That is overbearing and rude. You cannot say that a person cannot spend their own money to try to save their child's life because it can be spent to a better purpose elsewhere. That is an intrusion that is wrong, over-reaching, and honestly, a bit scary

In the case of medical costs, the money being spent isn't usually only from the parents pockets...
In most cases in the US, the insurance company would be resistant to underwriting the expense of a no hope experiment like this one. Ethically, they can't bankrupt their insurance pool in order to fund this kind of procedure.
In most other western nations the insurance pool is effectively the national health budget, and the responsibility for gauging which expenditures to pursue falls on insurance administrators as well.
Only the very wealthy are free of these constraints.
In the case of these parents, the Internet has provided them the freedom to indulge their wishes.

In most cases where there are limited resources ... there exists an ethical protocol independent of the issue of who's willing or able to pay the most.
Per your example
Bob is a CEO. He needs a new kidney. So does Jim, a homeless man. A perfect matched kidney comes available for one of the two people. It is a better use to help the CEO from your standards. It is better for the economy
.
Here's your answer...
Under the National Organ Transplant Act, organ transplantation in the United States is overseen by the U.S. Department of Health and Human Services (DHHS). Specifically, the Division of Transplantation (DoT), which is part of the Health Resources and Services Administration (HRSA), is in charge of a federal contract that established and maintains the national waiting list and distributes cadaveric organs fairly. This organization is called the OPTN (Organ Procurement and Transplantation Network) and the contract is currently held by the United Network for Organ Sharing (UNOS).
Organs are allocated (given) according to strict rules that take into account physical matching, tissue and blood type matching, medical criteria, waiting time, severity of illness, etc. The allocation system is blind to name, race, sex, and wealth. The allocation rules have been developed over many years of deliberation by physicians and other transplant professionals, transplant candidates and recipients, donor families, and representatives of the federal government. To review the policies refer to the Policy Management section on the UNOS website at http://www.unos.org
.

The UK court has made a decision that considers the babies interests..
The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child's best interests. The Great Ormond Street Hospital has made an application and it is my duty to rule on it, given that the parents and the hospital cannot agree on the best way forward.

In any other circumstance, besides for profit medicine, the limitations of available medical resources, or insurance funds, would also enter into the equation. And I can't see how that factor would have done anything but reinforce the decision of the court.
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Post 19 Apr 2017, 9:03 am

First off, you brought up the issue of money by saying that there are better uses for the money.

I used an example of a CEO vs a homeless person to not show wealth, but productivity. I understand the requirements for organ transplant as my father lived for 20 years with the heart of another person in his chest.

As for the point I am making about the whether or not the court should be allowed to have jurisdiction, I agree that they gave themselves jurisdiction. My point is why? It does not cost the state anything, as the parents got support from the charity of others. Why do the courts feel the need to usurp parental responsibility.

Should the State have a final say of the best interest in the child if the parents have not been found to be unfit?

Answer that.

BTW, thank you for the the compliment of not being nuanced. I call it succinct; so thank you.
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Post 19 Apr 2017, 9:25 am

rickyp wrote:There's more to this than the emotional pain of the parents to consider...


Now, with all due respect, I could hope to wring more compassion out of an insurance company executive than this sentence demonstrates. This is the cold, utilitarian thinking leftists accuse corporations of employing.