Baby Charlie Gard's life

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Vash01

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http://www.cnn.com/2017/07/10/health/charlie-gard-new-hearing/index.html

I didn't see a thread about this. Sorry if this is a duplicate (Admins, please merge if it is).

I don't know how the UK law works, but on a human and humane level, I find it puzzling that courts are involved in this case. Charlie Gard was born with a rare genetic disorder (from what I read) and their parents want to do everything possible to prolong his life. That shouldn't surprise anyone. They want to take him to the US for experimental treatment and the hospitals are saying his life support should be discontinued.

Is this a financial issue? Is the British government paying for his hospital bills? Even if they are, how can they tell the parents that they should not follow whatever sliver of hope there may be to save their baby for - nobody can tell for how long. The doctors think it is best for the baby to die at this point. I am with the parents in this case. May be the experimental treatment will work, may be it won't but they will at least have the satisfaction of having tried their very best. I can't even imagine what they must be going through right now.

I am guessing that transporting the baby with special care will be very expensive, but if the parents can somehow find a way to do it, why not let them do it? Shouldn't it be the parents' choice if the life support of their baby should continue or not? I must not know how the UK system works, but speaking just as a human being, I think they parents should be allowed to do what they want, and the courts really should not make that decision. JMO of course.
 

Winnipeg

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Heard this discussed somewhere. A point was raised that if the table was reversed, say in the example where parents refuse health care for a sick child due to religious or other beliefs, everyone would government to intervene on behalf of the child. Maybe they believe the child is experiencing sever pain and that it is in the child's best interest to remain?

I don't have the answer, obviously this is a very difficult situation but thought I'd repeat what I had heard on the news.
 

Vash01

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Heard this discussed somewhere. A point was raised that if the table was reversed, say in the example where parents refuse health care for a sick child due to religious or other beliefs, everyone would government to intervene on behalf of the child. Maybe they believe the child is experiencing sever pain and that it is in the child's best interest to remain?

I don't have the answer, obviously this is a very difficult situation but thought I'd repeat what I had heard on the news.

But the situation is not reversed. That's the reality. I think the parents should have the right to try to save their baby's life, unless the government (or the hospital?) is paying for the treatment.

Again, I am saying this without knowing how the UK system works, so please forgive my ignorance. I am only thinking as a human being who feels sorry for the parents.
 
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MsZem

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It's not a financial issue; the parents have raised the funds for the experimental treatment on their own. To the best of my knowledge, the courts have repeatedly ruled against the parents because there is no evidence that this treatment is or would be effective. The case has gone all the way up to the European Court of Human Rights, which declined to hear it. It is a terrible and tragic situation for the family, but this is not about the relative merits of single payer vs. private health care; it's about deciding what is in the best interest of the child, and the courts believe that prolonging his life is causing him unnecessary suffering with no hope of recovery.

Charlie's mother, Connie Yates, was asked about what the money raised will be used for should they lose the case. Here's what she said:
We would set up a charity for mitochondrial depletion syndromes (there are others that are more common than Charlie's specific gene).

We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
It would be a beautiful way to commemorate their son, should it come to that.
 

Kasey

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I think it's difficult to make judgments on something such as this because the specific medical information that would indicate "viability" of life or not, and the current seriousness of the child's condition, is not available to the public (rightfully so). We had a similar situation at our hospital last year, where a 20 year old girl was brain dead on a ventilator (all tests proved brain death, certificate already signed) who remained that way for almost 9 months, as a "full code", because the family did not believe in brain death, and found an outside physician who shared their views. There were blog posts and gofundme sites about the case to support the family, and the misinformation, and "selected" information shared about the case was of course biased in the family's favor. There were periods where there were protesters at the hospital entrance, verbally attacking hospital staff as we tried to go in to work.

Just saying; we don't have all the information, and as such, I don't feel I have the right to make a judgment about this case.
 

Vash01

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I think it's difficult to make judgments on something such as this because the specific medical information that would indicate "viability" of life or not, and the current seriousness of the child's condition, is not available to the public (rightfully so). We had a similar situation at our hospital last year, where a 20 year old girl was brain dead on a ventilator (all tests proved brain death, certificate already signed) who remained that way for almost 9 months, as a "full code", because the family did not believe in brain death, and found an outside physician who shared their views. There were blog posts and gofundme sites about the case to support the family, and the misinformation, and "selected" information shared about the case was of course biased in the family's favor. There were periods where there were protesters at the hospital entrance, verbally attacking hospital staff as we tried to go in to work.

Just saying; we don't have all the information, and as such, I don't feel I have the right to make a judgment about this case.

I am sorry that you had to face the protesters, for no fault of yours.

Correct me if I am wrong- I thought a doctor or a hospital cannot force a family to remove life support, at least in the US?

From Zemgirl's post it sounds like the family has the money to seek treatment, but it is being blocked simply because there is no proof that it has worked in other cases. If we applied that to all experiments, medical or otherwise, there may not be much scientific progress. If it was my child or parent, I would want to do everything possible to save his or her life, even if it has not been done before.

JMO of course. You are right that we don't know everything about the case, and my knowledge is very limited in this case.
 
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MsZem

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There are rules and oversight for conducting scientific and medical experiments. It's not just about trying stuff and hoping something sticks. These mechanisms are in place to protect patients and make sure that they are not subject to dubious or unethical experiments. In this case:
A doctor in the US has offered the baby nucleoside therapy, which is an experimental drug treatment that has not been tested even in mice for the disease Charlie has.
I do social science research and have to submit a request to an institutional review board for every new project. The bar is much higher for medical research, and rightly so.
 

Spun Silver

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Why is it up to the government and not the parents to decide what is best for their child? Does the government love their child more than they do?
 
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MsZem

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Why is it up to the government and not the parents' to decide what is best for their child? Does the government love their child more than they do?
This is not about who loves Charlie more; of course nobody loves him as much as his parents do. It's about determining what is in his best interest. The hospital treating him contends - and his been backed by multiple courts - that prolonging Charlie's life is cruel, as there is no effective treatment for his condition and he is suffering unnecessarily.

Although, it is not unprecedented for the government to intervene on behalf of children. There are countries where parents are required by law to vaccinate their children, even if the parents are anti-vaxxers who believe it's not in the best interests of their child. Children are taken out of abusive or neglectful homes all the time, unfortunately. Obviously, the parents in this case aren't withholding treatment, they're not abusive or neglectful, but they do want to subject their child to medical treatment that the doctors and courts believe is not in his best interest.

As Kasey noted earlier, we do not know the full details of Charlie's medical condition - something that the ruling judges are presumably privy to. Without having this kind of information (which is none of my business) I wouldn't presume to say who has the right of it.
 

oleada

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Why is it up to the government and not the parents' to decide what is best for their child? Does the government love their child more than they do?

Children are not property; they have rights as well. Sometimes parents, despite having the best wishes, do not act in a way that is in the best interest of their child.

Per reports, Charlie has irreversible brain damage, and cannot breathe, eat or move on his own but it is believed that he can feel pain. He is not going to get any better. There is no evidence that the treatment in US will help. The hospital is arguing that it is in Charlie's best interest to move in toward palliative care entirely.

I feel for the parents; this is one of the worst things I can imagine happening to a parent. I certainly cannot imagine the pain they must be in. But it's time to let their son go. If Charlie were a puppy, not a baby, we would have allowed to die with dignity a long time ago.
 

Spun Silver

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Yes, the government often intervenes in the lives of children... often for the worse, as the foster care system frequently shows. But this is a life and death situation. These are parents who want nothing but to give their baby a chance to live. Back in the day when thr AIDS crisis was at its peak, ACT UP's slogan was "Get drugs into bodies." People were dying and had no other hope so they were desperate to get access to experimental treatments. Do we really want government and not loving families deciding when it's time to pull the plug?

A U.S. hospital is willing to give Charlie the experimental treatment that is his only hope. I have not read anything suggesting that the British government would have to pay a cent although a cost-benefit analysis was undoubtedly behind the original decision (they are now reconsidering) in a nationalized public health system where the government decides who gets what care.

This is a very slippery slope.
 

MsZem

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Do we really want government and not loving families deciding when it's time to pull the plug?

A U.S. hospital is willing to give Charlie the experimental treatment that is his only hope. I have not read anything suggesting that the British government would have to pay a cent although a cost-benefit analysis was undoubtedly behind the original decision (they are now reconsidering) in a nationalized public health system where the government decides who gets what care.
Do you have anything that actually backs that assertion? Or is it simply that you can't conceive of the courts disagreeing with parents about what is in the best interest of their child?

It is not "the government" that is deciding "when it's time to pull the plug"; it is Charlie's doctors who concluded that prolonging his life and subjecting him to (apparently dubious) experimental treatment was not in his best interest. The judicial system in the UK - also not "the government" - concurred. The European Court of Human Rights - also not "the government" - declined to intervene.

This case is not about government overreach to save money. And I have to say that any US politician who is actively engaged in trying to limit access to healthcare for American citizens, many of them the weakest and most vulnerable, has no business involving themselves in this case.
 

Spun Silver

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And do you think the Columbia-Presbyterian Hospital in NYC, the one that's offered to treat Charlie, is not on a par with British courts and doctors?

British doctors work for the government and the courts *are* the government. The clean distinction you want to draw is actually very blurry in a nationalized health care system. And if you expect me to believe that a government health care system's decision not to pursue last-hope, expensive efforts to keep a baby on life support alive has nothing to do with money, well, as we say in America, I have a bridge I'd like to sell you.
 

snoopy

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Money would always be a factor. If you are rich in America, you get all the health care you want. If you are poor, you don't. So the market serves as the government in making the same decisions for you. "The market" is not more fair in allocating resources.
 

skatemomaz

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And do you think the Columbia-Presbyterian Hospital in NYC, the one that's offered to treat Charlie, is not on a par with British courts and doctors?

British doctors work for the government and the courts *are* the government. The clean distinction you want to draw is actually very blurry in a nationalized health care system. And if you expect me to believe that a government health care system's decision not to pursue last-hope, expensive efforts to keep a baby on life support alive has nothing to do with money, well, as we say in America, I have a bridge I'd like to sell you.
Since the money to pay for the treatment has been raised by the parents, it would seem to me the cost of the treatment is likely not a factor in the decision.
 

Kasey

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Correct me if I am wrong- I thought a doctor or a hospital cannot force a family to remove life support, at least in the US?

One of the legal issues in the case I spoke of was, the family was keeping the patient full-code, full-treat (not to sound crass, but at the cost of MILLIONS of dollars, with almost 9 months on a ventilator, on antibiotics, on blood pressure drips, getting dialysis and other treatment), but the patient had already been declared brain dead. So the legal issue brought to light was, as the father had guardianship, what legal rights are there when it comes to someone who is essentially a corpse? Can you be a guardian of a dead person? It was an interesting ethical dilemma, for sure, and the family was quite volatile most of the time (and I can understand that, but not when you have me backed up to a wall rather than being able to treat your loved one). The girl in my anecdote was literally decomposing before our very eyes because of decreased circulation and ongoing pressor use; this other situation with this 11 month old is of course, nothing like it other than being a medical controversy. Sorry for the off-topic tangent. We have another ethical/medical situation going on in our critical care unit this past two weeks that is kind of wearying.
 

AxelAnnie

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One of the legal issues in the case I spoke of was, the family was keeping the patient full-code, full-treat (not to sound crass, but at the cost of MILLIONS of dollars, with almost 9 months on a ventilator, on antibiotics, on blood pressure drips, getting dialysis and other treatment), but the patient had already been declared brain dead. So the legal issue brought to light was, as the father had guardianship, what legal rights are there when it comes to someone who is essentially a corpse? Can you be a guardian of a dead person? It was an interesting ethical dilemma, for sure, and the family was quite volatile most of the time (and I can understand that, but not when you have me backed up to a wall rather than being able to treat your loved one). The girl in my anecdote was literally decomposing before our very eyes because of decreased circulation and ongoing pressor use; this other situation with this 11 month old is of course, nothing like it other than being a medical controversy. Sorry for the off-topic tangent. We have another ethical/medical situation going on in our critical care unit this past two weeks that is kind of wearying.
Thank you for the anecdote. I think this falls under "Just because we can doesn't mean we should."
 

MsZem

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And if you expect me to believe that a government health care system's decision not to pursue last-hope, expensive efforts to keep a baby on life support alive has nothing to do with money, well, as we say in America, I have a bridge I'd like to sell you.
Sure, much better to let insurers dictate medical care.

I come from a country with a public health system. It's not posh, and sometimes hospitals are so crowded that patients end up in the halls. But those who need treatment receive it, whether they are elderly Alzheimer's patients like my late grandmother, people with chronic conditions, preemies, or kids with late-stage cancer. My friend who made aliyah a few years back has stated more than once that she now has better healthcare for way less money than she ever did in the US. Life expectancy in Israel is among the highest in the world, and people don't go bankrupt due to medical bills.

I'm going to guess that you have no first-hand experience with any kind of national health system. Do you really believe the death panel nonsense?
 

oleada

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For clarification, the treatments that the parents want to take Charlie to do not offer any improvement. This has been stated by the doctor who would be providing the experimental treatment. At best, it would prevent further deterioration.

The question remains whether further intervention is in his best interest. At what point is further medical intervention cruel?
 

oleada

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I found the original judge's decision quite helpful:

https://www.judiciary.gov.uk/wp-content/uploads/2017/05/gosh-v-yates-and-gard-20170411-1.pdf

Some points:
- Charlie has severe brain damage; has no sleep/wake cycle, no spontaneous movement, no respiratory effort, does not open his eyes, is profoundly deaf and is completely ventilator dependent. They believe he can feel pain but cannot express reaction to it.
- GOSH was willing to apply for ethics permits for experimental treatments until Charlie suffered severe deterioration that made it, in their opinion, pointless.
- Leading expects from other hospitals in the U.K. and Spain were consulted and reached the same conclusion.
- The treatment has never been tried in this particular mutation, including in mice with similar mutations, and someone with brain involvement as severe as Charlie's would be contraindicated otherwise.

@allezfred, one of the points the judge made was about differing philosophies in Britain vs the US, and how in the US they'll try anything as long as there's money, regardless of the benefit. Atul Gawande spends a long time in his book talking about experimental treatments for terminal patients and the lack of value the US system places on quality of life, versus extending life at any cost, without taking into account the suffering said treatment can cause.
 
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Vash01

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One of the legal issues in the case I spoke of was, the family was keeping the patient full-code, full-treat (not to sound crass, but at the cost of MILLIONS of dollars, with almost 9 months on a ventilator, on antibiotics, on blood pressure drips, getting dialysis and other treatment), but the patient had already been declared brain dead. So the legal issue brought to light was, as the father had guardianship, what legal rights are there when it comes to someone who is essentially a corpse? Can you be a guardian of a dead person? It was an interesting ethical dilemma, for sure, and the family was quite volatile most of the time (and I can understand that, but not when you have me backed up to a wall rather than being able to treat your loved one). The girl in my anecdote was literally decomposing before our very eyes because of decreased circulation and ongoing pressor use; this other situation with this 11 month old is of course, nothing like it other than being a medical controversy. Sorry for the off-topic tangent. We have another ethical/medical situation going on in our critical care unit this past two weeks that is kind of wearying.

You have a tough job. Thank you for doing it.
 

NinjaTurtles

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What's actually stopping them from going to the US? Is it just a matter of the need to wait in the UK until able to leave? Or are the UK doctors unwilling to assist with a transfer regardless of cost?
 

caseyedwards

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I'm not comfortable with doctors ordering no further treatment being more important than parents desire for more treatment! The doctors say it's time for the child to die but parents don't want that. Parents should win.

What's actually stopping them from going to the US? Is it just a matter of the need to wait in the UK until able to leave? Or are the UK doctors unwilling to assist with a transfer regardless of cost?

This has been banned! It's totally off the table.
 
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Japanfan

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The doctors say it's time for the child to die but parents don't want that. Parents should win.

But part of the Hippocratic Oath is to 'do no harm'. Although it is not worded precisely like that in the oath. https://en.wikipedia.org/wiki/Hippocratic_Oath#cite_note-12

Another example of such a quandry is when a blood transfusion would save a life, but the family is Jehovah's Witnesses and doesn't believe in blood transfusions.

I found one case in which the court supported the hospital's decision to give a child a transfusion against the wishes of the family.

http://www.couriermail.com.au/news/...s/news-story/39297b4edd8838e641c1cf47a1361a53
 
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oleada

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What's actually stopping them from going to the US? Is it just a matter of the need to wait in the UK until able to leave? Or are the UK doctors unwilling to assist with a transfer regardless of cost?

They can't just unhook him and take him on a plane and go to the US - he'd die. This is total speculation on my part, but I imagine the hospital is not willing to facilitate what is likely a costly (both money and labour wise), complicated and risky transfer when it is not in the best interest of the patient. I can't imagine a plane ride being easy to tolerate for a patient in Charlie's condition.
 
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NinjaTurtles

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They can't just unhook him and take him on a plane and go to the US - he'd die. This is total speculation on my part, but I imagine the hospital is not willing to facilitate what is likely a costly (both money and labour wise), complicated and risky transfer when it is not in the best interest of the patient. I can't imagine a plane ride being easy to tolerate for a patient in Charlie's condition.

They've raised over a million dollars at this point, I'm guessing cost isn't this issue as much as it is an ethical stand.

One point I don't see mentioned is what him receiving the procedure would mean for research. That's really valuable data given it's a super orphan disease.
 

AxelAnnie

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They can't just unhook him and take him on a plane and go to the US - he'd die. This is total speculation on my part, but I imagine the hospital is not willing to facilitate what is likely a costly (both money and labour wise), complicated and risky transfer when it is not in the best interest of the patient. I can't imagine a plane ride being easy to tolerate for a patient in Charlie's condition.
I really don't know much about this. But, I would assume the parents have the power to transfer him to a different facility. And that somewhere in the world there are planes that are designed to pick up and transport gravely ill patients........ Don't they do that with the military?
 

caseyedwards

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But part of the Hippocratic Oath is to 'do no harm'. Although it is not worded precisely like that in the oath. https://en.wikipedia.org/wiki/Hippocratic_Oath#cite_note-12

Another example of such a quandry is when a blood transfusion would save a life, but the family is Jehovah's Witnesses and doesn't believe in blood transfusions.

I found one case in which the court supported the hospital's decision to give a child a transfusion against the wishes of the family.

http://www.couriermail.com.au/news/...s/news-story/39297b4edd8838e641c1cf47a1361a53
In this case the doctors don't think death is harm but the best thing but the parents are totally opposed and where's any compassion or understanding?

It's not about "winning"; the child is not a football. It is about what is best for the child.

Well in a court case there are always winners and losers. So that's just what that's about.
 
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