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Post 20 Apr 2017, 2:46 pm

Alas, it is the judge's decision to make.

To me, it is not a utilitarian case, but one of the rights of the child. Parental rights do not trump those, and should not.

The case, which the judge has accepted, is that the child's current condition is unsustainable and intolerable. And the parents agree with that. They want to try this experimental treatment. His doctors (and indeed the doctor who is looking to employ the treatment) say that while it might help the underlying condition, one of the main effects will not be reversed - namely the brain damage. If that is the case, then traveling to the US for the treatment, going through the treatment and waiting for the outcome may well give us more knowledge about whether the treatment works, but it would not "cure" him, or improve his quality of life.

Now, it could be that the treatment does work and that there is some reversal in the brain damage. But it sounds like a big gamble.

Actually, the utilitarian argument would be to let the treatment take place. He's likely to not be any better at the end of it, still brain damaged to the point of having a terrible quality of life, but we might get some useful data from the science.
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Post 20 Apr 2017, 4:37 pm

Yes, but who speaks for the child when the child has an inability to do so--the State or the parents? You go down a slippery slope when you decide that the State has the right to speak up for the child in cases where the parents are not doing anything (or failing to do something) that would result in significant harm. In my view, the parents have a right to decide issues with regard to the child's welfare unless there are compelling circumstances that require State intervention. That is missing here.

Note that in cases like divorce or child emancipitation the analysis would be different because there is a conflict between the interests of the child and the parents. Generally, you need an attorney to represent the child to advocate for their interests in those cases . One could imagine a case where a child and his/her parents differed on medical treatment. And again the analysis would be different.

Here, however, the issue is whether the parents can step in the shoes of the child and advocate for their interests. My position is that unless there is a conflict between the interests of the parent and child or the parents have done something or going to do something that is clearly unreasonable and beyond the pale of the very wide discretion we grants parents in making decisions with regard to the child's welfare, then the parent is the one who is entitled to advocate for the rights of the child. It's not parental rights trumping the rights of the child, but rather parents having rights via-a-vis the State with regard to making child welfare decisions. As noted, the analysis is different when the analysis concerns the child vs the parent, as opposed to the parent on behalf of the child vis-a-vis the State.
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Post 21 Apr 2017, 10:35 am

freeman3 wrote:Yes, but who speaks for the child when the child has an inability to do so--the State or the parents? You go down a slippery slope when you decide that the State has the right to speak up for the child in cases where the parents are not doing anything (or failing to do something) that would result in significant harm. In my view, the parents have a right to decide issues with regard to the child's welfare unless there are compelling circumstances that require State intervention. That is missing here.

Note that in cases like divorce or child emancipitation the analysis would be different because there is a conflict between the interests of the child and the parents. Generally, you need an attorney to represent the child to advocate for their interests in those cases . One could imagine a case where a child and his/her parents differed on medical treatment. And again the analysis would be different.

Here, however, the issue is whether the parents can step in the shoes of the child and advocate for their interests. My position is that unless there is a conflict between the interests of the parent and child or the parents have done something or going to do something that is clearly unreasonable and beyond the pale of the very wide discretion we grants parents in making decisions with regard to the child's welfare, then the parent is the one who is entitled to advocate for the rights of the child. It's not parental rights trumping the rights of the child, but rather parents having rights via-a-vis the State with regard to making child welfare decisions. As noted, the analysis is different when the analysis concerns the child vs the parent, as opposed to the parent on behalf of the child vis-a-vis the State.
Because the situation was that the parents were seeking to ignore the advice of his doctors, I think that is compelling reason to seek someone to advocate for the child separate from both the parents and the doctors. At least until you get a clearer view of what is going on. After all, what if the doctors wanted to operate but the parents refused on religious grounds?

They would be court appointed, or nominated by Social Services and would have to hire a lawyer for court representation. I think the thing is whether you see the State as a monolith or not. It is not. It isn't in the US, as you have different levels of government to start with, but you also have different areas which are silo'd. So, while the doctors will be NHS employees, they won't have any influence on the Judiciary any more than private doctors would in the USA.
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Post 21 Apr 2017, 11:32 am

danivon wrote:
freeman3 wrote:Yes, but who speaks for the child when the child has an inability to do so--the State or the parents? You go down a slippery slope when you decide that the State has the right to speak up for the child in cases where the parents are not doing anything (or failing to do something) that would result in significant harm. In my view, the parents have a right to decide issues with regard to the child's welfare unless there are compelling circumstances that require State intervention. That is missing here.

Note that in cases like divorce or child emancipitation the analysis would be different because there is a conflict between the interests of the child and the parents. Generally, you need an attorney to represent the child to advocate for their interests in those cases . One could imagine a case where a child and his/her parents differed on medical treatment. And again the analysis would be different.

Here, however, the issue is whether the parents can step in the shoes of the child and advocate for their interests. My position is that unless there is a conflict between the interests of the parent and child or the parents have done something or going to do something that is clearly unreasonable and beyond the pale of the very wide discretion we grants parents in making decisions with regard to the child's welfare, then the parent is the one who is entitled to advocate for the rights of the child. It's not parental rights trumping the rights of the child, but rather parents having rights via-a-vis the State with regard to making child welfare decisions. As noted, the analysis is different when the analysis concerns the child vs the parent, as opposed to the parent on behalf of the child vis-a-vis the State.
Because the situation was that the parents were seeking to ignore the advice of his doctors, I think that is compelling reason to seek someone to advocate for the child separate from both the parents and the doctors. At least until you get a clearer view of what is going on. After all, what if the doctors wanted to operate but the parents refused on religious grounds?

They would be court appointed, or nominated by Social Services and would have to hire a lawyer for court representation. I think the thing is whether you see the State as a monolith or not. It is not. It isn't in the US, as you have different levels of government to start with, but you also have different areas which are silo'd. So, while the doctors will be NHS employees, they won't have any influence on the Judiciary any more than private doctors would in the USA.

1. Doctors are not always right. In fact, that's the whole point of second opinions. In fact, medical error is one of the leading causes of death. In this case, "ignoring the advice"--does that equal "ignoring the only medically-acceptable course of action?"

2. In the US, there would be a court-appointed representative for the child IF it could be determined that the parents were not acting in the best interests of the child. No court should determine that without a full and fair hearing.
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Post 21 Apr 2017, 12:44 pm

fate
2. In the US, there would be a court-appointed representative for the child IF it could be determined that the parents were not acting in the best interests of the child. No court should determine that without a full and fair hearing


And how exactly is this different than what occurred in the UK?

Freeman3
In my view, the parents have a right to decide issues with regard to the child's welfare unless there are compelling circumstances that require State intervention

we agree.

freeman3
That is missing here

we disagree.

I think the parents are ignoring the best advice and being lead on by a medical profiteer offering false hope.
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Post 21 Apr 2017, 2:08 pm

Analytically, the court should have proceeded in two steps: (1) Should the hospital or the parents decide what was to be done with regard to medical treatment, and then (2) if the decision was taken out of the parent's hands what was the best thing to be done for the child. Here, the judge just decided to go to step two without starting with step one. And now you are retrospectively seeking to show that step one was done. But that's not what the judge did--all he did was assess what was in the best interests of the child. But even if you find his analysis reasonable, you first need to hold that the parents should be stripped of their right to make the decision regarding medical care. You could find his decision reasonable and find he should have deferred to the parents. In fact, I would so find.
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Post 22 Apr 2017, 7:31 am

Doctor Fate wrote:1. Doctors are not always right. In fact, that's the whole point of second opinions. In fact, medical error is one of the leading causes of death. In this case, "ignoring the advice"--does that equal "ignoring the only medically-acceptable course of action?"
I know that. This is why it is appropriate that the doctors did not get the final say, and that evidence from the doctor who promotes the experimental treatment was heard. In the UK medical error in the NHS is linked to c.40k deaths a year. However, usually this is where there is a life-threatening condition to begin with, and so it is hard to say how many of those would have lived if treatment had been carried out correctly. Also, mistakes and errors are not the same as opinion.

And there wasn't one "only medically-acceptable course of action here". The issue was not medical, but quality of life. Whatever happened, this poor little kid is going to be brain damaged and need constant intervention for the rest of his short life.

2. In the US, there would be a court-appointed representative for the child IF it could be determined that the parents were not acting in the best interests of the child. No court should determine that without a full and fair hearing.
That is kind of what happened here - the case was about what is best for the child. But to have the child only represented by his parents could be a conflict of interest in such a process.

[quote="freeman2Analytically, the court should have proceeded in two steps: (1) Should the hospital or the parents decide what was to be done with regard to medical treatment, and then (2) if the decision was taken out of the parent's hands what was the best thing to be done for the child. Here, the judge just decided to go to step two without starting with step one. And now you are retrospectively seeking to show that step one was done. But that's not what the judge did--all he did was assess what was in the best interests of the child. But even if you find his analysis reasonable, you first need to hold that the parents should be stripped of their right to make the decision regarding medical care. You could find his decision reasonable and find he should have deferred to the parents. In fact, I would so find.[/quote]I get what you are saying, but it seems prescriptive and could result in perverse situations. If what the parents want is against the child's interests, then should they get to decide? And how can you determine that without an evaluation of some kind of what the options are and where their preference compares?

eg: If you had parents who wanted to stop all treatment on religious grounds, and they were completely cogent and otherwise caring for the child, but the medical options were for treatment that had a good chance of saving their life or improving their quality of life, what would step (1) do without a view on the preference they hold?
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Post 22 Apr 2017, 8:31 am

I'll give an example where a parent's wishes could be overridden. The child of parents who are Jehovah Witnesses need a blood transfusion to save their life. The parents refuse. I think in that situation their wishes could be overruled by the State. What would be the basis? Here is my standard: if a parent's wishes regarding medical care is both unreasonable under medical and/or societal norms and it would result in serious harm or death to the child then the State could intervene. However, I don't think the State could intervene to force the parents of a Jehovah's Witness to allow their child to give blood. Why? Because there the child would not suffer serious bodily injury or harm.

Here, I am not even sure the parents' decision is objectively unreasonable and the harm to the child seems minimal at best if the parents are allowed to try the treatment. Therefore, their wishes should be respected. We need to have clear standards when the State can override a parent's wishes with regard to medical care. I am interested to see if either Ricky or Danivon can identify a legal standard that would justify intervention in this case that could be applied generally.
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Post 24 Apr 2017, 9:21 am

freeman3 wrote:I'll give an example where a parent's wishes could be overridden. The child of parents who are Jehovah Witnesses need a blood transfusion to save their life. The parents refuse. I think in that situation their wishes could be overruled by the State. What would be the basis? Here is my standard: if a parent's wishes regarding medical care is both unreasonable under medical and/or societal norms and it would result in serious harm or death to the child then the State could intervene. However, I don't think the State could intervene to force the parents of a Jehovah's Witness to allow their child to give blood. Why? Because there the child would not suffer serious bodily injury or harm.


Spot on.

I can think of another example: some "Christians" believe God always answers prayers in the affirmative sense, so they would believe that if they pray, God will heal their child. If the child has a treatable condition, the State should intervene rather than let the clear negligence of the parents kill the child.

However, the default position of the State must be that NO ONE has more of an interest in the well-being of a child than his/her parents. Period. Full stop.
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Post 24 Apr 2017, 1:13 pm

freeman3
We need to have clear standards when the State can override a parent's wishes with regard to medical care

We do. This is not new territory. Usually, the courts are acting to protect the child because the parents are denying medical treatments... In that case..

When attempting to declare a given medical treatment decision inappropriate, the state has a high burden of proof because of the great value placed on autonomous parental decision making. The court must weigh the rights of a parent against the interests of the child. One important factor in this process is the expected outcome of the illness or disease: if the proposed medical treatment has a good chance of success and the predicted outcome without treatment is death, courts are more likely to intervene and overrule parental decisions; if the proposed medical treatment does not have a high likelihood of success or the predicted outcome is not death, courts frequently uphold the decision of parents. Generally, it is only when the child’s life is at risk that the weighing of interests favors the child and the government authority that is asserting the child’s rights.


http://journalofethics.ama-assn.org/200 ... -0610.html

The inverse is occurring in this case. Rather than withhold treatment that might benefit the child, the parents want to attempt a medical experiment, that has no chance of a positive outcome...
The state is acting in the interests of the child because the parents wishes will only result in pain, and suffering.
The burden of proof should be on the parents, and the US doctor, to offer evidence that the pain and suffering that their experiment will put the child through, should have a reasonable expectation of benefiting the child. They cannot.
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Post 25 Apr 2017, 8:16 am

rickyp wrote:The inverse is occurring in this case. Rather than withhold treatment that might benefit the child, the parents want to attempt a medical experiment, that has no chance of a positive outcome...


You know this to a mathematical certainty?
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Post 26 Apr 2017, 9:00 am

freeman3 wrote:I'll give an example where a parent's wishes could be overridden. The child of parents who are Jehovah Witnesses need a blood transfusion to save their life. The parents refuse. I think in that situation their wishes could be overruled by the State. What would be the basis? Here is my standard: if a parent's wishes regarding medical care is both unreasonable under medical and/or societal norms and it would result in serious harm or death to the child then the State could intervene. However, I don't think the State could intervene to force the parents of a Jehovah's Witness to allow their child to give blood. Why? Because there the child would not suffer serious bodily injury or harm.

Here, I am not even sure the parents' decision is objectively unreasonable and the harm to the child seems minimal at best if the parents are allowed to try the treatment. Therefore, their wishes should be respected. We need to have clear standards when the State can override a parent's wishes with regard to medical care. I am interested to see if either Ricky or Danivon can identify a legal standard that would justify intervention in this case that could be applied generally.
I am not totally cognizant of nucleoside bypass therapy or the side effects - I do know that it is still experimental and has not been used on a patient with Charlie Gard's specific condition or in as severe a state as he already is. To get the treatment he would have to travel to the USA as well. I don't think it is easy to claim there is minimal risk of harm "at best" if the treatment were to go ahead.

This case looks to be very difficult to call, and I don't know that the outcome is the best one (and unlike Ricky I am not going to make claims that I have no evidence of), but I think I have already outlined a legal standard for the case being heard, and for the child to have a legal presence apart from his parents - that they want to do something against the medical advice. The "norm" for this condition (if you can have a "norm" for a condition only 16 people have ever been identified as having) seems to be to manage it, especially with the brain damage. The decision comes down to quality of life, which is different from length of life.
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Post 26 Apr 2017, 9:28 am

Well, your standard sounds reasonable but what does going against medical advice mean? I'm sure doctors will disagree on what to do in a lot of medical situations, would disagree on the chances of medical treatments working, etc. There might be majority opinions in the medical community as to what to do with minority positions or even third options. I have done medical malpractice cases and most of the time---unless the error is egregious--there are well-qualified experts willing to give opposing opinions on whether a doctor met the standard of care and/or whether the error caused harm to the patient. So I don't think going against medical advice is enough. The medical treatment sought by the parents would need to be wholly without support in the medical community. If parents can find legitimate support in the medical community for the treatment why should their ability to choose it be denied because they happen to be treated by a medical provider who does not subscribe to that treatment?
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Post 27 Apr 2017, 8:22 am

freeman3
The medical treatment sought by the parents would need to be wholly without support in the medical community.


This is what we have to go on.... The part I bolded was the US doctor .
The part underlined was the conclusion from the judge specifically saying that there was unanimity on the fact that the treatment would NOT reverse structural brain damage.
So...wholly without support.

"I was aware that I was to hear evidence from the doctor in the USA who was, reportedly, offering what had been referred to as pioneering treatment. Before he gave evidence, I encouraged the treating consultant at GOSH to speak with him, which she was able and willing to do. I am truly grateful to these experts for the time that they have given to this case. The outcome of that discussion is illuminating and the doctor in the USA said the following:
'Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encelopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely....
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
.
The only medical practitioner willing to do the procedures is one who would personally profit.
And he doesn't offer any genuine hope for improvement.
If he weren't going to personally profit, would he still be willing to proceed?
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Post 27 Apr 2017, 9:18 am

rickyp wrote:freeman3
The medical treatment sought by the parents would need to be wholly without support in the medical community.


This is what we have to go on.... The part I bolded was the US doctor .
The part underlined was the conclusion from the judge specifically saying that there was unanimity on the fact that the treatment would NOT reverse structural brain damage.
So...wholly without support.

"I was aware that I was to hear evidence from the doctor in the USA who was, reportedly, offering what had been referred to as pioneering treatment. Before he gave evidence, I encouraged the treating consultant at GOSH to speak with him, which she was able and willing to do. I am truly grateful to these experts for the time that they have given to this case. The outcome of that discussion is illuminating and the doctor in the USA said the following:
'Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encelopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely....
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
.
The only medical practitioner willing to do the procedures is one who would personally profit.
And he doesn't offer any genuine hope for improvement.
If he weren't going to personally profit, would he still be willing to proceed?


Is "unlikely" a scientific certainty?

Hint: that is a "yes" or "no" question.