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Tags Charlie Gard , donald trump , health care incidents , health care issues , Pope Francis , UK issues

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Old 29th July 2017, 01:07 PM   #81
P.J. Denyer
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Originally Posted by epeeist View Post
I don't live in the UK so much less exposed to this story
Obviously....

I've agreed with many of your posts in the past and I know this case has been horrifically misrepresented in the media, especially in the US, so (and I don't intend to be patronising) I'd like to give you the benefit of the doubt.

This wasn't about money, Charlie Gard had some of the best pediatric doctors and facilities in the world, literally. Those doctors believed that all they were doing was extending his suffering. every doctor that examined his case in detail agreed.

His parents wouldn't accept this and as a result wound up being, frankly, used. By religious pro life, anti-socialised medicine, religious and political self interested parties and a doctor who thought he could get money, publicity and an ahead of schedule human trial on a non consenting baby with no downside (kid dies? what the hell, they called me in too late!). Let's be clear, he was telling desperate parents he had a 10% chance of success without examining the child or even reading his medical records or the findings of the previous court hearings.

The British Government had no say in the court's decision. The doctors weren't arguing against the cost of treatment, the Court wasn't deciding if his life was financially viable. The question was simply "Is continued treatment in Charlie Gard's interest?", the courts (British and European it should be pointed out) all agreed with the doctors (and independent medical experts called in to give second opinions) that no treatment would give him even a minimum standard of life and that he was very probably in pain with no way of expressing it. The court found that using him as a guinea pig for a treatment that no-one who had read is medical records (note, the doctor promoting the treatment HADN'T) believed would improve his condition wasn't in his interests.

As to him dying in hospital (he didn't, he was transfered to a hospice). Ask yourself how you would feel if you were blind, deaf, unable to move, and reliant on a ventilator to breath, absolutely unable to comprehend what's being done to you and someone, without your knowledge, wanted to move you and disconnect you from the machine that breaths for you, for a finite amount of time, so that you can die where they want you to after some kodak moments. Sorry if that sounds harsh, but it's true. The doctors wanted him in hospital so they had the most controlled environment to minimise his distress and pain.

The courts weren't there to represent the state, the doctors, the parents, pro lifers, Pope or Trump, they were putting themselves in Charlie Gard's shoes.

This has been a desperately sad case made much worse by ill informed, knee jerk reactions and deliberate distortion the facts, this is going to cause real harm, both to people now being vilified for spending their lives trying to save children's lives and reduce their suffering and through unwarranted distrust of medical professionals and reduced charitable donations to a truly great and altruistic organisation. Please don't be part of the problem, I know you're better than that.

Last edited by P.J. Denyer; 29th July 2017 at 01:48 PM.
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Old 29th July 2017, 01:40 PM   #82
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Originally Posted by P.J. Denyer View Post
This has been a desperately sad case made much worse by I'll informed, knee jerk reactions and deliberate distortion the facts, this is going to cause real harm, both to people now being vilified for spending their lives trying to save children's lives and reduce their suffering and through unwarranted distrust of medical professionals and reduced charitable donations to a truly great and altruistic organisation. Please don't be part of the problem, I know you're better than that.
Well said. It's crazy that people would believe that multiple doctors and other medical professionals and children's advocates would somehow not care enough about a sick child and their parents. Yet, as we've seen in this case and in similar cases before, there are people all too ready to buy into the idea that those in the medical community go out of their way to give up, and there always seem to be those who are sure they know better than the professionals, despite not being in any way involved in a particular situation.

Of all the reasons people decide to work in the medical profession, letting patients suffer and die when it could be prevented almost certainly doesn't make the top 100.
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Old 31st July 2017, 08:20 AM   #83
epeeist
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Originally Posted by Darat View Post
...

The parents and the hospital's case for their decision was weighed by several courts - not by any advocate, the courts were presented with all the medical details, all the ruled in favour of the hospital. There was no actual medical case based on clinical knowledge provided by the parents.

...
The parents at all times had access to every single piece of clinical data, the medical team went through all the scans with the parents prior to any court case.

Can you please name this "child advocate" and explain how they influenced the court's decision.


...


In the UK children have rights, I expect my courts to protect those rights. A parent is meant to always do what is in the best interests of a child, sadly sometimes emotions get in the way of parent's making the correct decision and sadly we end up having to go to a court to ensure the best decision for the child is made.
[portions only quoted]

Replying primarily to the parts where it's more straightforward.

Re child advocate, as is usual, the child had a lawyer appointed to represent the child's interests in court (i.e. the hospital and parents have their lawyers, this was a lawyer appointed to represent the best interests of the child). The fact that the child advocate is the head of an assisted suicide organization to me raises a significant ethical conflict of interest concern. That is, not intentionally, but unconsciously, what the child's lawyer sees as in or not in the child's best interests is filtered through their own biases, and when they are that heavily engaged in an advocacy position in another context (assisted suicide) that's the sort of thing that in a case like this raises significant concern that the child advocate is predisposed to see death as the preferred outcome, and to advocate for that in the child's best interests. Someone without such a bias might very well come to the same conclusion, but the point is that someone without such bias should have been in this role.

http://www.telegraph.co.uk/news/2017...charity-backs/

Re the surprise MRI, yes it was a surprise - though from this story (with details I'd not read before) it seems that because the MRI was available only a few minutes before court, the hospital's lawyer brought it up before the parents were informed. So not necessarily something to blame someone over, but still unfortunate timing.

http://metro.co.uk/2017/07/22/charli...-scan-6797992/

Re the last part, somewhat cynically but also realistically it seems that the UK while it makes some efforts does a piss-poor job at protecting brown-skinned children, so I was comparing the efforts and extent of litigation in this case with those situations.

Last edited by epeeist; 31st July 2017 at 08:22 AM. Reason: Quote problem
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Old 31st July 2017, 08:59 AM   #84
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Have you seen any statement by the lawyer acting as advocate for the child to suggest that she recommended anything that you would consider to not be in the best interests of the child?

So far I've seen no commentary anywhere that can point to anything that was advocated that was controversial. Just rumour and innuendo about her other roles.
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Old 31st July 2017, 10:44 AM   #85
epeeist
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Originally Posted by Worm View Post
Have you seen any statement by the lawyer acting as advocate for the child to suggest that she recommended anything that you would consider to not be in the best interests of the child?

So far I've seen no commentary anywhere that can point to anything that was advocated that was controversial. Just rumour and innuendo about her other roles.
Flip it around. Let's say Charlie Gard's lawyer was the head of a group that advocated that assisted suicide should not be allowed in the UK and that anyone assisting should be prosecuted for murder to the full extent of the law. If that lawyer then argued to the court that the child's best interests were in pursuing experimental treatment, would you be confident that there was no conflict of interest?

Because many people, not just for religious reasons, think that if there is a faint hope of benefit that that should be tried. Many people as adults choose to fight for life as long as possible despite severe pain. To say it's uncontroversial to advocate for death and against treatment would be to ignore the controversy involved in this matter.

Now, here the potential conflict is a bit more tenuous and complicated because there are sister organizations with shared staff only one of which advocates assisted suicide (for mentally competent adults), not the one she's head of which is a dying with dignity one. But it's still concerning in a way that it wouldn't be if she were the child advocate in e.g. a parental abuse case or a custody case or whatever.
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Old 31st July 2017, 11:16 AM   #86
P.J. Denyer
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I'm not sure what Victoria Butler-Cole's role in the process was from a practical point, the disagreement was between Charlie's doctors and his parents, the decision was made by the judge based on medical evidence and what HE considered best for the child. I haven't seen any reference to any statement made from Butler-Cole one way or another in the reporting of this case, much less that she directly influenced the outcome.

With regard the MRI scan, in the article given it says it was the second one that week and the parents were present for both of them. I am also sure that these two were the most recent of many, and given that it supported the diagnosis that GOSH made back in January the 'surprise' seems to be that they got there for the hearing rather than the contents.
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Old 31st July 2017, 01:03 PM   #87
epeeist
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Originally Posted by P.J. Denyer View Post
I'm not sure what Victoria Butler-Cole's role in the process was from a practical point, the disagreement was between Charlie's doctors and his parents, the decision was made by the judge based on medical evidence and what HE considered best for the child. I haven't seen any reference to any statement made from Butler-Cole one way or another in the reporting of this case, much less that she directly influenced the outcome.

With regard the MRI scan, in the article given it says it was the second one that week and the parents were present for both of them. I am also sure that these two were the most recent of many, and given that it supported the diagnosis that GOSH made back in January the 'surprise' seems to be that they got there for the hearing rather than the contents.
The judge was supposed to consider what was best for the child based on the evidence and argument from the parties and CG's lawyer. Obviously, the child's lawyer took a position as to what was in CG's best interests. Even if she said nothing, if she e.g. declined to argue against what the hospital argued, and declined to support the parents, that was in itself a form of advocacy in favour of the hospital. Obviously, if she had disagreed with the hospital's position and judge's order she would have spoken up and been quoted.

It's like in a custody case where there's a lawyer representing the child, if the court says e.g. "I'm inclined to grant full custody to the mother with no access by the father, subject to any concerns raised by the child's advocate" and the child advocate says nothing, they've advocated for that result, despite not having said anything quotable.
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Old 1st August 2017, 02:00 AM   #88
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Just to be clear. Victoria Butler-Cole was not the appointed Guardian for Charlie Gard. She was the barrister representing the Guardian in court. The Guardian is (as far as I can tell) unnamed, at the specific instruction of the Court. Her views and opinions are, largely, irrelevant. She was representing her client.
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Old 1st August 2017, 03:25 AM   #89
P.J. Denyer
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Originally Posted by epeeist View Post
The judge was supposed to consider what was best for the child based on the evidence and argument from the parties and CG's lawyer. Obviously, the child's lawyer took a position as to what was in CG's best interests. Even if she said nothing, if she e.g. declined to argue against what the hospital argued, and declined to support the parents, that was in itself a form of advocacy in favour of the hospital. Obviously, if she had disagreed with the hospital's position and judge's order she would have spoken up and been quoted.

It's like in a custody case where there's a lawyer representing the child, if the court says e.g. "I'm inclined to grant full custody to the mother with no access by the father, subject to any concerns raised by the child's advocate" and the child advocate says nothing, they've advocated for that result, despite not having said anything quotable.
I think you're putting your own interpretation on this case. The two sides of the argument were represented by CG's parents and doctors. His parentís lawyers were arguing against his life support being turned off, given that the point of the hearings was to establish what was in CG's best interest because he could not express consent it seems unlikely that her personal opinion would be of any interest to the court. The medical evidence was never in serious doubt, she couldn't interview CG and the decision was made within the law, what exactly was she supposed to add?

Do you disagree with the Court's decision?
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Old 1st August 2017, 04:41 AM   #90
Aepervius
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Originally Posted by epeeist View Post
Flip it around. Let's say Charlie Gard's lawyer was the head of a group that advocated that assisted suicide should not be allowed in the UK and that anyone assisting should be prosecuted for murder to the full extent of the law. If that lawyer then argued to the court that the child's best interests were in pursuing experimental treatment, would you be confident that there was no conflict of interest?

Because many people, not just for religious reasons, think that if there is a faint hope of benefit that that should be tried. Many people as adults choose to fight for life as long as possible despite severe pain. To say it's uncontroversial to advocate for death and against treatment would be to ignore the controversy involved in this matter.

Now, here the potential conflict is a bit more tenuous and complicated because there are sister organizations with shared staff only one of which advocates assisted suicide (for mentally competent adults), not the one she's head of which is a dying with dignity one. But it's still concerning in a way that it wouldn't be if she were the child advocate in e.g. a parental abuse case or a custody case or whatever.
You re judging the case on the person's background handling it (and as pointed repeatidely NOT the gaurdian) rather on that fact.

Think about it.

If that was about forum rule it would be called an ad hominem , arguying the arguer and not the argument.

You keep bringing up his advocacy in an utterly irrelevant manner.

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Old 1st August 2017, 06:54 AM   #91
bonzombiekitty
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Originally Posted by Information Analyst View Post

Not proven, but the US doctor has admitted a "financial interest" in the treatment components, which clearly is a conflict of interest. The treatment was being offered in the United States, and the doctors actually treating him did not think he could be safely moved.
Not to mention the doctor in question never even looked at Charlie's medical files (brain scans, other doctor's opinions, etc) until JULY. So how he could offer any projection of chance of improvement is beyond me.
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Old 4th August 2017, 01:30 AM   #92
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My take on this is that each side is a little bit right and a little bit wrong. Making the child a ward of court so that the parents could not take Charlie out of the country (without an -inevitable- long-winded court battle) is a case of the nannying state interfering in a parent choosing to do what is best for their child.

I believe the claim, 'Charlie is in pain' was brought in as a form of emotional blackmail.

Fact is, hospitals make the decision every day as to whom they will resucitate and whom not. Sometimes it is based merely on the age of the patient or the perception they are 'too disabled to enjoy life'.

Of course, medical opinion is important and should be listened to, but is not sacrosanct.

The parents were badly behaved - shouting in court and calling the guardian barrister 'evil' and 'a liar' - which didn't help their cause, but thankfully, the judge was understanding and took into account their fraught layman feelings.

Unfortunately, we do have individuals, usually in social services or a similar position, who have a condescending attitude towards their 'clients' and think nothing of making unfair custody representations and forcibly removing children from loving parents, simply because they can.

Whilst I didn't agree with Charlie being looked after privately at home by his parents after the life support was removed, surely there was a way of taking palliative care into the parents' home?

The message came across GOSH was in a battle of wills which they were determined to win, and had the power to do so. It is clear GOSH didn't trust the parents an inch and had little respect for them. Making an announcement they had received death threats and abuse from the public was all part of the emotional blackmail to defeat the parents.

In the end it was a matter of who would win the battle of wills and nothing at all to do with poor little Charlie.
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Old 4th August 2017, 04:37 AM   #93
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Originally Posted by Vixen View Post
My take on this is that each side is a little bit right and a little bit wrong.
...snip....
In the end it was a matter of who would win the battle of wills and nothing at all to do with poor little Charlie.
I refer you to answer given in the case of Darat versus uninformed opinion
http://www.internationalskeptics.com...9#post11937919
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