Doctors can withdraw baby's life support

[Rhiannon]

Some shocking stuff here about the US doctor, if accurate.

http://www.bbc.co.uk/news/uk-england-london-40712913

[Shaker]

Message boards are a form of social media, Shaker, so in the sense of using then and having administered more than 1, I don't see how you can say you aren't interested.

I've never thought of them as such, given they've been around so long (practically since the birth of the Web). I'd have thought that when people say social media they mean primarily Facebook, Twitter, Instagram etc. (SnapChat?) all of which are vastly more popular than message boards which we're often told are dying out in preference to (and because of) the aforementioned.

[Shaker]

Some shocking stuff here about the US doctor, if accurate.

http://www.bbc.co.uk/news/uk-england-london-40712913

Turns out chappy has financial interests in the experimental treatment (NBT?) he was offering.

[Nearly Sane]

I've never thought of them as such, given they've been around so long (practically since the birth of the Web). I'd have thought that when people say social media they mean primarily Facebook, Twitter, Instagram etc. (SnapChat?) all of which are vastly more popular than message boards which we're often told are dying out in preference to (and because of) the aforementioned.

I don't see declining popularity or their age as meaning they aren't social media. Here we are commenting as many do on this case, with people via an electronic medium with a group of disparate people and the comments on view to anyone on the net. Seems like social media to me.

[Nearly Sane]

Some shocking stuff here about the US doctor, if accurate.

http://www.bbc.co.uk/news/uk-england-london-40712913

I wonder if some of the shock is related to how the different health systems work. Doctors having financial interests in treatments they develop is common practice in the U.S. Now I understand the ethical questions that might be raised but they are ethical questions which the U.S. has decided on differently.

As to not reading the decision, I'm not sure that is particularly shocking. It's a legal decision and he's a doctor. I also think that given we have been covering an amount on here about fake news, that determining much of the truth from a single report here with no input from the doctor is unwise.

[Shaker]

I don't see declining popularity or their age as meaning they aren't social media. Here we are commenting as many do on this case, with people via an electronic medium with a group of disparate people and the comments on view to anyone on the net. Seems like social media to me.

It appears that one definition of social media is social networking, in which case Facebook is in and forums - at least this one - are out. In a few cases the real names and locations of posters are known, but this isn't generally the case and is accidental and incidental; personal contact between people known to each other isn't the raison d'etre of the forum (as it is with Facebook, for instance), which is to pass comment on a specific issue or range of issues.

[Nearly Sane]

It appears that one definition of social media is social networking, in which case Facebook is in and forums - at least this one - are out. In a few cases the real names and locations of posters are known, but this isn't generally the case and is acvidental and incidental; personal contact between people known to each other isn't the raison d'etre of the forum (as it is with Facebook, for instance), which is to pass comment on a specific issue or range of issues.

I think you are protesting a tad muchly but it's off topic in terms of the specific so I will leave it.

[SusanDoris]

It appears that one definition of social media is social networking, in which case Facebook is in and forums - at least this one - are out. In a few cases the real names and locations of posters are known, but this isn't generally the case and is acvidental and incidental; personal contact between people known to each other isn't the raison d'etre of the forum (as it is with Facebook, for instance), which is to pass comment on a specific issue or range of issues.

Interesting point about  identification of people on message boards and face book - I hadn't thought of that.

[floo]

I wonder how the parents of other children with serious illnesses being treated GOS feel about all the attention given to this child?

[Rhiannon]

I also think that given we have been covering an amount on here about fake news, that determining much of the truth from a single report here with no input from the doctor is unwise.

Hence 'if accurate'.

[Rhiannon]

I wonder how the parents of other children with serious illnesses being treated GOS feel about all the attention given to this child?

I doubt very much that they care about that. Much more likely they are bothered by the ongoing harassment of staff and the fact that their very sick children can't be treated (and possibly die) in peace because of the noise from the protestors outside the building.

[ProfessorDavey]

As to not reading the decision, I'm not sure that is particularly shocking. It's a legal decision and he's a doctor. I also think that given we have been covering an amount on here about fake news, that determining much of the truth from a single report here with no input from the doctor is unwise.

I'm not sure it is so much the issue of not having read the legal decision. More significant is that the doctor had not seen the child, nor had fully read the clinical notes and scan results. Yet he was indicating that the baby might benefit from the experimental treatment. This is officially reported in the court judgement, so one would hope not fake news.

Only in the last few days did Prof Hirano fully assess Charlie's condition and concluded that the experimental treatment would not be of benefit (and I gather could never have been of benefit as Charlie had suffered catastrophic and irreversible brain damage months ago).

[Nearly Sane]

I'm not sure it is so much the issue of not having read the legal decision. More significant is that the doctor had not seen the child, nor had fully read the clinical notes and scan results. Yet he was indicating that the baby might benefit from the experimental treatment. This is officially reported in the court judgement, so one would hope not fake news.

Only in the last few days did Prof Hirano fully assess Charlie's condition and concluded that the experimental treatment would not be of benefit (and I gather could never have been of benefit as Charlie had suffered catastrophic and irreversible brain damage months ago).

Even with it being a court report, it only shows the answers to the questions asked. It is insufficient knowledge to judge what happened in a period of ober six months, and what communications took place. It is not sufficient to know if the behaviour of the doctor was shocking or not.

[ProfessorDavey]

Even with it being a court report, it only shows the answers to the questions asked. It is insufficient knowledge to judge what happened in a period of ober six months, and what communications took place. It is not sufficient to know if the behaviour of the doctor was shocking or not.

I didn't describe it as shocking, but it is concerning:

'On 13 July he [Prof Hirano] stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.'

This from the court hearing yesterday and reporting on Prof Hirano's own testimony at an earlier hearing on 13th July. The last bit about not having read the Judge's decision seems the least important to me.

[floo]

I doubt very much that they care about that. Much more likely they are bothered by the ongoing harassment of staff and the fact that their very sick children can't be treated (and possibly die) in peace because of the noise from the protestors outside the building.

Good point!

[Nearly Sane]

I didn't describe it as shocking, but it is concerning:

'On 13 July he [Prof Hirano] stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.'

This from the court hearing yesterday and reporting on Prof Hirano's own testimony at an earlier hearing on 13th July. The last bit about not having read the Judge's decision seems the least important to me.

In this case it feels to me as if you have edited a post  to take out bits and then ignore what they were replying to, in order to create a strawman with which to argue. I suggest you reread the thread to see why I used the word shocking and why there isn't an implication that you used it. Further at no point have I implied that not reading the judge's decision was that important. In addition, you appear to have ignored the point about the court report not being an investigation into what happened over the six months involving this doctor. At no point have I said that there is nothing to be concerned about just suggested some caution on lack of context.

[SusanDoris]

My personal opinion, and I do not know if it is in any way right  or wrong, is that the couple could well be be/already are? considering themselves as celebrities. I do so hope they won't spend the next few months being interviewed on every TV station etc.

[floo]

http://www.bbc.co.uk/news/uk-england-london-40716292

Charlie Gard's parents want to take him home to die. I suppose the request will only be granted if it doesn't cause the poor little man any suffering.

[ProfessorDavey]

In this case it feels to me as if you have edited a post  to take out bits and then ignore what they were replying to, in order to create a strawman with which to argue. I suggest you reread the thread to see why I used the word shocking and why there isn't an implication that you used it.

You used the word 'shocking' in direct response to my comment where I didn't use the word - hence my point. If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.

Further at no point have I implied that not reading the judge's decision was that important. In addition, you appear to have ignored the point about the court report not being an investigation into what happened over the six months involving this doctor. At no point have I said that there is nothing to be concerned about just suggested some caution on lack of context.

Sure - but happy to answer that too, and details are contained in the court judgements.

So it is clear from the court judgement that Prof Hirano had provided input to the court hearings, both oral and written through the period from January -July. To quote:

'In the months between January and July, the Professor provided written and oral evidence for the best interests hearing in April and, after the Court decided that NBT was not in Charlie’s best interests, he went on to provide further written evidence for the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court.'

Indeed, you can see reference to him (albeit anonymised as Dr I) in the judgements from April onwards.

However in the hearing on 13th July he indicated that he had not appraised himself of the full clinical details of the case, albeit he had been given access to the information. To quote again:

'On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) ...'

So he was involved in the case throughout - until early July, although he hadn't actually appraised himself fully of the case (and certainly not seen Charlie), he was of the opinion that the experimental therapy would be of no benefit. He then changed his view on the basis of new research data, although he still hadn't read all the information. He then visited the UK discussed the case in detail with the clinical team (not sure he actually visited Charlie) and reverted back to his original view that the therapy could not help.

All that comes from the court Judgement and statements provided to the court.

[Nearly Sane]

You used the word 'shocking' in direct response to my comment where I didn't use the word - hence my point. If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.
Sure - but happy to answer that too, and details are contained in the court judgements.

So it is clear from the court judgement that Prof Hirano had provided input to the court hearings, both oral and written through the period from January -July. To quote:

'In the months between January and July, the Professor provided written and oral evidence for the best interests hearing in April and, after the Court decided that NBT was not in Charlie’s best interests, he went on to provide further written evidence for the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court.'

Indeed, you can see reference to him (albeit anonymised as Dr I) in the judgements from April onwards.

However in the hearing on 13th July he indicated that he had not appraised himself of the full clinical details of the case, albeit he had been given access to the information. To quote again:

'On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) ...'

So he was involved in the case throughout - until early July, although he hadn't actually appraised himself fully of the case (and certainly not seen Charlie), he was of the opinion that the experimental therapy would be of no benefit. He then changed his view on the basis of new research data, although he still hadn't read all the information. He then visited the UK discussed the case in detail with the clinical team (not sure he actually visited Charlie) and reverted back to his original view that the therapy could not help.

All that comes from the court Judgement and statements provided to the court.

. I see you didn't take my advice and reread the thread. I used shocking because it had been used by Rhiannon. Your reply was picking up my reply to Rhiannon, so I used it in the context of that. I didn't imply that you said it. Message boards are not simple one on one conversations.

The further details provided are still not based an investigation of the overall involvement of the doctor but of what is relevant to the decision as regards Charlie Gard. Is there prima facie evidence that some form of invetsyifayion would be useful (leaving aside the obvious impossibility of that happening here)? Borderline, I would suggest. It's simply not clear what the agreed involvement of the doctor was meant to be.

[ProfessorDavey]

. I see you didn't take my advice and reread the thread. I used shocking because it had been used by Rhiannon.

Indeed - hence 'If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.'

The further details provided are still not based an investigation of the overall involvement of the doctor but of what is relevant to the decision as regards Charlie Gard. Is there prima facie evidence that some form of invetsyifayion would be useful (leaving aside the obvious impossibility of that happening here)? Borderline, I would suggest. It's simply not clear what the agreed involvement of the doctor was meant to be.

The condition that Charlie has is incredibly rare, and therefore there are a tiny pool of worldwide experts who will all know each other via the academic community. GOSH engaged with that community to support them in coming to their view as to what was in Charlie's best interests. Further the court sought the expert input of members of that community (including Prof Hirano) throughout the 6 months of court hearings. Key clinical evidence was shared and Prof Hirano was invited to come to the UK to examine Charlie - only took up that offer last week.

Prof Hirano first indicated that treatment wouldn't help, then changed his mind in early July, and then reverted back to his first view in the last few days.

In terms of what involvement the doctor should have there are two stages - during the earlier period he was providing an impartial second opinion. But his involvement changed when he offered to treat - at that point he had a direct involvement and should only have proffered that view on the basis of sufficient clinical evidence. Not having seen the baby and not having appraised himself of the full clinical evidence doesn't meet those criteria in my view and also in the view of the judge.

'It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence'

[Nearly Sane]

Indeed - hence 'If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.'

My reply to Rhiannon who used the term was questioning whether it was shocking. In replying to you I was underlining that it was within that context that my reply was based. This is not 'ramping up the emotivrness' but contextualising what my reply was addressing. You appear to be struggling with the post being contextual in the thread.

[floo]

I wonder if Prof Hirano would have bothered to come to the UK at all if the Charlie Gard case hadn't had world wide publicity? 

[Nearly Sane]

The condition that Charlie has is incredibly rare, and therefore there are a tiny pool of worldwide experts who will all know each other via the academic community. GOSH engaged with that community to support them in coming to their view as to what was in Charlie's best interests. Further the court sought the expert input of members of that community (including Prof Hirano) throughout the 6 months of court hearings. Key clinical evidence was shared and Prof Hirano was invited to come to the UK to examine Charlie - only took up that offer last week.

Prof Hirano first indicated that treatment wouldn't help, then changed his mind in early July, and then reverted back to his first view in the last few days.

In terms of what involvement the doctor should have there are two stages - during the earlier period he was providing an impartial second opinion. But his involvement changed when he offered to treat - at that point he had a direct involvement and should only have proffered that view on the basis of sufficient clinical evidence. Not having seen the baby and not having appraised himself of the full clinical evidence doesn't meet those criteria in my view and also in the view of the judge.

'It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence'

And that opinion would seem to me to indicate that either the court had not established that Dr Hirano had seen Charlie Gard, or that they knew and ignored it. Either way it is a statement about what the court should do not Hirano.

It still doesn't address that the court was not investigating Hirano's conduct, nor does it make clear that there was any agreement to see Charlie Gard thst Hirano did not to, or that there was a full understanding by Hirano of what the requirements may or may not have been from the court.

[Nearly Sane]

I wonder if Prof Hirano would have bothered to come to the UK at all if the Charlie Gard case hadn't had world wide publicity?

Maybe not, so what?