Doctors can withdraw baby's life support

[ProfessorDavey]

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.

The court know that Prof Hirano hadn't seen Charlie - but while he was acting as an independent expert (one of many) that wasn't critical - on 6th July everything changed, when he said he would be prepared to treat Charlie. At that point the court decided that they could not accept this option as being in Chalrie's best interests until Prof Hirano had actually seen the patient.

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.

Where did I say that the court were investigating Hirano's conduct - I never did. What the court said was that they could not accept that an offer of treatment was in Charlie's best interests unless they were convinced that the Doctor making that offer had fully assessed the clinical condition of the patient - which would include having examined the patient and the relevant clinical history.

Hirano had not done that when he offered to provide treatment - the court then requested that he visit to make a proper assessment (which he had not done up to that point) - he agreed, visited and concluded that treatment was not in Charlie's best interests.

[Nearly Sane]

The court know that Prof Hirano hadn't seen Charlie - but while he was acting as an independent expert (one of many) that wasn't critical - on 6th July everything changed, when he said he would be prepared to treat Charlie. At that point the court decided that they could not accept this option as being in Chalrie's best interests until Prof Hirano had actually seen the patient.
Where did I say that the court were investigating Hirano's conduct - I never did. What the court said was that they could not accept that an offer of treatment was in Charlie's best interests unless they were convinced that the Doctor making that offer had fully assessed the clinical condition of the patient - which would include having examined the patient and the relevant clinical history.

Hirano had not done that when he offered to provide treatment - the court then requested that he visit to make a proper assessment (which he had not done up to that point) - he agreed, visited and concluded that treatment was not in Charlie's best interests.

And again I didn't say you had said it was an investigation. It's a point i have made a couple of times, since it is relevant to how we view how much information and for what purpose the court's statements are covering.

You now sem to be arguing that Hirano was wrong not to come to the UK to examine Charlie Gard before July the 6th, and that he didn't need to come till then because of what the court said.

[ProfessorDavey]

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?

Not entirely sure that is fair.

What I am more interested in is why he changed his mind about the potential effectiveness of the treatment from April to July. In the April judgement Dr I (whom we presume to be Hirano) said:

'Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encephalopathy 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.'

Then suddenly in July he changed his mind - having now offered to provide the treatment I don't think he could reasonably have refused to visit Charlie in the UK.

Worth noting too that Hirano was involved in providing expert opinion way back at the beginning of the year, long before the case had generated any meaningful publicity.

[ProfessorDavey]

And again I didn't say you had said it was an investigation. It's a point i have made a couple of times, since it is relevant to how we view how much information and for what purpose the court's statements are covering.

You now sem to be arguing that Hirano was wrong not to come to the UK to examine Charlie Gard before July the 6th, and that he didn't need to come till then because of what the court said.

I think he should have should have come to examine Charlie prior to offering the treatment. This seems to be the view of the court too, which is why they indicated that they wouldn't accept his opinion that treatment was in Charlie's best interests without the doctor potentially giving the treatment having seen the patient.

Not sure why this is so challenging for you to understand.

[Nearly Sane]

I think he should have should have come to examine Charlie prior to offering the treatment. This seems to be the view of the court too, which is why they indicated that they wouldn't accept his opinion that treatment was in Charlie's best interests without the doctor potentially giving the treatment having seen the patient.

Not sure why this is so challenging for you to understand.

What I am struggling with is what of anything I have written you think is somehow arguing against the above. I have simply been pointing out that I don't know enough of Hirano's overall involvement or understanding of his involvement over six months to properly judge much about him. Yes, it his actions seem odd to me but he wasn't being investigated so his side in that sense wasn't going to be put forward.

[floo]

Maybe not, so what?

So possibly it was more for getting his research publicised rather than helping Charlie Gard?

[Nearly Sane]

So possibly it was more for getting his research publicised rather than helping Charlie Gard?

Again so what?

[floo]

Again so what?

Well surely that wouldn't be to the chap's credit, especially if it got the parent's hopes up. 

[ProfessorDavey]

I have simply been pointing out that I don't know enough of Hirano's overall involvement or understanding of his involvement over six months to properly judge much about him.

You can find this out from the various court judgements and submissions which is why I summarised them. So now you know.

Yes, it his actions seem odd to me but he wasn't being investigated so his side in that sense wasn't going to be put forward.

Sure he was never being 'investigated' in an adversarial manner - he wasn't on 'trial'. But the moment he claimed that his experimental treatment would be in Charlie's best interest and that he would offer it, that claim did need to be investigated by the court.

[Nearly Sane]

Well surely that wouldn't be to the chap's credit, especially if it got the parent's hopes up.

Just because someone has nice motivatiibs doesn't make them right in mefical terms, just because they have selfish motivation doesn't make them wrong. 

[ProfessorDavey]

Well surely that wouldn't be to the chap's credit, especially if it got the parent's hopes up.

I think there is little doubt that the change of view by Hirano as to whether the experimental treatment might work did provide false hope for Charlie's parents. They said as much in their statement yesterday.

Why he did it, I cannot say, but it seems to me to have been ill advised, given that as soon as he came to the UK, met with the clinical team treating Charlie he reversed his opinion again.

[Nearly Sane]

You can find this out from the various court judgements and submissions which is why I summarised them. So now you know.
Sure he was never being 'investigated' in an adversarial manner - he wasn't on 'trial'. But the moment he claimed that his experimental treatment would be in Charlie's best interest and that he would offer it, that claim did need to be investigated by the court.

The claim, yes not his behaviour. And since the onvolvement over 6 months all that is being looked at are the medical aspects there is not going to be a discussio  of what Hiramo thougt were his obligations, or tge overall context of the involvement not rekevant to the medical decision.

[floo]

I think there is little doubt that the change of view by Hirano as to whether the experimental treatment might work did provide false hope for Charlie's parents. They said as much in their statement yesterday.

Why he did it, I cannot say, but it seems to me to have been ill advised, given that as soon as he came to the UK, met with the clinical team treating Charlie he reversed his opinion again.

Surely before coming to the UK he should have found out much more about the little lad's condition, if he really wanted to help him.

[Nearly Sane]

Surely before coming to the UK he should have found out much more about the little lad's condition, if he really wanted to help him.

Or indeed if he really wanted to look good after his involvement

[ProfessorDavey]

Surely before coming to the UK he should have found out much more about the little lad's condition, if he really wanted to help him.

I think before offering treatment implying it might help he should have both appraised himself of the full clinical records and also seen Charlie.

[floo]

I think before offering treatment implying it might help he should have both appraised himself of the full clinical records and also seen Charlie.

Of course he should.

I see that it is likely the child might be offered hospice care, although the parents are insisting he has all the necessary care staff at their home. However sad his case, the NHS should definitely not be expected to cater to his parents wishes, especially as there are so many other sick children whose parents would be entitled to the same treatment.

[Nearly Sane]

Of course he should.

I see that it is likely the child might be offered hospice care, although the parents are insisting he has all the necessary care staff at their home. However sad his case, the NHS should definitely not be expected to cater to his parents wishes, especially as there are so many other sick children whose parents would be entitled to the same treatment.

How many other children is"so many'?

[floo]

How many other children is"so many'?

NS you know as well as I do that there are other terminally ill children in this country. Their parents might like them to spend their last days at home if the staff to care for them were made available.

[Nearly Sane]

NS you know as well as I do that there are other terminally ill children in this country. Their parents might like them to spend their last days at home if the staff to care for them were made available.

Amd how many is that since you state there are 'so mamy'? How many do get home? How many don't? 

[Anchorman]

NS you know as well as I do that there are other terminally ill children in this country. Their parents might like them to spend their last days at home if the staff to care for them were made available.

Floo;
With respect; even were the staff and portable equipment (which costs a bomb) available, do you realise how much it would cost to offer the service to every parenrt whose child was in a similar situation?
You are talking about millions of pounds the NHS simply doesn't have.
Or are you willing to take a serious tax increase to cover the costs?

[floo]

Floo;
With respect; even were the staff and portable equipment (which costs a bomb) available, do you realise how much it would cost to offer the service to every parenrt whose child was in a similar situation?
You are talking about millions of pounds the NHS simply doesn't have.
Or are you willing to take a serious tax increase to cover the costs?

I think you have misread my post. I am saying the NHS can't possibly afford to pay for that level of care at home, if you do it for one you have to do it for all who wish it.

[Nearly Sane]

Floo;
With respect; even were the staff and portable equipment (which costs a bomb) available, do you realise how much it would cost to offer the service to every parenrt whose child was in a similar situation?
You are talking about millions of pounds the NHS simply doesn't have.
Or are you willing to take a serious tax increase to cover the costs?

To be fair to Floo, she is arguing the same as you are? But I would like to see some figures and proper analysis of what the numbers are in terms of a 'similar situation', rather than just assume that it is preventative. Note, I don't think that it will be allowed on the basis that it further increases suffering. If it is about costs, then theoretically the money raised could be used, and the couple seem to be seeking volunteers to care for the child.

[Rhiannon]

I'm not sure how many of the answers are on this website but there does seem to be some useful information.

http://www.togetherforshortlives.org.uk

[ProfessorDavey]

To be fair to Floo, she is arguing the same as you are? But I would like to see some figures and proper analysis of what the numbers are in terms of a 'similar situation', rather than just assume that it is preventative. Note, I don't think that it will be allowed on the basis that it further increases suffering. If it is about costs, then theoretically the money raised could be used, and the couple seem to be seeking volunteers to care for the child.

There is another aspect to this which is privacy.

While it might be tempting to think that their own home would provide the best chance for a quiet and private place to say goodbye, I think the huge levels of publicity will make this impossible. Sadly, I have concerns that were they to move the baby to their home the media circus and the hangers on will move too. Perhaps the best place is a hospice selected secretly, so that the press etc don't know where it is.

[Nearly Sane]

There is another aspect to this which is privacy.

While it might be tempting to think that their own home would provide the best chance for a quiet and private place to say goodbye, I think the huge levels of publicity will make this impossible. Sadly, I have concerns that were they to move the baby to their home the media circus and the hangers on will move too. Perhaps the best place is a hospice selected secretly, so that the press etc don't know where it is.

Good point, one can picture the photographers trying to get the first picture of the grieving parents.