Charlie Gard 12

[muckypup73]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

annandale I think he could only say that the treatment could be administered to Charlie. Not who should administer it.

I'd be interested in what legal types and docs on the thread think.

Tinsel, felt I should definitely answer you since you asked so nicely!!! Yes, the team transferring the child will generally withdraw the life sustaining treatment (so things like ventilation, blood pressure medications) before leaving (as the child will be on our transport ventilator and infusion pumps and stuff so we can't leave them with the child as they will be needed for the next patient). Any pain relieving/symptom relieving medications will be continued (generally changed to the hospice/community team's infusion pumps). The child may pass away quite quickly or may not, so there has to be a hospice team or community nursing team to take over care.

Because we have to get an extra team of staff to do these transfers we often try to use staff from the unit the child is on - this means the family aren't having to meet a whole new group of people at one of the most awful times of their lives.

Is there a precedent for a court ordering a hospital/doctors to give a treatment ?
I do not think the judge will order that but if they did and GOSH refused to do so, as they believed it was against Charlie's best interests, then what would happen ?
What could happen ?
Arrest the doctors for contempt of court ?
Bring in others to give the treatment?
Sounds extremely unlikely to me for so many reasons.
The judge will make a decision based on evidence from Dr H and GOSH.
If he is convinced by the evidence of Dr H (assuming Dr H still believes the treatment will work on Charlie) then he can rule that he can give it.
If he is convinced by GOSH's argument that it is not in Charlie's best interests (again assuming GOSH have not been swayed by Dr H) then surely he will rule for palliative care.
The problem will occur if he decides to give Dr H a chance but Charlie cannot travel to the US. AFAIK no others hospitals in the UK will take him.
It has the potential be be an even more complex case and, although I have full confidence in Judge F, I do not envy him his task.

magicdoll

Would an option for this case be a home transport team from another hospital with a PICU (since the relationship problems asociated with a team linked to GOSH) ?

The judge will also listen to what the Guardian has to say. I read somewhere the other day that she had been to visit Charlie and noticed significant deterioration.

i just cant see him ordering a hospital to give treatment that wouldnt even be licsensed here

Anyway, I've had so little time inwhich to catch u (hadn't even finished reading 11 last night, and will never catch up now!) that I've just scooted ahead. If I ask a stupid question that's beenne to death, just tell me what words to search on and I'll do it.

I saw that a bum fight was sadly missed - shame, I like the sound of it and a bunfight was averted, well done.

It seems to me that there are occasional forays on to these threads which seem to have the purpose to derail them and ultimately get them pulled. I, for one, shall search other CG threads on a poster's name to see if they've done it on other threads and if they have then I'll ignore them.

I see that my keyboard still hates me. I have had to correct almost every word in this post

Is there a precedent for a court ordering a hospital/doctors to give a treatment ?

They're giving treatment against their professional judgement today in the form of ventilation

Catching up with some of the above posts again- especially regarding what Dr Hirano may have said.
I hope Dr Hirano was brutally honest with CY at the meeting and told her his findings especially regarding the brain damage & also if he thought it was too late for Charlie to benefit from this experimental medication as would not reverse the epileptic encephalopathy. If he did I think that might be some form of closure for C&C as they atleast got their son an assessment form the 'MDDS specialist'. They seem to trust him and more likely to accept if coming from him.

I too have confidence that whatever ruling Judge Francis makes will be the right one for Charlie.

I think the "just"'issue with ca is because they fundamentally believe cy. Charlie is responsive, can see, is on a vent because of the medication gosh are giving, they won't remove him from the vent because it "would prove gosh wrong"

I have seen various posts about him giving dr hirano a smile, and "showing what he can do"

So i think when they say "just" let him go to the us, or "just" let him go home, i don't think they have the full picture to know what a massive undertaking that is.

One of them suggested a bag and mask if gosh did disconnect the vent. Complete with diagram. So they probably think cy, being a "medical expert", could "just" disconnect the vent and bag him all the way home in a taxi.

It still comes back to the family misleading on charlie's condition.

I just looked on FB For Laura Gard and saw her thunderclap about the SC judge. Someone had just commented 'But Charlie also has a right to die with dignity' - wondering how long before that person is booted out

I saw that too. The post has gone now. They are so in denial.

I hope Dr Hirano has explained to CY that Charlie will never be "a normal boy". I think he is the only person she might accept that from

@TinselTwins

Our transport teams cover a number of hospitals in our area of the country and so they are somewhat disconnected to the actual team looking after the babies on a daily basis, however, the accompanying medical and nursing team who would go with the transport team and the parents and would be the ones to withdraw the life support would always be the team who are involved in caring for that baby.

It's hard to say what would happen if Charlie was allowed home as I'm not sure what kind of team GOSH has in place but I would hope that the medical team and the parents would be able to come to some kind of agreement for the sake of Charlie, Connie and Chris as I think the whole family is going to need a lot of support

Good idea Jux I searched only two of them and got the feeling that was their intention.
Gabs while trying to sum up the situation as I see it I completely missed out your point that the medication is not licensed to be used here or in the US. The delay caused would make a complex situation even more complex and a potential decision even harder to make.

Jux, I'm in same boat as you, had been so far behind constantly trying to catch up. Not posted much as I'm afraid I'll be asking daft questions.
And yy to the derailing, I have the same feeling.

I have a feeling charlie will be moved to palliative care and treatment withdrawn before the judge makes a formal decision.

I am hoping c&c radio silence means they know the judges ruling already- he has told them, and is giving them this time.

That would solve many if the issues. If they just announce he has died, then GOsh/lawyers/judge aren't the baddies, and c&c are still sympathetic characters who never gave up.

Sorry wrong info Jux. I found two posters rather confrontational on other MN posts.

magicdoll I can't picture it "working" with anyone remotely associated with GOSH at this point. It's tragic that CGs last moments will probably be spent with CY and Chris feeling hostility and anger towards the people who are there with him

I always think of being with anyone and their families in the last moments of life as a privilege. In some ways like being there when someone is born. its a weird relationship, but it's briefly close and intimate.

Thank you to the posters upthread re Dr Hirano's expectations re treatment.

I guess I was looking at it solely from the point of success equalling improvement in Charlie's life quality as opposed to strictly 'clinical success', as it were.

I see your point Tinsel but isn't it a bit different, although obviously not ideal, to continue treatment he has already been receiving to giving untested medication with potentially serious side effects.

really I think to CA, GOSH will forever be the badies now.
Even if Charlie died before the court hearing, it would be because they had poisoned him with morphine, or whatever bullshit

@TinselTwins

I agree that I don't see it working and this is where my heart aches for them. If the judge does decide (which I think he will) to move Charlie to palliative care next week and Chris and Connie still don't agree then I worry that his precious last moments are spent in such a hostile environment which leaves Chris and Connie full of regret in years to come.

i dont think so reallynot

they dont seem to hav acceptd things at all thyere posting on trash tabloids sites etc how gosh dont want to be proved wrong theyre in complte denial

GOSH and parents sought an objective court decision to resolve their disapgreement, GOSH are as bound by the results as the family is. If the judge, having heard their professional reservations and evidence as put forward by their legal reps and having taken all possible advice overrules them they are bound to follow the order. I have no doubt in that scenario they would as they have continued to treat Charlie against their ethical beliefs as per their position state to all this time in respect of the court process,