Issues raised by the CG case 11

[Venusflytwat]

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):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

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

June 2017 Supreme Court decision:

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

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

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

I dont think the Judge would do that unless the Guardian opposed it perhaps.

Of course the judge could say no. It's up to him and him only to make the decision about what's in Charlie's interests: the medical evidence is simply there to guide him, no more than that. The only way I'd see that happening though is if the Guardian was also against the treatment. But I can't see why they would be, if the doctors all were of the opposite view.

So it's theoretically very much a possibility, but practically unlikely. It would be difficult to justify and very much open to appeal.

I wonder how the CA will react if the American Doctor and GOSH Doctors both say they think the treatment may be worth trying but the Judge still says no.

Do you think a Judge would actually do that though?

Yes I do. If the US doc thinks that the meds will have an effect on Charlie at a cellular level. But others argue that those cellular changes will not improve Charlie's existence overall, then surely the judge can still so no?

After all, the US doc is one witness, not the man from delmonte.

Could he not put time limits on it? E.g. ONE round of meds, if not successful then no more attempts ever.

I'm sure I read somewhere that the drug is actually added to his feed and they wouldn't be able to assess if there was an improvement until at least three months of him having the treatment.

I don't know how accurate this is though as I'm reading all sorts in various papers and on differing websites. It's so hard to know what the truth is isn't it?

NellieBuff This is over legality of administering an in development medication. AZT got FDA approval to be used in trials for HIV patients, Dr Hirano does not have FDA approval to be using nucleosides on a child with RRM2B MDDS. He has it for trials on TK2 MDDS.

FDA approval =/= Ethical approval. FDA requires proof that it is safe and that it works (difficult to do, without proof it crosses BBB). Ethics requires proof that it is ethical to trial. Two different arms, and he has neither secured. This is a fools errand unless he's made moves for either.

I'm just curious as to how long it could realistically take for treatment to start if the Judge does give permission to go ahead?

The Judge could give permission for Charlie to have the treatment as soon as it's available, but that wouldn't have any impact on the ethics committee process, any licensing necessary etc. He wouldn't have the power to bind a GOSH ethics committee. Judges can't decide a child is going to have medical treatment if it isn't yet available, and it effectively isn't at this point.

The only thing that could in theory happen straight away, I think, would be Charlie going to the US. Or another country for treatment.

jinglejanglejobs Which part of I am not getting into a bun fight was unclear

Good night to everyone else though.

I'm sure I read somewhere that the drug is actually added to his feed and they wouldn't be able to assess if there was an improvement until at least three months of him having the treatment.
Then that would count as one round of treatment wouldn't it?

The therapy is very promising in itself. It's going to be devastating for C&C in a few years time when this treatment is further along, and administered early enough to work, and there are survivors growing and thriving.
I know an older woman who lost a child to something that would have been easily treated has the child been born a decade later - it made the heart break of losing a child 10 times worse to see how easily children were treated and recovered for the rest of her life.

It really is tragic.

I'm just curious as to how long it could realistically take for treatment to start if the Judge does give permission to go ahead?

It could take well over a month. It's a legal minefield and that doctor won't be risking having his licence whipped away.

It could take well over a month. It's a legal minefield and that doctor won't be risking having his licence whipped away.

I wonder if that may be taken into account when making the decision. A month is a long time in which Charlie is likely to deteriorate further whichever I imagine would then make his chances of any significant improvement even lower?

The whole thing is just so sad and complicated. I honestly don't know how his poor parents are coping.

Its OK saying docs might all agree to give it a shot (which I would be very surprised at) but the judge will ask how long to get a result 3-6 months? He won't agree to that long unless the doctors can say unequivocally charlie is not in pain, that ventilation will not damage his organs for that length of time more than they are already damaged. That the amount of brain damage won't deteriorate more than what it is and what extent is it? (Remember you cannot mend brain cells that are damaged or dead). Also will Charlie's fits continue with the likelyhood of further brain damage. The brain issue is oh so important. And finally evidence of real improvements expected. I.e off the ventilator, will he be able to sit up etc. No there will be loads if things to consider. Glad I'm not the judge.

for the judge to ovrule his prvious decision hed hav to be 100% certain it could improve qof life for charlie- or where would it leave othr court cases if u can simply keep taking ti back to court till you get what u want

I'd say that there is zero chance of the judge ruling against the treatment if all of the medics were in agreement that it would give Charlie a chance of an improved existence and that the improvement would be meaningful.

If the judge intends to rule no treatment no matter what then he would not have put the parties to the expense and trouble of getting the medical evidence together.

I should think the judge will focus on the issue of brain damage, as that seemed to be the major point of contention in the last court hearing.

Do all the doctors agree on the level of brain damage?
What is the likelihood of the treatment leading to any improvement in the brain damage?
If there is any possibility of improvement, would it be sufficient to give Charlie any quality of life?

I would want to know if he would have any awareness of his surroundings, be able to communicate, be capable of intellectual development.

If the judge intends to rule no treatment no matter what then he would not have put the parties to the expense and trouble of getting the medical evidence together.

There are LOTS of reasons in this case to "prove a negative"
eg
To prevent any stalling or "buying time" and let the boy rest in peace
To prevent this case having a negative effect on future cases and health ethics in general
To protect the medical teams from backlash

There's lots of reasons for putting this back on the table one last time so it can properly and FINALLY be put to bed.

Exactly, Writerwannabe83. One thing that's really awful is that GOSH were going to attempt nucleoside therapy and an ethics approval request was drafted. Then a few days later, Charlie had a massive decline that made it clear he had the severe epileptic encephalopathy everyone agreed was a major contraindication. Understandably, they didn't submit it after that, but that's when the doctor-parent relationship went.

So they've had this treatment proposed, the go ahead to start the steps, then Charlie was too unwell to have it. Now they could get a yes, go over to the US, then be told that it's going to be a wait that Charlie can't physically manage.

Been saying.g that all the time tinseltwins

Yes, and at the most recent hearing Hirano was quizzed on Charlie being in pain and his level of brain damage, and on both those areas he said he would need advice from an expert here did he not?

I wonder if they got the scans done, or not.

Tinsel I take the point that there are lots of reasons to prove a negative.

I still don't think that the judge will ignore medical evidence which is favourable to the Gards as that would really stir up the feeling that there is judicial / state intervention against the rights of the child/ parent/ right to life.

This is all very hypothetical in any event as it is very unlikely that all of the experts will agree that there will be improvement of this nature.

Sonseneuto, just caught up on the thread, wanted to mention amitryptilline (or nortryptilline) can be very helpful for nerve pain. To start with the side effects can leave you drowsy but if you stick with it it can really help. I use it daily for chronic pain then have opiate types if getting worse, (bowel obstructions) and I agree I'm not keen on the affects of them too much.

Thank you for the new thread. I agree with the OP and also Darth's post.

I hope C&C are taking a break from social media - it is almost inevitable that they will have received some horrible trolling, since that is the nature of trolls.

Also, due to the ssue of Charlie's head size, it is almost certain that Charlie will have had further scans over the weekend. If so, it's likely they will have been reported ahead of the visiting doctors reviewing his case today. I would think it likely that the results will have been shared with C&C.

I asked my gdd what she thought (15) she said 'nan-pai, I value my brain, my brain is me. If I lost that what would be the point of living?'. So she has already set her own personal 'red line' on quality of life. We all set our red lines differently. That is yet another reason why this case is so hard.

I still don't think that the judge will ignore medical evidence which is favourable to the Gards as that would really stir up the feeling that there is judicial / state intervention against the rights of the child/ parent/ right to life

No I'm sorry but I do not think that this judge will in any way make his judgement based on how popular/unpopular the outcome is

I think he would change the outcome if the consensus in tomorrows meeting is dramatically different than before

I think he wants to make this as watertight as possible so that the judicial precident set will be healthy and won't damage our systems/laws/health system here

but I don't think he cares about what "feelings" the result will stir up

What happens to the court case if Charlie dies tonight?

I guess it just has to stop, but with no closure for anyone. C&C would just never know how it would have gone.

Thanks lovelybath77 xx