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

NellieBuff So sorry for your loss, and your honesty in saying how you felt at the time. Respects to you.

The NHS is funded mainly from general taxation and National Insurance contributions. In 2001, an increase in National Insurance rates intended to boost NHS funding increased the proportion paid for by National Insurance, although general taxation still accounts for around 80 per cent of NHS funding
so we all pay - everyone

Just having a chat with DH about non-science-area degrees, and he says that (MFL BA) afahk all degrees have an aspect of critical reading, as you need to provide credible references for essays.

@BeyondDrinksAndKnowsThings and @DarthMaiden

May I put forward another couple of completely academic questions? If statistically significant is the meaning of significant, is there an actual percentage? And who decides that? And is the "significance" here about improvement of quality of life? And if so, how is that quantified?

My other thought was about the term "experimental". Obviously experimenting on people without their consent to further medical knowledge is not okay.... But in this case the argument is the experiment is taking place purely in the interests of the child. Is there no way to differentiate between the two?

On a less theoretical note, I am feeling desperately sad for CY. I think once you start a campaign like this it is impossible to back down because there is so much pressure building up around you from other people and other vested interests. Plus, this is her life at the moment which is surely going to make the emptiness of bereavement all the more painful. I don't think she's going down the right path but I think she must feel like there are no other options.

A comment I would have about Dr Hirano's testimony was that he referred to the chance of 'success'. It did seem to me that he was using that word in the way a researcher would use it, i.e. a measurable change with no reference to any functional or qualitative improvement in the baby's life.

For example, if the treatment resulted in a consistent reduction in the ventilation pressures required to keep the baby alive, that would be a research success of such magnitude that Dr Hirano might be up for a Nobel prize. It would make absolutely zero difference to the baby's life except the possible extension of the survival of his lung tissue for a few weeks. I could not see that as a clinical success or worth extending the child's suffering.

If statistically significant is the meaning of significant, is there an actual percentage? And who decides that?

I can answer this one. A result has to have a 5% or less chance of having arisen through chance alone to be statistically significant. The term you'll see in academic papers is the p-value, which must be below 0.05 for a result to be significant. That means the chance of the result having arisen by chance is very small so the results you see can reasonably be presumed to be because of what you were testing. It's a very longstanding convention in the sciences - I'm unsure what the statistical reasons were for choosing 5%.

Critical interpretation of scientific articles is part of (nearly?) every science degree. People who don't have this level and area of education haven't learnt that skill. That's not a value judgement.

Yep, that's about right. It is practically the first thing we teach people coming to study science - we have journal clubs each week that basically rip apart scientific papers. It is great learning. Also you need to remember in science that it can take a really long time to go through and analyse all the results in a study, write a paper and get it published so by the time you get these new results and exciting breakthroughs the research has already moved on.

Post from CA Here is accurate information concerning Charlie's bill. It must pass the full House, Senate, and be signed by President Trump before it is enacted. And even so, the U.K. courts still have power over Charlie. I am NOT trying to be negative; I just don't want to raise false hope. I teach U.S. Government and I know that this process takes time. Still, so proud to be an American right now.

So the latest thunder clap is a event to get people outside Court on the 25th... This is the problem no space for the family even if they wanted it

Plus, this is her life at the moment which is surely going to make the emptiness of bereavement all the more painful. I don't think she's going down the right path but I think she must feel like there are no other options.

In Nellie's moving account she mentioned making some happy memories in the midst of it all

CY can't do that if her time at GOSH by CGs bed is filled with anger and "fight" and camera angles that show as much of his eyeballs as possible

Even on fathers day they didn't take a "brake" from the "fight", they invited in their publicity company/photographer, rather than just being with him

I can see why she feels now that she has to be always fighting

but I wonder if down the road she'll miss not having made any "purer" memories of just being with him, and not being always on duty as a fighter?

@CabbageLooking

I'm not sure I'm the best person to answer this.

There have been a number of academics on the thread(s) who have talked about this and hopefully one will answer properly.

Suffice to say, the study numbers might be small for a preliminary study (50 or so) but a fully study would look for thousands of participants - from what I gathered.

The other point made it depends on what the study is trying to prove. It might for example be in relation a specific impact of a drug that may not cover other "side" benefits or indeed issues.

What is particularly difficult is Charlie's condition is so rare you would never get a big enough sample size to make any results statistically meaningful.

A comment I would have about Dr Hirano's testimony was that he referred to the chance of 'success'. It did seem to me that he was using that word in the way a researcher would use it, i.e. a measurable change with no reference to any functional or qualitative improvement in the baby's life

I think exactly the same, if he's asked, "do you think the treatment will work" he will have to say "yes" because technically, if it makes any slight changes, it's "working"

which is a problem because that then gets interpreted as curing CG so he can ride that bike, but it might mean a tiny cellular response that doesn't change charlie's life

also, from HIS point of view/the language of research, if the only difference the treatment made was to enable charlie to feel pain after not responding to pain, that would technically be a "success"

Yes to all of the last few posts.

Thanks Sluttybartfast. That's really helpful.

So it sounds like the treatment, even if it works as best it possibly could, would not add any quality to his life. (With apologies to everyone who got to this conclusion some time ago).

What a horrible thing to deal with.

Isn't it telling that anyone posting something realistic on CA FB page has to apologise for appearing negative.

So it sounds like the treatment, even if it works as best it possibly could, would not add any quality to his life

I guess we have to wait and see what he says to the court

but

I would worry, that if he can't feel pain (rather than having his pain managed), in medical terms, a significant "improvement" would be to be able to feel pain, which would be a worse quality of life

or he could get weaned off the ventilator but without any ability to interact with the world.

He's in a bad way now, but he could be in a worse way, who knows?

A medical improvement isn't necessarily an improvement in existance?

To be fair cabbage, we don't know that. I was just frustrated that the judge / crossexaminer didn't AFAIK explore the use of that word.

The way I see it, DrHiranos evidence so far has been about the treatment in general
Not the treatment in relation to CG
I don't doubt his evidence in relation to the promising potenital of the treatment in general , but I also believe GOSH if they say the child is beyond the point of any treatment being kind.

You can believe both of them, simultaneously.

That's very bizarre Maryz!

@CabbageLooking

A poster called unweavedrainbow posted this on a previous thread:

I hope you don't mind me, I've been lurking on this Charlie Gard thread and others. I have a background in bioethics.
In terms of the letter, as far as I can gather, the type of mitochondrial depletion syndrome that Charlie has causes him to have a genetic mutation that means that he can't easily synthesise a chemical that the body uses to replace mitochondria as they die. This means that he doesn't have enough mitochondria to power his body. The treatment's aim was to give him this chemical so that he could make more mitochondria-and therefore get, at least a bit, better. The thing with the treatment is that there were some issues that hadn't been properly explored, such as whether or not the treatment could cross the blood-brain barrier. Thus the treatment would be experimental. These researchers are arguing that they have data that shows that the treatment molecules can in fact cross the BBB. They argue that this means that Charlie should be treated. It's not unethical, per se, if it means that he could recover some quality of life. Experimental treatment does regularly take place-especially if the patient/subject has very little left to lose. The key consideration though is that there does have to be a realistic possibility of increasing quality of life. With Charlie there really isn't and so arguably it would be unethical.
The letter simply doesn't take into account how sick Charlie really is-and I suspect that they're not actually aware of how sick he is. Even if the treatment works it can't repair the damage already done. Therefore it shouldn't really make much difference to GOSH's case.
I hope you don't mind me butting in.

Tinsel this is where the judge steps in. His objective focus is Charlie's best interests and he will want to know there is something in this for Charlie, a functional or qualitative improvement for him, not just a few hours a day off ventilation etc.

This is going to be the toughest thing in court. I hope very much that the US dr agrees with GOSH that this is not in Charlie's best interests and the eeg showed too significant damage, as if the judge has to rule that yes treatment could be given and might show some clinically significant progress, but this is not functional or qualitative for Charlie and he won't be changing the ruling, the family are going to be shattered all over again. Its a vile situation for everyone concerned.