Charlie Gard 13

[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:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

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

What is causing those issues Zzzzz? What is causing Charlie's inability to breath, to see, to cry? What is causing the horrific oedema that is stretching his little limbs? Why does he need to hard plastic tube inserted into his trachea? They are being CAUSED by his progressive, terminal illness. They are symptoms and effects of his terminal illness. Wanting Charlie to have a peaceful dignified death because he has a horrific 'quality' of life because of what his terminal illness has done to his body and describing those symptoms is NOT disabalist.

I actually think it is disablist to consider disabilities and illnesses and death "unspeakable"

Of course we could look at the other side re disabilism.

Those (eg CA) who think it is a good idea to perform an untested experiment - on a profoundly disabled, terminally ill child - for the chance to have him "normal" and riding a bike?

I know what I'd call that...

equality doesn't = pretending everybody is the same

it's not only not disablist to acknowledge and consider someone's disabilities in relation to their healthcare, it would be disablist not to and to proceed with a care plan fit only for able bodied people.

It would be wholely inappropriate to only consider charlie as terminal and not also disabled, when he is both.

He is not in the same position as a terminal ill child who can communicate and can experience for whom any extra few weeks prolonging the inevitable coiuld be made enjoyable

so can I confirm, that you think the fact that his disabilities are part of the consideration = disablism is a factor in the decision?

so, does that mean that you think it's disablist to consider people's disabilities?

Is the non-disablist route in your view to treat all disabled people as if their disabilities don't exist?

Would it be preferable to put a disabled child on a care pathway written with only able bodied children in mind? since it's "disablist" to consider their disabilites?

Because that, to me, would be disablist

The judge is cranking up the pressure now.

It is very telling that he asked Armstrong to produce a schedule of new evidence. The point has always been that Armstrong has no new evidence - he is just raking over old ground and exploiting the medical uncertainties that dog all cases of this nature.

Asking him to provide it in a schedule is asking him to commit to paper what his arguments actually are.

I think this is only going one way next week. I say sadly, because it is sad - but it in the best interests for that poor baby.

After which time, I truly hope there is someone on board to help C&C with their anger and bitterness so that one day in the future they may find a measure of acceptance and peace.

I absolutely do not know enough to make any judgement but I think you are conflating two ideas, those being should the child be allowed to die , and has disableism been part of this decision . My own opinion is that the answer to both those questions is probably, yes. I'm not sure if that's relevant or not.

So do you mean that the fact he's blind, deaf, paralysed, ventilated, unable to communicate, having seizures and unable to feel anything shouldn't be discussed in relation to whether he should be allowed to pass away and the decision should solely focus on his incurable syndrome and the fact that his organs are failing?

We know that Dr Hirano has had full access to Charlie's notes. I don't understand what more C&C think they will get out of the notes by seeing them themselves?

I think this discussion has been clouded with not compairing like for like

Disabled doesn't = disabled
Each individual is different

Charlie is not like a ventilated child who can sit up (with help) in a wheelchair and go out and about and see

Charlie is not like a blind/deaf child who can stroke a cat and feel a prickly cactus

Charlie is not like a paralised but mentally active child who can use computers to communicate

Charlie is Charlie, and sadly, he cannot have the quality of life that many disabled children are able to have, because for a start, his body isn't sustaining life at all!

I won't join in a bum fight but would definitely join a BUM fight. Who is game. If it goes on largeness I in with a shout of winning. I would also stand a shout of winning for sagginess.

I wont join a bun fight - oh Lordy will I ever learn to spell properly

Okay, if we ignore that "he's blind, deaf, paralysed, ventilated, unable to communicate, having seizures and unable to feel anything" then I still maintain it is unethical to give experimental medication to a dying child whose organs are failing, who cannot give permission themselves and without a realistic, objective belief that it will improve their life. When it could also easily make it worse (there are side effects)

There are many children in the UK who are profoundly and multiply disabled, which can often mean varying degrees of deaf, blind, paralysed or severely movement limited, with severe cognitive difficulties, with severe epilepsy syndromes, oxygen dependent or trachy users, tube fed - the ones I've met certainly have quality of life and are very much loved by their families and the school and health teams who support them. Those disabilities in themselves absolutely shouldn't have bearing on whether there is a quality of life sufficient to justify treatment. I've had that argument with professionals on behalf of some of those families - GOSH actually often did procedures and surgeries for those children gladly where other hospitals didn't feel it was worth the results.

It isn't the same situation as poor Charlie. I do agree I've been uncomfortable at times at some of the court statements about quality of life related to those disabilities. I wonder whether the language and terminology has been more about whether the potential stress, distress and risks of this unknown treatment are justified when the best that could be hoped for is so minimal in terms of functional achievement for Charlie?

I won't join in a bum fight but would definitely join a BUM fight. Who is game.

you are aware right that it is a drinking game but with fibrogel instead of vodka?

zzzzz you are raising fair points. But my stance (gained from personal and professional medical experience) that in Charlie's case the sooner we can let him pass in peace the better.

Medicine and cases like this are not "one size fits all". The medical staff at GOSH would not be fighting so hard if they did not think it was best to end Charlie's suffering.

I am just failing to understand how it is disablist to treat someone as an individual with disabilities

I want to know how you think this case would play out without what you consider to be disablims?

Can you explain how you picture a non disablist judgement about CG?

"I think the perception of what it is like to live with disability profoundly colours the discussion."

Some judgement of 'what it is like' is bound to enter the discussion or deciusion, because someone (i.e. the judge) has to make an assessment of Charlies quality of life in order to determine what is best for him since he can't speak himself. So, it would be logical in a different case to argue that disability X is being judged wrongly by someone who is able-bodied, for example.

But in this case, this is a red-herring, because as GOSH said previously, the case here is probably 'beyond experience' and with a terminal illness to boot. Goodness, if there were a real prospect of any experience (plus terminal illness), then you would be having the 'how worth it is to have that experience and how much might he have to go through to have that' discussion. But at the moment, we're not. because the 'beyond experience' with no real prospect of anything better is where the facts seem to be at.

An able bodied terminal child's ability to enjoy life would be considered (e.g. if in unbearable unconrollable pain, it might rule against prolonging life)

so where does the "ism" apply by considering charlies ability to enjoy life?

Where is the discrimination that makes it "disablism"

It rather looks as if Dr Hirano didn't say what C&C wanted in the meeting, hence their reluctance to work on the basis of the transcript alone. But it would be wrong to call him back to try to rehash the long discussions he had with his colleagues - unless you're going to call all of them to the witness box as well. Which obviously is not going to happen.