NHS gagging order on 19 year old with mitochondrial disease.

[AbbeyGailsParty]

The girl cannot be identified. Canjot identify the hospital she is in. Cannot make decisions about her own medical treatment. Neither she or her family can fund raise for alternative treatment in Canada or USA.
Unless I’m really missing something, she sounds perfectly reasonable and rational. Wtf is going on? Atm this is the only link I’ve found.
https://www.mirror.co.uk/news/uk-news/i-fight-doctors-who-say-30900078

Everyone should read this ruling before they comment on this post.

@CCTVcity but there is no "on the way to Canada" option available now and from the sound of there never will be just because she is too sick to be moved. Unless by "on the way to Canada" you mean " in the hospital foyer".

@DisquietintheRanks
Well yes if that’s what she wants. Can they not clear the foyer temporarily 😢

FGS she won't make it to the car park. A six hour flight (to what - there is no Canadian therapy waiting for her) is not an option.

Fucking hell.....

I’m not joking. From what I am reading your saying the physical is fucked. So really the only welfare options left are mentally and sadly your saying her parents have essentially brainwashed her into thinking the nhs are trying to murder her. So if the option is dying in situ and her thinking she’s being murdered, or dying in the foyer and her thinking that’s a sadly failed attempt at freedom then why not?! It’s not all about being ‘right’. Her delusion isn’t harming anyone else, and it’s only harming her mentally so why not indulge it.

The point is this isn't what she wants. It isn't what she's choosing. What she thinks she is choosing to actually go to Canada to be cured. She doesn't accept that "death in the foyer" is the inevitable outcome of her "choice".

They are not saying she lacks capacity for all purposes. It really is worth reading the judgment, which explains the medical evidence on this and why the judge reached the decision she did.

That may be the point - this patient was not able to tell the psychiatrist the prognosis of her illness, because she is in denial about aspects of it, sadly.

Yes, I appreciate the discussion! I’m always fascinated by the differences in how things are done in the UK versus the US.

A teenager (over 18) with a serious illness in the US would almost certainly have a health care power of attorney designee, most likely a parent. If the teen was deemed unfit to make a healthcare decision, it would be made by the parent. Many times when we see this here, the decision made isn’t necessarily the best one but you still have the right to make it (as I suspect would happen in this case). You can only hope that the person holding the POA keeps the best interests of the patient at heart, but doesn’t always happen.

As a person getting up in years I have a HCPOA (my DH) and I hope if there’s ever a question of what’s best for me and I can’t make the decision, he makes the right choice.

Fair enough I get what your saying. But I am saying she thinks she’s being murdered by the nhs. I am assuming wrongly. So she isn’t right about either outcome, and she’s going to die in both scenarios. The only difference being one where she thinks she’s being murdered and one where she doesn’t think she is - although ironically kind of is. God it’s tragic!

Absolutely no chance.
Read the judgement.
ST is fully dependent on a ventilator, and even moving a ventilated patient to another part of the hospital would be a major undertaking.
This patient is currently close to death.
She would not survive getting to the airport, never mind a long plane journey to a country where a non-existent treatment is thought to be available.

My thoughts exactly. SHe is apparently going to die within days ( though they have said that for a while) . Why waste NHS money on lawyers that should be spent on health care - just to make sure she definitely dies sooner? If they are sure in their diagnosis that she is about to die then there is no issue.

Capacity assessments are decision specific, people do not have/lack global capacity.

You cannot conflate academic ability with capacity to make a complex medical decision.

That's interesting to read about. Thing is though, as you said, he got treated abroad because the court in that case ruled that he should. Not that they're infallible but it's clearly a more objective appraisal based on medical expert evidence as opposed to them being mere NHS stooges.

I'm also of the "let's hope for a miracle, no harm done" school but there's a reason these cases involve minors (and the court protecting their best interests). Putting them through all of that futile pain and suffering and invasiveness when their organs (and brain!) are irreversibly and rapidly breaking down – and they're kept alive literally only by hundreds of machine processes, to an extent really different from say the last stages of cancer – isn't quite a mark of care.

She is 19 here though and seemingly articulate (though highly deluded re what she's been told like thinking it's long Covid) – mind the judgment may well be overturned as it's only the Court of Protection and has a long way to go before reaching the Supreme Court. In fact a prolonged legal appeal is likely her understandable way of dragging out staying alive till the trial becomes viable. Time will tell if the medical predictions will come true or not

And just to add the judgment is only re her capacity, not re the other decisions in this case. So long way to go.

"Why waste NHS money on lawyers that should be spent on health care - just to make sure she definitely dies sooner? If they are sure in their diagnosis that she is about to die then there is no issue."

@maratara because the medics are obliged to behave in the best interests of the patient and need a court order that specifies what they are, given they can't reach agreement with the family.

Giving invasive treatment to someone who isn't benefiting from it must be quite traumatic. And presumably they are faced every day with people whose treatment is delayed due to lack of resources.

And perhaps they fear ending up in the Archie Battersby situation, with no further treatment possible and a family that refuses to accept their child has gone.

DM refused to accept DF was terminally ill. We didn't manage to do any of the preparations, have any of the conversations, and it managed to be a terrible shock to her when he died. She was quite sure he would pull through. It's a hard thing to deal with.

I'm not sure if this has been posted on this thread, it is the judgement

https://www.bailii.org/ew/cases/EWCOP/2023/40.html

Its heartbreaking but from the Hospitals point of view she's going to die imminently they want her death to be as calm and peaceful as possible ,not a media circus

But that still should be her choice!

Just like we ‘let’ people chose if they want to carry on chemo or not, with all its side effects, when they are on their last days. Some people decide to go for no treatment early on and have peaceful days/weeks/months. Others decide to try any options there is until the end. No one should judge that.

And just like some people would want a MAID option available in the U.K. if they develop dementia.

What should not happen is fir someone outside to decide that it’s better for that person to have a peaceful death by doing X or Y rather than what the patient wants.

Also worth remembering that the patient is entitled to change their mind, which happens often too.

@x2boys im not sure that going to tribunal was the best decision if they wanted to avoid a media circus and maker her death as peaceful as possible tbh.
Because just now, that patient will be feeling anything but calm and peaceful.

Yes, but nobody has the right to demand that their doctors or nurses harm them, and doctors and nurses have a professional and ethical duty to refuse such requests. Moving her will cause her harm, and no health professional can or should be asked to facilitate it.

I haven’t read the full thread because I read the court ruling linked at the bottom of page 1.

It lays out at great length and in great detail the exact medical and psychological condition of ST and her family.

From the few pages of this thread I have read, it’s a great shame more of you haven’t clicked the link - it’s been reposted on every page I’ve read.

So here it is yet again:

https://www.bailii.org/ew/cases/EWCOP/2023/40.html

But whose you g to.facilitate that?
I.can't imagine any Dr or nurse wanting to facilitate what could be a distressing and chaotic death
Its an incredibly sad case and if it were my child I would want to.try all.option but objectivly the NHS want the best outcome for their patient even if ultimately that means death.

I just had a quick read and there’s way more to this than in the newspaper articles.

She has been in the ITU since December 22, is in the final stages of her illness, but could still live for weeks or months.

The hospital and doctors have assisted with sending details of her condition to the American clinics and don’t oppose her being taken there for treatment, but she hasn’t actually been accepted for treatment. They (UK doctors) don’t think that she will survive the journey though.

She has had to be resuscitated twice in the last 6 months and has had pneumonia too. It seems like the hospital would like to stop actively prolonging her life so no more resuscitation or antibiotics.

The opinion of the UK doctors is that even if she had the US treatment, her illness is so far advanced that she still won’t be well enough to be removed from a ventilator.