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

@Blossomtoes

You can die while on life support machines, which is probably what the doctors have been telling her when they have kept saying she only has days to live.

And even if there was a treatment programme happening elsewhere and which might benefit her why should that programme accept her? There are probably many many patients closer to the programme centre who could more easily get there. People in the UK get into a tizzy about non British people jumping the queues for all sorts, why wouldn't the Canadians or Americans do the same?

It's an incredibly sad story and I do wish her well but in truth the best that can be hoped for is, perhaps, a peaceful death.

Is there a credible non tabloid source for this? The judge said there's nothing to confirm she'd be eligible for treatment at those Canadian/American hospitals anyway. Apparently multiple foreign hospitals offered to undo Archie Battersbee's brain stem death too.

Are they proposing to treat her for free and come get her on a flying carpet?

And yes the current situation is that the nhs can withdraw or withold treatment if they think its doing harm or not doing any good.

We are all going to die.

Quoting this to remind people to read the judgement before they comment. The judgement isn't even about the proposed treatment, it is regarding her capacity to make a medical decision.

Clearly a dreadfully sad case.

There patently isn’t a “gagging order” - the story is in the bloody papers! As usual there will be much more to this than meets the eye but the lowest common denominator will be outraged of course.

How do you propose she gets there? The journey will kill her.

@DisquietintheRanks

If she funds it all herself, what does it matter how much it costs?

TBH, it's unlikely she'll be able to raise it all, but at least she will be able to try to prolong her life as she wants too.

Its unhelpful and incorrect to frame the legal case as her against the doctors.

If she does not have capacity, which is thought to be the case due to her inability to accept the reality of her condition, then someone has to decide her best interests. Whether that is to spend the rest of her life on ITU becoming increasingly locked in, or given palliation.

Given the gravity and complexity of the situation, the individual doctors and nurses looking after her cannot straightforwardly make need the support and ratification of the court to come to the best decision on her behalf

Charlie Gard's mother has got involved with this family.

It's desperately sad whichever way you look at it but there's no way it should be allowed to turn into a media storm like the previous similar cases. The deluded 'army' idiots we've seen before did so much damage.

She was studying A Levels before she was in hospital for a year. And GCSEs will have been 3+ years ago. Presumably her condition has changed significantly during that time.

@andrainwillmaketheflowersgrow

So she gets to die with hope, doing something of her own free will instead of while being trapped in a hospital that she must hate by now with doctors deciding how, when and where she will die, with her last days spent thinking 'Maybe it would have worked if I had been allowed to go'.

I think, if that's the actual scenario, I agree with you. But it sounds like maybe she doesn't understand what would happen to her if she were to leave the hospital. Possibly it's been discussed as an option if she deteriorates further, or ventilation and dialysis are no longer keeping her alive?

I do agree that as she is not brain dead, then ultimately she ought to continue to receive treatment and life prolonging care if that is what she wants, and the idea of withdrawing e.g. ventilation against her wishes feels pretty horrific to me. Even if she doesn't have capacity, she is clearly able to communicate on some level.

It does feel a little bit like some of the DNRs given to patients during covid.

However, we don't have all the detail, and there is clearly more to this than is being reported in the news.

As sad as it is, she can't just do what she wants so she can "die with hope".

I mean, how do you propose she gets there? She can't breathe unaided, she's on kidney support and needs help to even speak. Why is it fair to put anyone in the position of transporting her?

its really not easy to get an assessment to confirm that someone lacks capacity to take such decisions. The usual reason for such a decision is that the person is badly cognitively damaged. What is in the papers is definitely not the whole story.

Yes, Canada's laws around this sort of thing are insane!

And what about the nurses and doctors who would be expected to go with her? What about how terrifying and traumatic a journey it may be for them? What if the patient dies on the way? I don’t think I’d want to be god knows how many thousand miles up in the sky dealing with a dying patient and trying to manage the emotions of the family at the same time….

Are the nurses and doctors just supposed to go despite not believing it’s in the woman’s best interests and just have to suffer the consequences of being present at would most likely be a very unpleasant death?

I can’t see many doctors and nurses queuing up for the opportunity to go….

I read this as the hospital blocking her decision to leave ITU and promptly die, horribly and without dignity. They want to keep her in ITU where her symptoms are palliated.

She views the decision (to leave) as one that would mean obtaining treatment - but that's delusional, because no treatment exists. Hence the lack of capacity.

That said, I don't have any more information than that which has reached the press. The courts exist to help make the right decisions in these circumstances. There's no motive to prevent her leaving ITU that I can identify other than for her own welfare/protection. Keeping her palliated in ITU is enormously expensive and this whole process of decision making through the courts etc is really stressful and time consuming for all involved parties - but is about doing the right thing legally and ethically.

She has the right to make her wishes known.

She has the right to challenge the medical team in court.

It's very important that these rights are upheld when patents/their familiar and clinicians cannot agree on a treatment pathway.

What it doesn't mean is that she the right to dictate treatment that the court has ruled is not in her best interests.

She is sadly a very, very unwell young woman who needs invasive 24 hr ITU care to remain alive.

A level of care that is not transportable over the distance she wants to travel, where there is NO cure/treatment that would have a positive impact on her outcome.

So to those posting she she be allowed to do this, how do you square her desire to live against a non essential journey (given the trial in Canada is no longer active and if it were she would need to be accepted in it - not a given) that would kill her?

Unfortunately, it sounds like she and her family are sadly in denial (much like the Guard family) about her prognosis.

She any they have my utmost sympathy but there is no treatment in Canada to save her life and the probability is the journey would kill her.

I agree with your 2nd paragraph (though the issue then would be fundraising on what would definitely be deceptive grounds – there's absolutely no way any of these highly emotive and often religious families will publicly get the medical facts right. But then politically they don't police facts vs lies for potentially very expensive decisions either).

On the 3rd paragraph – I think that's just what she and her family said. I wonder though if it was really some kind of medical miracle, or if they were just preparing her family for the worst case (and most likely) prognosis. She's on a crazy amount of daily medical intervention to have gotten her this far, and she would die instantly once out of ITU. The lifespan for mitochondrial disease ranges quite a lot, so she might have reached the further (but not miraculous) end of the spectrum, but there's ultimately still a ceiling.

Exactly this.

She could in an ideal world just pop off to Canada for a holiday or to engage in unevidenced medical trials.

Except she can't. She's too unwell. And even if she was more well, It would be at massive cost to the NHS and contrary to any current medical opinion to suggest she'd likely live through the journey to even attempt it. Let alone the current medical opinion that says even the proposed treatment cannot offer a cure.

It's not just a case of if someone has mental capacity or not. It's also a case of having mental capacity doesn't mean that having hope means it could work but extremely likely not, and therefore hundreds of thousands of NHS funds or donations are worth it because it's an emotional scenario.

And in my opinion, no.

No patient has the right to demand treatment (including transfer) from medical professionals that is harmful, futile or illegal. You can't request that your doctor harms you, whether you agree that what you're asking for is harmful or not. You can request that they leave you to come to harm. You can decline treatment. But someone this medically dependant (ventilated etc) requires medical assistance to do almost anything and being "left alone" means immediate death. So I suspect any kind of transfer would require a lot of medical assistance, and if that assistance is deemed to be harmful then medical professionals simply don't have to do it (and would potentially face professional and legal consequences if they did).