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

There's nothing to indicate that she'd be prevented from doing so, if that was the case. But it's not.

It's a bit like saying "if space aliens from the planet Zog landed and promised to cure her with their Tricoder, should she not be allowed to do so?"

There is no alternative treatment, and as she's being kept alive artificially and there is no life support facility in the UK other than NHS, there's no physical way to get her anywhere else.

I'm not sure what her supporters actually want, because it's not clear what she/her parents want. Okay she wants to be able to be publicly identified to help in fund raising, but to raise money for what? She believes she's ill with long covid but she still wants experimental treatment for a disease she doesn't believe she has. Or she wants treatment for a different mitochondrial disease that she doesn't have that. She wants to go to Canada, where there is no trial. Or does she want a pill that she believes will cure her, because if that existed they'd just Fed Ex the pills to the UK.

She appears to be in a critically ill state that is stable in its nature. The dialysis is not failing yet, although at a high level, the ventilator etc is doing its job. She also hasn't arrested to anyone's knowledge in the days since the court judgement was read. She needs intensive intervention but is in relative terms as stable as anyone else on the ICU, however, unlike many of them, at this time, she is able to speak using a whispered voice to communicate her wants and needs and can put her thumb up to respond to others.
She may have been judged to not have capacity regarding her understanding of the likely hood of her recovery but fundamentally, she is able to articulate that she does not want to be filled with Morphine against her will and at a time she has not chosen. Currently she is not ready to die and we should respect that. I can fully understand how vulnerable she must be feeling, wondering if anything that is injected into one of her lines is going to be some Morphine that she wasn't told about.
In this country Euthanasia is not yet legal and while many who are at the end of their life might be happy to be put to sleep in a pain free way, there are others who would most definitely not. She is one of those people . It is the reverse of dying with Dignity to be put into a drug induced coma if it is not want you want but because everyone else thinks it is best for you. She will no doubt be aware of what she can cope with pain wise and will be spending quality time with her family. This could all change, she could feel differently if her situation changes and that is absolutely fine as well. Surely the medical team could have managed things better than this and worked with her in a more positive way to give her peace in the last phase of her life.

No one would be just giving morphine against her will and without telling her. As a former HCP I find that suggestion really offensive.

What would happen was her dialysis would stop. Her electrolytes would start to become deranged and she would lapse into a coma as uraemia developed.
It depends on whether she has any residual renal function as to how long she will survive, it could be weeks.
She may become agitated and disorientated before she lapses into a coma and this may be the point they may consider midazolam and/or morphine, but that would be for symptom control and not to euthanise her.
Honestly wtf, we arent going round injecting people with drugs to bump them off, anything they are given is with consent if they are able to give it and purely for comfort and symptom control.

Is deliberately stopping a treatment which means she will lapse into a coma and die any better really?

Withdrawing treatment that is currently successfully keeping a conscious person alive, when they want that to continue. How is that right either?

If the doctors are right, she's only got a short time left anyway, so why further stress her last few days/weeks/month by insisting on withdrawing treatment. Its unnecessary.

If the doctors aren't right amd she has longer than they anticipate, then thank goodness if they don't withdraw treatment as they'd have been killing her prematurely.

I dont see what the benefits of the Trust's plan is apart from ensuring her bed is freed up in a timely fashion.

They know that legal proceedings will take months by the time inevitable appeals are heard. They don't think she has months, so why being proceedings to shorten her life when shes almost certainly (by their evidence) going to be dead before it concludes.

Not all medical treatments are suitable or appropriate for administration right up till the moment of death.

And I am also disturbed at the notion that medical or nursing staff would administer morphine secretly to a patient in order to achieve euthanasia.
This does not happen.

She is dying whatever they do, it comes down to how that plays out. She could develop sepsis from line infections, pneumonia or pneumothorax from ventilation, she could throw a clot off from haemodialysis or bleed out. she could arrest, meanwhile she will continue to lose more function like sight and hearing and what little muscle strength she has left due to her mitochondrial disease, a slow death trapped in her own body, unable to communicate her needs.
There are loads of ways she could end up having a traumatic death

The Drs know this, that's why they want to discuss moving onto a palliative care model, where her symptoms can be controlled and she is provided with comfort measures
This is a really sad situation, but nothing will change the inevitable, all you can do is try to make it as pain free and peaceful as possible.

This ^

I was once called in to the cath lab, when the patient arrived he was writhing around in pain and unable to sign the consent form or speak to us to give verbal permission.

A trip to a mental health ward was no good, the cardiologist asked everyone if they agreed the procedure was in the best interests of the patient, we did and he had a stent fitted.

Similar happens if you are unconscious. You are not in a position to consent.

THis is also why when you consent to a keyhole procedure the surgeon will also talk through converting to an 'open procedure' and ask for consent for that.

There's a baby with mitochondrial disease in the papers today.

For a case to come before the court of protection, she has to have a 'mental impairment' which causes them to lack capacity to make 'the decision' that has come before the court (in her case to take her off treatment and put her on palliative care). Two psychiatrist considered she 1. did not have a mental impairment and 2. had capacity to make the decision. But the lead Dr at the NHS trust decided otherwise and hence it proceeded to the CoP. The judge (J Roberts) didn't argue with the psychiatrists but decided she couldn't 'weigh' the relevant information because she refused to accept the information given by the Dr's.

To me it's like saying to a drowning man. 'You should know that clutching at straws won't save you and because you won't accept this, I deem you to lack relevant capacity.'

https://citizengo.org/en-gb/211802-19-year-old-girl-says-let-me-live-stop-hospital-withdrawing-treatment

There is a petition

Maybe before we all give our armchair opinions we should spare a thought for the judge, legal team or doctors and don’t have to make these very difficult decisions. I have no doubt that they all take these duties very seriously and diligently

@Mysleepisbroken

"If the doctors aren't right amd she has longer than they anticipate, then thank goodness if they don't withdraw treatment as they'd have been killing her prematurely."

Killing her? This kind of emotive language is cruel. Cruel not only to those treating her and involved in her care, but cruel to ST herself and her family. Withdrawing treatment is not equal to "killing her" and giving false hope that she can survive and be a candidate for a treatment that is not available is immeasurably cruel.

A fantastical story which suggests to those who 'read' it that there is hope, that there is treatment available if only the mean NHS wasn't stopping her.
I wonder why 'Christian Concern' hasn't linked to the public court documents in their fairytale?

Sorry, that was supposed to be in response to the petition posted by @12moose

Well having been in the system with a close relative, that's not how it's ever worked in their situation. They're using some other threshold & yes I agree people can have capacity for x but not y, but that's picking & choosing to suit, what decisions someone can or cannot make & actually I think could leave someone feeling even more powerless

From the petition: "A judge has now ruled that ST lacks the capacity to have a say in this life-or-death matter via her own lawyers"

Have they? I thought the case was ongoing?

"Her family wants to appeal to the public to raise funds to enable her to participate in a clinical trial which is expected to start in Canada later this year"

Given that we're already half way through September and it's said the "clinical trial" has no funding, this hardly seems likely

Doubtless the "Armies" will appreciate having "something to do", but I do hope this isn't yet another case of pressure grroups making fools of themselves by spreading misinformation

You can have different views, you really can't have different facts.

Well they get paid enough money to make those decisions. And they chose that job. I'm not going to be spending my time sparing any of my thoughts on sympathising with them. Sorry but they can walk away, she & the family cannot.

If they all walk away she dies. I don't think people appreciate how much the NHS is responsible for the fact that she is still alive.

It isn't picking and choosing, it's the reality of mental illness and importantly it recognises that people with mental difficulties should have as much independence as possible.

My father had a stroke which left him with some fairly mild symptoms but totally took away his understanding of numbers. That meant he couldn't safely be left to cook, shop, deal with his own medication, look after his finances etc. So for those purposes it was accepted that he had no capacity, but he was still able to live independently and reasonably happily for a long time with my brother and me looking after the stuff he couldn't under a Power of Attorney.

If we hadn't "picked and chosen" he would have had to be declared totally unable to look after himself which simply wouldn't have been true and would have left him utterly miserable.

Emotive or more, to the woman involved, the deliberate decision to cease treatment that is succeeding at keeping her alive, is a decision to kill her.

How could it not be?

The Trust considers stopping dialysis and moving ST to palliative care to be in her best interests.

Let's imagine for a moment that ST wasn't on dialysis, but it's otherwise in a similar condition. How would you feel about them deciding to withdraw ventilation against her wish? Would saying to ST 'in 3 days we'll turn your oxygen off' . How would that not, to ST feel like they were going to kill her in 3 days? I don't think there's a chance that the hospital would seek to withdraw ventilation from a conscious patient against their wishes. It would seem barbaric. In this case the hospital has another way to 'hurry her along' which seems more gentle, but is in effect the same, over a longer period.

Yes there is a distinction legally and in reality between ceasing life sustaining statement and killing someone but it's often pretty subtle, and it's something we need to be careful with as a society.

COLLUSION | English meaning - Cambridge Dictionary

agreement between people to act together secretly or illegally in order to
deceive or cheat someone:

So why exactly would the doctors so this?

Sadly she will become less and less able to communicate her wishes as her disease progresses. If the doctors are saying to her - you are going to become entirely locked in, how and at what point do you want your life to end?' And she says 'that's not right, i not going to think about that, or tell you what i would want to happen when i can no longer communicate, because I am going to get treatment and improve' then what is the answer to that?

I don't know why people keep talking about stopping treatment. As far as I can see there is no suggestion of not allowing her to continue to receive the treatment that she is having. This judgment is purely about whether she has the capacity to understand what is going on and whether she understands the likely consequences of trying for a transfer to Canada (to a non-existent treatment on a currently unfunded and therefore non-existent trial for a variant of the disease that she does not have). There has been no suggestion that dialysis or ventilation will be withdrawn at this stage.

Moving to palliative care means having conversations now (while she is still capable) that will inform the sadly inevitable end of her life. It does not mean giving her morphine so she stops making a fuss and dies more quickly.