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

It's quite hard to die in ICU so the fact that she has stayed alive so far doesn't really mean much. If she can't leave ICU without dying, she wouldn't be able to travel anywhere for treatment even if it did exist which apparently it doesn't at the moment.

@Lizzieregina

I love the fact that one can read an entire judgment written by a person who has seen and heard all the evidence and say 'nah - she's worng'.

Without the hospital and the courts fighting the patient pursuing outside treatment, there would be no disparagingly labeled do-gooders bringing unwanted attention to the hospital. If the patient simply started a fundraiser for treatment and was left to do so, people wouldn’t really have anything to fight against.

She is ventilated because the muscle degeneration caused by her illness means her body can not breathe independently. Because of this degeneration she will never be able to be weaned off ventilation. Her digestive system is similarly compromised, as are her kidneys and other organs. This damage to her body, caused largely by the illness but exacerbated by a bout of Covid which led to such invasive long term support being needed , is irreversible .

@saffronsoup

And yet, dialysis hasn't been stopped. So there clearly hasnt been a unilateral medical decision without court input, as is somewhat being implied here re dialysis. It can't be that the medical team are happy to discontinue life sustaining dialysis with no court input and against her wishes...because they haven't done so. As others have suggested, possibly this aspect relating to the dialysis is in case of some potential future event (dialysis complication, medical deterioration, loss of access). My point is the individual complexities of harms and benefits of dialysis in her case are not publically known. Posters on this thread are literally accusing her medical team of planning euthanasia (!) which apart from anything else simply isn't legal in the UK, under any circumstances. That's the influence of an unscrupulous press and I fear, people commenting on something without an awareness of their own level of ignorance.

My issue here is that doctors have been telling her she was going to die soon fir a very long time and she hasn’t.

Im personally more and more sceptical of the medical establishment when it comes to cases that are ‘unexplained or surprising’ like this.
Too many times, patients, women in particular, are told things as if they were THE truth and then proven wrong.

In this case, why is it an issue if she is kept in her current treatment? The fact she will die if she stays on it is not here nor there as she will die anyway of she isn’t getting treatment too. 🤷‍♀️🤷‍♀️

And to be honest I can see why she doesn’t necessarily believe what they are telling her. They keep saying that she is going to die imminently and she’s still here.

Except they don't. You are making the mistake of believing the newspaper report rather than reading the judgment, where the actual beliefs of the treating doctors are set out. The only times they have thought she could die imminently have been two occasions when she became seriously ill due to infections, but they managed to pull her through.

I feel sorry for the doctors - the very fact that they have pulled off a miracle for her twice is now being used against them.

I'm not sure it's very good to make societal judgements about who has quality of life and who doesn't

Nobody's suggesting making "societal judgements"; however medical judgements like this have to be made every day - hence QALYS

The issues around disabled peoples' rights to autonomy and the best life possible are very valid, but we're not talking here about someone who's just a bit of help away from such a life. Tragically this young lady is dying, and would almost certainly already be dead were it not for extensive input keeping her artificially alive

Unfortunately what we're seeing once again is an expectation for people to be kept alive at all costs and neither life nor medicine work like that

@Pawpawpatrol if you look at the harms of dialysis for example, what could they be that would be worse than stopping her current treatment fir her condition - aka death??

My own experience is that they are quite happy to carry on treatment fir cancer even when it’s clear that the cancer is terminal and the patient has only a few weeks left. I mean they were still talking to a family member about improving their bladder issues when they were 2 weeks away from dying from metastatic cancer with it entails.
If this young woman only has ‘days to live’ why insisting she should stop her treatment fur the sake if a few days, knowing how upset she would be about it?

My guess would be that it comes down to cost. The NHS is a shit show.

given in many countries the cost would come down the individual or their insurance I think this is an unfair comment. NHS funds can only spread so far ar the end of the day

No decision has been made about that currently. All that the court has decided on is the issue of the patient's capacity.

Would she even be given a visa to go to Canada when there is no treatment waiting for her?

I agree honesty is important but I find it hard to beleive you have worked in that field and not seen a young adult who didn't want to just give in and die as soon as the terminal prognosis was given. Your earlier point was that the right death for her was one where they just accepted the prognosis a year ago and turned up the morphine untl she was gone so that her last memories were all positive and not related to her illness. You seemed incredulous that any teen would want to fight to live or want intervention or experimental treatment to live as long as possible. You can't seem to understand her choices at all. I realize anyone can say they are anything on here - and when someone says they work with teens but that they shouldn't fight or want to live as that will ruin positive memories, it doesn't really fit with reality.

No, the court ruling refers to a time in February and also says that when the evidence was given they believed she had days to weeks to live, at most a month - which would have had her dead by the end of August.

Given her death is so imminent, it seems a massive waste of resources to fight so hard against her desire to not have morphine or dialysis removed.

That case is dragged up every time one of these cases happens, and invariably people give the facts wrongly. The child in question was saved by the operation and further treatment he had been given by the UK hospital. It was simply a case of the parents disagreeing about the follow-up treatment. Given where the child's tumour was, the treatment offered in the UK was entirely suitable.

@x2boys

Most patients who are ventilated have a breathing tube passed along their natural airway that is through their nose or mouth and down their throat. They have to be sedated because without sedation, where the tube passes the back of the mouth it would trigger gagging and coughing reflexes, which would be painful, frightening and would most likely result in the tube becoming dislodged.

Also, if somebody has (even partially) working breathing muscles and reflexes, then paralysing and sedating them also allows the machine to completely control breathing, instead of fighting the patients natural breathing responses. Or it may allow the patients own breathing systems to rest. Complete outside control over breathing might be helpful or absolutely necessary for survival depending on why the patient needs to be ventilated. (In some situations paralysis and sedation is "lighter" to allow the patients own breathing to take over more - particularly if they are getting ready to come off the ventilator).

However patients who are long term ventilated have a surgery to make a hole in the front of their neck, through which the breathing tube passes. The hole is called tracheostomy. This bypasses the coughing and gagging reflexes so sedation isn't necessary, allowing patients to be ventilated awake. You wouldn't put in a tracheostomy for everyone though as it's potentially dangerous surgery that has complications, has to be reversed and leaves a scar etc and for other reasons (eg above) it may be necessary or beneficial to sedate and/or paralyse them in any case.

In this case, the patients muscles are so damaged from her disease that they contribute nothing to her breathing so she effectively is already paralysed and that's why she needs ventilation in the first place.

@ZadocPDederick but that treatment in the U.K. was likely to leave the child with serious brain issues that the beam treatment didn’t have (or not as much. There is always a risk etc…).
At the time, beam treatment wasn’t available in the U.K. (it is now). So parents had no choice but to go abroad to get said recognised and available treatment.

Doctors didn’t listen though and ASSUMED the parents were doing something doggy instead….

Please please can people read the actual Court of Protection ruling which is just about capacity. No decisions have been made about future treatment as yet - this will be made by a tier 3 judge. Nothing has been said about treatment - this was all about capacity!!!!

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

Although the judge didn't rule on treatment, there is plenty said in the ruling you have linked on treatment - in the evidence given by the various experts and the perspectives of the young women and the doctors. People did read the document and are commentin gon the content - not just the final ruling.

@saffronsoup there had to be that discussion to rule on capacity but no future treatment decisions have been made and some of the hyperbole on here is alarming to read.

@LifeIsShitJustNow

Okay so just to be clear, you aren't a medical professional but you feel totally certain and comfortable in your knowledge that dialysis comes with no harms that might outweigh the benefits in this complex medical case, the details of which you are not privy to?

And on this basis, you maintain that the medical team are too hastily withdrawing a life prolonging treatment against the patients wishes, though in fact they haven't done so to date and decision making has now been escalated to the courts, and despite your own personal experience which suggests to you that extensive treatments are indeed offered when appropriate (and perhaps even when not appropriate?) to terminally ill patients on the NHS?

I'm not trying to be patronising I'm really not I just think people need to put some critical thought into this, because it's easy to get caught up in the emotions of it and create a narrative that doesn't fit the facts.

(If I have literally got the wrong impression here please forgive me. I see the argument "if dialysis is prolonging her life and isn't harmful, her being terminally ill isn't a reason to withdraw it" I just don't know that those circumstances have been established and it hardly seems fair to criticise the medical team when they haven't withdrawn dialysis.)

Right (and I had posted the same earlier that the ruling wasn't about treatment) but the discussion here is of that discussion from the document and about the concept of the withdrawing of interventions from someone who wants to live as long as possible, in the context of a fairly imminent death. The document clearly presents this position as being the desired one by some.

If the patient simply started a fundraiser for treatment and was left to do so, people wouldn’t really have anything to fight against

Please say you're joking, Ponderingwindow? Surely you couldn't possibly have missed at least two previous cases, where SM exploded with people insisiting that the hospitals and their "murdering doctors" should be fought to the bitter end?

I think many people don't know the realities of either ICU OR these tragic progressive mitochondrial conditions.

She can't breath
She can't eat
Her kidneys have failed.
She is deteriorating and 12 months of intensive care has not improved her condition. Her doctors have rightly been talking to the family about planning her end of life care. When there is a lack of agreement about how to proceed it is only right that the courts are consulted.

This is a very tragic story, which is what I said on the previous thread about this unlucky young woman. I admire her fierce desire to live. I wish her dream were possible.

The NHS would be blamed if she died in the carpark.

it's easy to get caught up in the emotions of it and create a narrative that doesn't fit the facts

Wise words, Pawpawpatrol, and considering what happened on a number of other occasions I suspect this is largely why the young lady's identity is being kept confidential

Of course this may lead some to claim the medics are behaving "dodgily" and that they fully intend to "murder her on the quiet", but they'd say that - only a thousandfold - if able to launch a campaign with cutesy pictures, rows of emojis and suggestions of demos, and at least this way the hospital and its staff and other patients are saved the pain