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

No, it isn't their job. No medical professional can be forced to accompany this patient to Canada, and they are all subject to a professional obligation not to take unnecessary action that they believe will harm the patient.

If she were to go, it would be through a privately funded plane with privately funded care. That is one of the many hurdles that neither she nor her parents seem to have thought through: realistically how are they going to find privately funded HCPs with the relevant skills who are prepared to do this? Remember, not only is she on ventilation, but the judgment states that it is agreed that, during any journey, she would have to be taken off the haemodialysis she is on and that it would take very little to tip her over the edge into crisis and a really unpleasant, panicky death. I'd be amazed if anyone is volunteering for that.

One of the really concerning aspects of this case is the involvement of the Christian Legal Centre. We have seen in other cases that their influence has been quite inimical and that they have much more interest in pursuing their own political agenda than the welfare of the very vulnerable patients at the centre of the various cases in question. They seem to batten on people at the most horrific time of their lives and try to use their tragedies to their own advantage. It really is the very reverse of Christian conduct.

Absolutely. They are vultures and I'd like to see them banned from UK courts.

@SpidersAreShitheads, I agree entirely and I think that if a month passes and she is here with no deterioration they will be able to challenge the capacity judgement. She doesn't have zero understanding of the severity of her condition. She refuses to acknowledge her impending death using the timeframe her medical team have imposed upon her and is hoping for a miracle. It feels more as if she is not scared of death but scared of being put into a medically induced coma on the medical teams say so. Which when you are conscious but dependent on other people for your care is entirely reasonable. She is clear that she doesn't want this to happen. I would imagine she is fully aware of how much pain and intervention she can cope with and would articulate if it is too much for her. This young woman is verbally articulating her desire to live in the moment. Medical staff could say that it is not what they would choose if they were her or that it isn't a good way to die, but it can't be their decision to make when the individual involved is talking to them and giving them her preference.

But her parents are telling her that if she has the treatment she is likely to survive,,and that furthermore she will be well enough to come off the ventilation, which because of her underlying illness is not going to happen as her whole system is too degenerated by the diseases progression.

This is the issue, Even if she was accepted onto the US trial,( unlikely as it is not about the same illness that she has and trials tend not to accept patients who are likely to die and skew their results) even if they raised the funds, even if she survived the journey, she is not going to live longer or with a better quality of life.

It is this mismatch of understanding between what the family, and their “advisors” - who may or may not have their own agenda the judge was very cagey about their involvement - are telling her and what her doctors are telling her and the family about her diseases progression that has made the judge realise that she does not have full competence to make decisions.

The family are pretty typical in their “you’ll get through this, you’ll beat this thing, you’re such a fighter” encouragement. It’s hard talking about death to your precious child, much easier for them to maintain false optimism, especially when that optimism is reflected back at them.

Sorry, that's rubbish. The duty of a parent in this awful situation is to gradually, over time, help your child come to terms with the future that is facing them. .Keeping up a facade that Jesus will make it all better isn't good parenting and will leave her unprepared for an inevitable death. That's like saying that Gard, Evans and Battersbee had good parents, because they fought to the end. The good parents are the ones who, day in and day out in PICUs round the country, take on board and understand the medical evidence and allow their kids to go with peace and dignity.

She is well aware she could die. Her whole point is she would rather die trying to live than just sit around waiting to die. She is very aware she could die at any time.

yes but she has no real idea of what 'die trying' means - the judgment is pretty clear that she has no idea of e.g. what the journey would entail.

• She is able to mouth/speak her words (para 38)
• she is able to move to the extent of being able to give a thumbs up (para 8)

She is very incapacitated, but she's certainly not locked in and she is capable of communicating.

Having read the judgement, she seems like a young adult trying to come to terms with a devastating prognosis and clutching at straws. I don't blame her, and I dont imagine she's in the minority in clinging to hope. We all know that Canada probably can't happen and even if it did, would be vanishingly unlikely to save her life, but I feel it's her call to make.

In the same way, lovely Pamela who touched so many of us, took a tiny chance rather than accepting what she'd been told. She was supported and I'm glad she got the chance to try.

Irrespective of Canada and other pipedreams, I don't see why the NHS should withdraw life sustaining treatment from someone who is lucid and correct they want the treatment to remain. No she's not going to get better, but it's surely you get whether her quality of life is worth it. It feels like she is too expensive to keep alive, and yes, comes close to involuntary euthanasia in my opinion.

On a side, but related note, I was recently reading about the development of insulin for diabetics. Before insulin was invented it was a terminal disease and the only way of slowing it down was a near starvation diet. With that they could live 6-12m. The first person to receive insulin was so weak he was carried in by his parents. He'd survived 2.5years, so way beyond expectations. His life was saved. Yes, this was back in the days before proper clinical trials, but it took 2 months between insulin first being extracted to it being used on a human (the boy above).

I'm not saying that this mitochondrial disorder can be cured like this - it also clearly does a lot of non reversible damage to the body, but miracle cures have in the past come whilst desperate people have waited, and if someone wants to try, that's up to them. I guess its the saying that where there's life there's hope. And ok, say she survives for 3 months, then thats 3 months more than her medical team want to give her. That 3 months is everything to her. That's why we give life extending chemo in terminal cancer surely.

I wasn’t approving of the strategy, just saying it’s fairly typical, I saw it a thousand times as a cancer/palliative care nurse.

Well, palliative chemo was named recently as being one of the treatments for which there is no evidence of benefit, in fact. I'm not sure why it still gets given, though I assume there is some variation depending on type of cancer.

Dialysis is pretty brutal. It's hard to maintain as a treatment. Maybe it's becoming an increasingly knife edge balance in terms of the damage it does to her and the benefit it gives her.

It gets given for money, usually. Doctors have ended up on the wrong side of the GMC for doing similar things - this one was local to us.

https://blogs.bmj.com/medical-ethics/2022/11/13/saviour-or-sinner-why-the-case-of-justin-stebbing-matters/

And TBH from the very start of the Pamela threads my only thoughts were 'poor woman, this isn't going to prolong her life but fill her remaining time left with travel and painful treatments'. It didn't touch me other than to think evil thoughts about whichever consultant's pocket she filled.

But you can't define what gives people peace. Some people live their whole lives with pain. But they still choose to live. Some accept human suffering as part of the journey and the human condition and not something that takes away their peace. People have different mindsets. Sure, some are happy and ready to check out as soon as it is clear they have a terminal illness and that for them is peaceful. Others want as much time on earth as travel, time with friends and family and whatever gives them purpose and meaning is what brings them peace despite suffering.

Your bias is that life isn't worth living as soon as there is pain or suffering and that one should choose a quick and painless death as fast as possible and for you that is what you see as peaceful and the way to go. That isn't everyone's view of death and dying or peace.

Hmm I often feel like we have far too much faith in decisions of authority including courts. They can get it wrong & there's a gagging order so no-one really knows what's going on.
I mean people are considered to lack capacity when they don't. It's easy with some conditions for example. It really doesn't mean that this girl lacks capacity because she's not accepting that she's dying, many people would not accept it. Even more would have a breakdown or her very angry with people blocking support.

What we do know is that this is a family experiencing a lot of pain.

This. I agree with this.

I didn't engage on those threads as my first thought was exactly that.

Poor woman had been told by an NHS consultant the truth, it was an unbearable truth but it was the truth from the very beginning.

Some of the procedures she was put through were cruel and any ethical oncologist or palliative care doctor could see immediately they had no chance of success.

Unfortunately a lot of my patients go to that clinic and similar and they will always take your money.

And TBH from the very start of the Pamela threads my only thoughts were 'poor woman, this isn't going to prolong her life but fill her remaining time left with travel and painful treatments'. It didn't touch me other than to think evil thoughts about whichever consultant's pocket she filled.

I understand your point of view but I'll respectfully disagree as I know the consultant in question. They also work for the NHS and do a lot of cutting edge research. Not every private consultant is there to extract every last penny from unwitting patients.

It is not a “gagging” order. Cases in this court are always conducted in anonymity. It is a convention that is respected by the press because it is done to protect vulnerable people from exploitation and unwelcome publicity.

Very true. But I wonder if Pamela, if given a crystal ball and able to see the likely outcome, would have chosen to do the same. And she was providing her own treatment. A lot of time, energy and money will have gone in to trying to explain the situation to this family. And be under no illusions - others will have died, because that ITU bed wasn't available.

It strikes me that she would never be able to get to Canada as she relies on a ventilator and dialysis to exist. I think the Doctors are working hard to help her understand she has palliative care. They are working to make the end of her life bearable. I doubt she could go further than the ward she lives on without huge amounts of medical support. I do know people who've seriously outlived the odds they were given but I suspect she may end her days on the same ward.

I've just read a news report that states the 19 year old woman and her family are now directly appealing to the Health Secretary about all of this. The report states that it was the NHS trust which applied for the reporting restrictions to be applied.

I suspect that is down to lazy journalism. As I understand it, it is the norm in the Court of Protection for the patient not to be named to protect their confidentiality. Or it could be that the Trust included that routinely in their original application, in the same way as people do for cases concerning children.

It is clear that no-one has been "gagged" as they claim, otherwise the patient couldn't have given an interview to the Mail.

Irrespective of Canada and other pipedreams, I don't see why the NHS should withdraw life sustaining treatment from someone who is lucid and correct they want the treatment to remain. No she's not going to get better, but it's surely you get whether her quality of life is worth it. It feels like she is too expensive to keep alive, and yes, comes close to involuntary euthanasia in my opinion.

No decision to withdraw treatment has been made. However, it doesn't sound as if it is as simple a choice as just continuing with treatment or not; there comes a point when the treatment itself has unavoidably caused damage that can't be reversed and that will only get worse. Certainly full time haemodialysis isn't a benign treatment, and ventilation also carries major risks including muscle weakness, pressure sores, sepsis, pulmonary embolism, and hyperactive delirium. We come back to the basic principle that doctors are required to do no harm that can be avoided.