Court of protection medical case re 19 year old student

[MrsFionaCharming]

https://www.dailymail.co.uk/news/article-12462943/I-want-die-trying-live-Teenager-rare-genetic-condition-fights-court-NHS-trusts-attempt-withdraw-life-saving-treatment.html

I’d be really interested to hear other people’s thoughts on this, as I feel like I must be missing something.

The purpose of palliative care is to make people comfortable and peaceful as they pass, but surely someone who doesn’t want to be there and still wants to peruse treatment is never going to be comfortable and peaceful there? So it defeats the point.

And it’s not like she’s demanding those doctors treat her, just that she be allowed to travel to doctors who are willing to.

I understand it’s different in cases where it’s parents arguing for treatment of minors, because then the doctors / courts act in the best interest of the child. But this is an adult, who is deemed to have capacity. And one of the basics of consent is the right to make bad decisions. So even if it won’t help her, and isn’t in her best interest, surely she should be allowed?

I wonder whether it’s the travel to Canada that’s part of the issue at stake, because presumably she’d need to travel in an air ambulance of some description with medical staff.
Is her family expecting the NHS to provide that, for example?
Perhaps her doctors don’t believe that she’d even survive the journey. ☹️

I was wondering about the mental capacity assessments, who wrote these regarding the woman's decision for treatment in Canada and when they were written? There seems to be some question around capacity on this decision as the Court states she doesn't have capacity to decide on this at this point.

I also thought about how she would travel to Canada with medical support and the coatings of this? I'm not sure on these points.

Costings not coatings

I'm trying to imagine what it would take to stabilise someone who needs dialysis and a ventilator (plus has a PEG) for a journey like that.

Reading the bit about her not believing what the doctors say, I would guess that she has had discussions about the nature of her condition, the benefits of the treatment, and the risks of the journey, and has said she doesn't believe the risks, or that her condition could be reversed by the nucleotide treatment. If that's the treatment discussed before in a previous case, at the time at best IIRC it had slightly reduced the amount of each day a few patients were spending on a ventilator. I'm not even sure there was clear information about the conditions it was being tried with.

Im with the doctors but fully recognise this is very hard. Poor woman.

I don’t like the idea of anyone foregoing medical treatment simply due to cost, but she’s clearly desperately ill and her doctors may believe that long distance travel will prove fatal and agonizing for her.

how on earth would she get there??? she is on ITU, ventilated, dependant on dialysis and is described as "actively dying" ...it's not possible for her to be flown anywhere. Denial is very common in palliative care and this is an extreme example that unfortunately has reached the court even though it is utterly fruitless and I despair when the christian legal centre wants to prolong this sort of legal challenge ...she would probably have more of a case to argue about the withdrawal of dialysis and move to palliative care.

Sounds more like she'd be dead by the time she reached the carpark but she doesn't believe it.

The functional test for assessing capacity is this-
Does the patient understand the information relevant to the decision?
Can the patient retain the information for long enough to make a decision?
Can the patient weigh or use the information to come to a decision?
Can the patient communicate a decision?
The article suggests that her refusal to accept the reality of her situation means she is unable to understand the relevant information and is unable to use it to make an informed decision and therefore lacks capacity.

She doesn't sound well enough to travel. The other part about withdrawal of dialysis I feel more conflicted about. I'm uneasy about medics withdrawing active treatment from someone who wants it and is able to consent to it. Not sure about their argument that she is "delusional" because she doesn't agree with them. That seems a bit of a slippery slope.

If she is “actively dying” she may well be approaching the point where dialysis is no longer medically safe, or indeed possible (low blood pressure etc). If she and her parents refuse to accept that, the trust may be keen to get the courts to rule on it.

She doesn't sound well enough to travel. The other part about withdrawal of dialysis I feel more conflicted about. I'm uneasy about medics withdrawing active treatment from someone who wants it and is able to consent to it.

I agree with this. But with the massive caveat that I have no medical training so it may be that dialysis can become literally impossible or damaging for some medical reason I have no idea about.

If she is actively dying why do the State /NHS get to manage her death?

I can see an argument for not funding her treatment when the treatment is nolonger providing a medical result. I can see the ethical reasoning for not subjecting her to medical treatment when the resources would be better allocated to others in the population

But why should a NHS doctor get to decide how she dies if she is not using public resources?

if she (her family) has the financial capacity to hire the equipment needed move her out of the hospital why should the NHS get to stop her from leaving the hospital and die as and where nature determines?

If it is in her family home or at the airport or on the flight or in Canada why should the NHS get to stop her when the doctors admit they can not provide "healing" medical care.

If she refuses to accept that she is dying why is her capacity so relevant when the NHS is only going to provide care for a pathway to her death. She is not going to be given a choice on that either, is she

This

I suspect this may be true. I was involved with a complex situation some years ago where a court ruled that someone didn't have capacity because instead of saying she accepted the risks involved in her decision, she denied that there were any risks. Very hard.

I can't find anything online about any centre in Canada offering any kind of treatment - just some clinical trials, most of which are closed.

She's too sick to travel.

What is she and her family hoping to achieve?

The time to travel is a long time ago, she won't make it to the airport in the state she's in right now.

Yeah she's an adult and has made it 19 years with a terrible affliction. It's her money and they should let her try. She's going to die anyway why shouldnt she have one last stab at life. Totally different from the babies under NHS care with similar terminal conditions for me.

It does seem really different from the others that have been in the news...

It seems very wrong to deny someone who has been deemed to have capacity by some psychiatrists and no capacity by the courts the right to make their own medical decisions, no matter what the outcome is.

I know that flying her to Canada in a specialist ambulance will cost megabucks as will the treatment itself and wouldn't be funded by the NHS. I'm guessing the family doesn't have that kind of money but might be able to crowdfund it.

If they withdraw her dialysis she will die fairly quickly.

She wants to join clinical trials but is there any evidence she would be accepted on them given how ill she is? Perhaps this is where the ‘delusion’ comes into it.

Has she actually been accepted onto a trial in Canada? I can’t see whether that’s the case or not in this report.

I don't think so, but this is another Christian Legal Centre case, that twlls me a lot.

They are very much, "life at all costs", anti abortion etc.

It's sad that she has this horrible disease but she is going to die and she will die soon.

She's on a ventilator and dialysis. Ventilators can and do cause damage to the lungs, increase the risl of blood clots and cause a pnumothorax.

Dyalisis can also have complications.

It's not just about her having capacity, even if she can get an air ambulance she will need to be certified as fit to fly.

But the mechanics of keeping her alive is not an NHS's "poblem" if she has doctors willing to put her on hired equipmemt and certify her for flying.

If the State agrees that she is dying I think it becomes a question of who gets to choose how she dies.
On an ethical basis I think the NHS gets to say when their service stops being about life saving medical intervention, they go to court if it is a debate over removal of that care.
But I think that once the doctor's agree that any care's sole purpose it to assist in a death pathway for an adult; then the NHS should not be able to withhold that adult's liberty to leave the hospital and organise an alternative (no matter how stupid) death pathway. I do hope the Courts are careful that if is not giving the State a right to mandate whole life death medical care.

if she has doctors willing to put her on hired equipment and certify her for flying - she doesn't

There isn't a doctor on this side of the Atlantic who will do this and they can't afford to rent the equipment, hire the necessary staff or rent the plane for long enough to get to Canada, travel to any clinic site and wait for the Canadian doctors to hook her up to life support over there.

Even if she did, what's going to happen on the tarmac in Canada?

There don't seem to be any nucleoside therapy trials taking on new patients

Is she just going to sit there, with her family touting her round the clinics?

It's absurd.

She's at too late a stage for any experimental 'curative' intervention to be of any use and the clinicians running the trial will learn nothing of value to them (the whole reason trials are run)

It’s the court of protection that makes the decision, not the doctor dealing with her.

She has only been recently diagnosed. I’m pretty sure, as a student, she doesn’t have the ££££££s that it would take to transfer her in an air ambulance with a full intensive care team across an ocean!!! Are you willing to fund it?