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?

This is clearly a difficult case. On the one hand we have two psychiatrists suggesting that she has the capacity to make choices for herself. On the other hand, it appears she does not believe the information given to her by her doctors. As @AnotherVice says, that means she appears to fail the functional test for having capacity to make decisions about her medical treatment as that requires her to understand information about her decision, remember the information and use that information to make a decision. I don't envy the judge who has to make this decision.

I have little time for CLC. They have had some successes, e.g. with a student social care worker who was removed from his course for quoting the Bible on social media. However, they have had many failures and their involvement in the Alfie Evans case was rightly criticised by the judge as doing the parents far more harm than good. Their involvement in the Archie Battersbee case led a consultant to comment that they prey upon families when they are at their most vulnerable.

The cost to move her with a full intensive care team would be astronomical, along with the ongoing care in Canada, for what benefit?.
Has she been accepted for a trial? Is the trial been shown to have any benefit for her condition?
As sad as this is, the NHS cannot pay for every last gasp treatment that people find on the internet. Its unrealistic.
But the CLC are involved again. Those ghouls really need a restraining order with these kind of issues, they cause nothing but trouble. They just use families in heartbreaking situations for their own agenda. Its cruel.

It is her decision. She should be able to make it.

I know that the State via the Court make the decision but it will be based on either, what the NHS is willing and able to provide or by what she (her family) can provide.

The NHS is not asking for permission not to "treat her" they are asking the court to grant them the right to hold and treat her with non-lifesaving care.

The NHS said she is dying and the doctors can and will do X or Y to assist in the dying process.

She said I dont think you assessment is correct however I dont want you to provide any care I have made my own arrangements.

The doctors are saying we dont agree that you should be allowed to leave but we can not provide an medical treatment to extend your life, and nature is not going to decide when or how you die our pathway to death policy will manage that.

This is not her or her family demanding that the State/NHS provided life extending care, or that she should be free to leave against medical advice with a lesser chance of survial so the NHS have carried out their duty of care rather its that the NHS hold her without freedom untill she dies on the NHS's time table.

Its the proposed control over her death that I have issue with. What if she just wanted to transfer to a private hospital and die there, would her NHS doctors have a duty to take her to court to stop that

How about she wants to go to her house or a park or the seaside?

The doctors argument is not that any care they give her will extend her life. They are stopping lifesaving care.

They say she is actively dying but they should have the right to hold her and medically manage her death.

Thats a big jump from forcing somebody to accept blood during a lifesaving operation.
Or even turning off medical equipment and letting nature/her body determine the time of death.

@AnSolas i think you have a mistaken idea both about what happens at end of life and the level of care that this person currently needs to survive. What do you mean by a "pathway to death" programme? I'm an ex-palliative care and hospice worker and even for those who really do want their end of life process speeded up, if nature isn't already taking its course then its not possible to get any doctor to do this. All the ITU doctors probably want is for the poor girl to spend the end of her life in an calm and peaceful environment where staff are trained to support people as they die and support their family, rather than on a noisy, artificially lit ITU where alarms are going off ,its not a place most people would choose to die.

She's "actively dying", means all of their best efforts at life maintenance are failing

To 'survive', she'll need ever more painful and invasive procedures, she'll need sedation (hastening death), strong pain killers (clouding the last thing she has left, her mind) and what little discernment and cognitive function she has left will be gone.

Either way, she's going into a coma, whether she likes it or not and 'fighting' this will simply distress her and her family.

If she does go home or to the seaside, she won't be able to see or know about it

I'm afraid you have completely misunderstood the case.

This decision is entirely about whether she has capacity to make decisions about her own care. Having decided that she does not have capacity, the courts will next consider whether the NHS must continue to provide life extending care, which is indeed what she and her family are demanding. If there is a successful appeal, she will have the right to decide her own treatment so will be able to insist on life extending care. It is also possible that an appeal might rule that, whilst she does not currently have capacity, she did have capacity at the time she gave lasting power of attorney to her parents, in which case they will be able to insist on life extending care on her behalf.

Whilst she hopes to travel to Canada or North America where she might be accepted onto a clinical trial, this is not about whether she can make the journey and it is absolutely not about the NHS holding her without freedom. It is simply about whether the NHS must keep her alive long enough to make the journey. Neither she nor her parents have asked for her to be moved elsewhere at this stage.

For those interested, the full judgement can be read at University Birmingham NHS Foundation Trust v ST & Ors - Find case law (nationalarchives.gov.uk)

She's been deemed to lack capacity.

Thanks for this explanation.

I was reading yesterday about the definition of 'capacity'. The crux was that in cases like this, whilst the patient may have the capacity to request alternative treatment, she does not have the years' of expert training that her medical team do to understand the complexities of her condition, current state and prognosis. DOES she really understand the risks involved in transferring her to Canada, does she understand the risks involved with this alternative treatment plan?

A tricky one, for sure

Yep I suspect this is the problem. Harping on about a mythical trip to Canada which will completely cure her. We haven’t heard from any Canadian physicians keen to accept her for their clinical trial, have we? I suspect they either haven’t been approached, or have turned her down, and her refusal accept this is why she is being labelled delusional.

Because psychiatrists are not particularly well trained in assessing mental capacity in many cases. The court of protection is the ultimate decision-maker on questions of capacity and what is in her bests interest. Experts have come to different conclusions on her capacity, thus the court makes the final decision.

If she lacks capacity (which has been concluded) then the court has a legal responsibility under the mental capacity act to make a decision in her best interest. They have deemed such travel and treatment is not in her best interests

The law is designed to protect people and enable them to make their own decisions wherever possible and act in best interests where it is not. And it is applicable to us all

This is not how capacity works. She doesn't have to understand it to the extent of a trained dr. She has to understand it in the same way as the average person on the street. If she has been deemed to lack capacity then she cannot understand and weigh to the same extent as your average Jo. It is against the law to hold her to higher standards than that

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?

I this demonstrates a complete lack of understanding as to what this would actually entail.

The NHS is not stopping her from leaving the hospital. The question is whether the NHS has to continue to provide life extending treatment. That is what the courts are deciding. Neither she nor her family have asked for her to leave hospital. Yes, that is the ultimate goal - to take her to Canada in the hope of getting her onto a clinical trial that might help her. But all that is being asked at the moment is whether the NHS must continue to provide life extending treatment until such time as she is able to travel.

Having read the judgment I am surprised it was decided she lacks capacity.

I don't feel it was proven that she has a disorder of brain or mind.

She isn't behaving differently to a lot of terminally ill patients I see: believing that because they got through one crisis they always will, wanting to explore experimental treatment and thinking it might cure them even when explicitly told it won't.

The main crux here is they don't have the money to get to Canada let alone stay there - family are hoping to do all this on a fundraiser. And it's not clear that she is even medically fit to travel there as her care is so complex.

But all that is being asked at the moment is whether the NHS must continue to provide life extending treatment until such time as she is able to travel.

Ah, that makes more sense. Her doctors clearly don’t believe that she’ll ever be well enough to travel so hence they’re saying she should now move to palliative care.

I can understand why she/her family don’t want to believe this. ☹️

I waa not suggesting that the NHS doctors were going to murder her (assisted dying). She is in a hlgh dependency unit with machines and medical intervention needed to sustain her life. ( From the "hidden" care of be moved to prevent pressure sore infection killing her, to maintaining her airway to allow the machine to push O2 to keep her fingers and toes from dying etc etc) Depending on circumstance her medical team could keep her body functioning for a time after her brain has died.
So she is not receiving "ordinary" medical treatment.
While the hospital remove the extra care they are going to offer "ordinary" care so an agreed palliative pathway which would end in her death in hospital setting or she could choose to leave the hospital.

So the article was misleading and/or I misread it.

As @prh47bridge ( thank you for the elegant summation) points out she and her family want the NHS to contine to provide the current level of care where she had no hope of getting better and is becomming less stable as her body has begun the process of shutting down. So the NHS is asking the Court to give them permission to stop all "life saving prolonging" treatments and therefore rightly want the Court to decide how she is represented in the whole process.

No it is asking how much control the State should have over the death process.

If she died the second she was transferred to non-NHS care and was aware that she has a 99.99999% risk of death and did it anyway once it was an informed choice why would the NHS/State have a right to take that decision from her

Or if she had accepted her death and she requested everything be switched off so a 100% risk of death.

Both of those are very different to demanding the State provide a delay period of time as her organs to fail in a cascade.

Obviously the article doesn't go into complex detail about her condition, but generally if she has been in ITU for a year its highly likely she will die when she is removed from the machinery keeping her alive. Simply withdrawing those interventions is often more distressing and painful for the patient than if it's 'managed' via a palative pathway- it doesn't mean they're planning on effectively euthinising her, its making someone more comfortable as the natural process takes place. Doctors make decisions based on the medical history and the parameters of the care that can be given, it's all very well saying its her choice but from an ethical point of view its tricky. If she isn't accepting that she will die (it's insinuated in the article) then she can't make an informed decision which puts the doctors who do know given their expertise in a horrible position. If a court decides then it rightfully takes that responsibility out of their hands. It's not unusual at all for patients and their families to want to try all they can; most of us would.

If she died the second she was transferred to non-NHS care and was aware that she has a 99.99999% risk of death and did it anyway once it was an informed choice why would the NHS/State have a right to take that decision from her

From the article it seems the issue is she doesn't accept this.

I still Don't see how that means she doesn't have capacity.

I have loads of patients who I can't have a sensible conversation with beyond 'I'll beat it' 'I'll prove them wrong ' 'I'm a fighter' 'it'll be alright ' and numerous variations on the same theme.

I don't class them as lacking capacity, just coming to different conclusions or not listening to a word I say

I don't know the official answer, but I'd personally view there to be a difference if it was someone refusing some sort of treatment and someone wanting to come off of life extending care because they don't believe they'll die without it. Obviously we only know what's been reported so not claiming this is what's happening. Doctors are rightfully covering their backs also.