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?

As far as I understand it from my own care where I had to argue (successfully) that I did have capacity at one point, a patient must be assumed to have capacity by default. We aren't supposed to start from the point of view that they don't have capacity and go from there. I'd suspect that's where the two psychiatrists are coming from with their assessments. Also, if it's delusional to have hope, then everyone is delusional or suicidally depressed with no middle ground, so I don't know how she can be labelled as delusional, specifically, for her unrealistic ideas, even if it's extremely unlikely they'll come to anything.

It's a very sad case for everyone involved. I would like to think no doctor goes to work in the morning wanting to deal with a situation like this let alone have to legally fight a patient and their family over it.

Also, if it's delusional to have hope, then everyone is delusional or suicidally depressed with no middle ground, so I don't know how she can be labelled as delusional, specifically, for her unrealistic ideas, even if it's extremely unlikely they'll come to anything.

It's one thing to believe in a treatment that might not work, it's a different ball game though if someone believes they'll be fine undertaking something that will kill them before they even get a chance to try for their last hope treatment. I don't know if that's the case here but it reads as though it is. The doctors don't think it's a possibility to get to Canada alive let alone any sort of hope of treatment. There's a point where reality overrides hope, and it becomes delusional to not believe the reality.

I think the point here is that she is deteriorating inexorably, despite maximal intensive care support, without any prospect of her quality of life improving, or, ever being able to be independent of an intensive care environment.

Believe it or not, these situations are fairly common, especially in elderly patients where after a period of maximal care, with no prospect of improvement, it is determined that withdrawal of ventilation is appropriate. The main difference is that in these situations, the person is either unconscious, or so unwell as to lack capacity, and either an advance directive or family are on side with the decision.

This is harder being a young person and there being dispute between the family and medical staff, but legally, ethically and morally is no different.

There is a difference between saying I understand the risks and I am willing to take them and the risks don't exist and I'll be fine.

Or, as I suspect may be the case for the vultures who have circled 'The risks don't exist because I'm not going to die, as God's going to fix me'

Unfortunately that's a possibility. Never I've come across similar, before.

Hhhmm this is a difficult one.
I feel like her choice to decide to try and seek treatment abroad, against expert advice, and the realities of arranging to get abroad are 2 different issues. I thought one of the things mentioned in legislation about capacity is the right to make bad decisions (or some kind of wording). After all most people who have capacity do make bad decisions at time. I do think it’s an overstep if the court has decided she doesn’t have capacity based on her making a bad decision or ignoring medical advice.

The court could say she has capacity to make her own decisions around her medical treatments. That’s not to say that she will be successful in arranging all the practicalities involved with travelling with her illness. Surely the airlines wouldn’t allow her to travel anyway would they?

The court's decision that she lacks capacity is not due to her making a bad decision. It is due to her refusal to believe the information given to her by her doctors. To have capacity, she must understand the relevant information, remember it and use it to make a decision. The court decided that her refusal to believe the information means she fails this test.

At this stage, the treatment abroad is something of a red herring. The question the courts will consider is whether the NHS can move her to palliative care as her doctors recommend, or whether it should continue to extend her life until she can travel to Canada where she might get accepted onto a clinical trial for a treatment that may help her. She does not have a place on the clinical trial, so no actual move to Canada or anywhere else is in prospect currently.

It would be a Medical transfer by private plane.

The whole plan seems based on:

Getting a provider prepared to fly her to Canada
Having a hospital in Canada prepared to take her
Enrolling on a drug trial in Canada which currently isn't running, it isn't clear she is eligible and has been told there's no chance it will help anyway

And doing a public fundraiser to raise enough money to pay for all of this.

Personally I would have been inclined to let her and her family have a go and find out it isn't possible

“The court's decision that she lacks capacity is not due to her making a bad decision. It is due to her refusal to believe the information given to her by her doctors. To have capacity, she must understand the relevant information, remember it and use it to make a decision. The court decided that her refusal to believe the information means she fails this test.”

^I see. I still find that a little problematic. Is refusing to believe information being given the same and not understanding it? She might understand what she is told but decide that she doesn’t believe it. Actually quite a lot of people do that. If not agreeing Is the same as not understanding then Wouldn’t this mean that anyone that disagrees with the opinion of specialists could be considered to lack capacity. I dunno, just in and of itself that doesn’t feel right. Especially when she Is dying anyway and unlikely to be able to follow through her own plans…what is the benefit of the process of going through court to find her lacking capacity?

That’s what I felt. If she is dying anyway why not let her try what she wants to try. It’s not like she’s refusing treatment that would keep her alive. Even if the concern is quality of life up to her death is making her go through a court process and taking away her choice giving her any better quality of life up to death?

That is a very sad story, unlucky young woman.

Someone (who knows who?) would pay for machines & transport & doctors.
Assuming she wasn't rushed back into an NHS setting almost immediately after her so-called discharge, She would die within 48 hours of moving out of the NHS hospital, in great distress.
NHS would be blamed for her undignified death.

NHS can't talk about individual patients so they can never defend themselves.

@Embarrassednamechangeadoddle as @prh47bridge points out it is a 2 step process

Step 2 is the removal of the extra care she needs to "live"
The NHS position is that the time has come when they are no longer obliged to provide some of the existing elements which would extend her life beyond the time that her body can sustain.

In order to ensure that she has proper representation in step 2 it is ethical that the hospital establish that she could fully instruct her legal team.

So if she is only going to instruct on the basis that she is going to Canada her legal team may be instructed not use an alternative "winning argument". Or the hospital may also have a concern that the legal team is not "her team" but using her as a test case. Etc etc
In the end the hospital worried her tunnel vision would harm her ability to argue her case.

In any instance having someone who can not effectively counter the hospital's case puts her at an immediate disadvantage.

So as step 1 ( to "even the playing field" ) the NHS asked the Court to appoint someone who can take a holistic approach to act in her best interest.

Thank you for the link @prh47bridge.

That was not an easy read.

My sort of summary is that ST and her mother believe she will get better and her disease will be cured.
She believes her deteriation is not due to the disease but the way the Drs are treating her.
The Dr's are willing to send her medical records to the US or Canada but only to actual physicians.
There have been no trials on the particular disease she has, but there have been trials on a similar condition and at a much earlier stage.
ST has had at least two respiratory arrests and her lungs are damaged.
The Drs believe she has a 25% chance of living until October when new trials might be starting in Canada.
ST and family want reporting restrictions lifted so they can fund raise.

It's a terrible situation for everyone, ST, family and medical staff to be in.

Resusitation is brutal and I can understand why the medical staff want to move her to palitive care.

Obviously the Christian Law Centre have their own view.

https://christianconcern.com/news/judge-rules-conscious-19-year-old-cant-make-end-of-life-decisions/

what i always find utterly ironic is how fearful of death must people be, who support the Christian Law Centres view of things? i can understand an atheists fear of nothingness but when you have are strong Christian beliefs and you know your family member is going to be released from the pain and suffering in their earthly body, surely this would be of some comfort? I would prefer the CLC highlighted the everyday life and death decisions that go on in hospitals ,sometimes as a result of lack of staff and resources ,across the country rather than fixate on people who the NHS cannot "fix" despite having tried everything to improve their situation.

That's a good summary. I would add that she does not accept that she is dying. She, wrongly, believes that her requirement for mechanical ventilation comes from long Covid rather than the progression of her mitochondrial disease. She does not accept that, even if she does receive the experimental treatment, there is no realistic prospect that she will improve enough for mechanical ventilation to be removed. Indeed, she does not accept that the prospect of her being accepted onto any clinical trial is vanishingly small due to the advanced nature of her condition.

I would also point out to those talking about the NHS holding her against her will that there is no prospect of her moving to Canada or North America at the moment, but the NHS was clear that it will not stand in the way of a transfer to North America. However, that is dependent on the family raising sufficient funds and on her being accepted onto the clinical trials when they restart.

The judgement is indeed difficult reading. Such cases always are. The information that appears in the press, written by journalists who don't have time to understand the case fully and who are trying to summarise the information in just a few short paragraphs for typical readers (and, in this case, coloured by the views of the family and the CLC) always miss out lots of relevant information.

I don't envy the judge.

i can understand an atheists fear of nothingness but when you have are strong Christian beliefs and you know your family member is going to be released from the pain and suffering in their earthly body, surely this would be of some comfort?

Some people are like that my mother was, which is why I had a medical power of attorney drawn up so if I was ina coma she would not be able to keep me living for a prolonged period of time.

I remember arguing with her when Tony Bland's parents went to court. For those who don't know Tony Bland was in the crush at Hillsborough and was in a persistant vegetative state. After 4 month his parents wanted treatment withdrawn, the medical staff agreed but had to go to court as there was a potential murder charge.

It took four years for the case to go through various corts and appeals.

My mother was absoloutly adamant that a miracle could occur so treatment should continue.

Not sure why there is a wikki link

She has been found to lack capacity because she does not believe what the experts are telling her about her condition and prognosis. She cannot therefore, make decisions based on weighing the information because she doesn’t believe the information she has been given. Her views are utterly unrealistic.

it’s very sad and her inevitable death will be all the more difficult for her and her family because of their refusal to accept it.

if she wanted to try at all costs, having understood the options and possibilities then that would be a different case. She refuses to accept what the options and possibilities are. Which is why the court will have to decide which treatment plan is in her best interests.

what i always find utterly ironic is how fearful of death must people be, who support the Christian Law Centres view of things? i can understand an atheists fear of nothingness but when you have are strong Christian beliefs and you know your family member is going to be released from the pain and suffering in their earthly body, surely this would be of some comfort?

@Justgonefishing I agree. My Mum wasn’t a churchgoer but had a belief in an afterlife and that really helped her when she was dying. It’s hugely ironic that the CLC is encouraging this poor girl to pursue this case- don’t they believe in Heaven and that she’ll be free from pain?

If they've spent lifesavings on lawyers I wonder how they plan to fund travel to and treatment in Canada.

It's very sad.

The very definition of ‘delusional’ is having false or unrealistic beliefs or opinions, or maintaining fixed false beliefs even when confronted with facts, usually as a result of mental illness.
She has false beliefs as to whether she can survive this illness or not despite being confronted with indisputable facts. That is why she is deemed to lack capacity in this specific area.

So she's compos mentis and understands perfectly well, by the sounds of things, that the decision has been made to let her die.

Jesus, only 19 and being written off. What a position to be in. And so many people being blasé and going "yeah, well that's ok". I suspect those wouldn't be so accepting if they were in the same boat.

No decision had been made to “let her die”. She is dying, her condition is terminal & irreversible & as it stands there is no cure for what she has - that is what she is unable to accept. I completely understand why she & her family don’t want to believe it, I wouldn’t either but that is the reality.

They intend to try crowdfunding for that. They have applied for reporting restrictions to be lifted so that they can go ahead with an appeal. That application has not yet been heard.