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

They clearly don’t feel the last six months of her life had any value

It might be nearer the mark to say quality rather than value, and if so - and after reading the court report - it's hard to avoid concluding that they would have a point

I think there are a lot of able-bodied people who feel people with severe disabilities don't have any quality of life. However, the people with the disabilities seem to feel differently in many cases.

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

I've also been wondering about the practicalities of flying her to Canada, if, and it's a big if, the trial resumes and she is accepted on it. No one could compel NHS staff to do it, so they are left with private companies. Most do repatriation once a patient is relatively stable. Would any be equipped or willing to do a transfer like this?

Which begs an interesting question as there are a lot of people with very low quality of life, many of whom are fully reliant on others and on medical treatment. Culling that population would certainly free up $$, care beds, and money spent on treatments and caregivers.

She still feels and her family still feels she has some quality of life given she is conscious and alert and can communicate with them. There are some people who aren't even able to do that who are kept alive for much longer than a year.

Amen @viques.

Yes, I read the article. The point I am making is that the patient and her parents feel that if she is given the treatment , which they describe as being oral meds, all will be well. I know she can't just go to Canada , I feel they don't actually understand that the treatment is probably experimental, has little chance of making any difference , and if it was tried and tested could be provided for her in the UK by the NHS sourcing it. In other words they are clutching at straws.

Doctor's working in the UK are still subject to the 'rules and guidelines" of the GMC- General medical Council.

Regardless of working in the NHS or privately, there's a governing body and anyone wanting to practice legally as a Dr has to be a member.

I think it's pretty clear the option of going to Canada or the US is a non-starter.

From the court judgement, she believes that she may recover enough not to be completely reliant on ventilation. However, medical evidence suggests her respiratory muscles are deteriorating further.

It wouldn't be possible for her to be transported by air in her current state of health, and probably her chances of surviving leaving the hospital at all are low.

You’ve completely missed the point.

I don't think you can tell teens or anyone how to feel about their own impending death. It is easy to say she should have just accepted this a year ago and died without a fight or any intervention but that clearly isn't a fit with her view on life or death or her own personality. She sees herself as a fighter, not someone who just hears a doctor say its terminal and rolls over and dies. Some people are not fighthers and want to go as quickly as possible. Others want to extend the time they have and in order for her to extend that time and have this year - she had to fight for it. Being alive is the positive for her. The experts all concluded her family were not pressuring her and she was making these decisions independently because at 19 she wants as much life as possible, even that that life requires medical intervention. I don't think that is that uncommon. We had friends with an 18 year old diagnosed with cancer and he was similar, he wanted to fight it and wanted to live as long as possible even once he was told he was terminal. At that age, they don't just say well I had a good life so end it now when they are told they won't recover. What would be a postive memory for you (an early death with no fight or intervention) isn't what would be a positive memory or end for everyone.

After reading that horrifyingly long court ruling, I have to say I don’t agree that she lacks capacity and understanding of her situation. Earlier in the ruling it stated that she wants to die while trying to live.

Now, I don’t think there’s any chance she survives long enough to join any clinical trial anywhere, nor would I think it’s a good idea to even try, but I don’t think she should be denied her right to refuse palliative care right now. She doesn’t want to take morphine and be rendered unconscious at the moment, but that could change if she becomes uncomfortable enough.

I think saying someone who is lucid and able to discuss their illness can’t make their own medical decisions is a very slippery slope.

Withdrawing dialysis and implementing morphine against someone’s will, is essentially the first steps to non consensual euthanasia. I am a huge fan of a person’s right to die with dignity, but only if it’s their own choice.

But why would someone else be allowed to decide what quality of life is good enough for her?

The report is much more scary than her not being 'allowed' to go to Canada IMO. It basically says that because she won;t just accept that she's going to die very soon, she must not have capacity - and so the hospital should be allowed to pull the plug (stop dialysis) so that she dies even though (as it says in the report) she may still have weeks or months left to live. Basically she is not allowed hope, having hope, wishing for a miracle - that now apparently means you don't have capacity. They should tell the crowds at Lourdes that.

I am really, really pro euthanasia - but definitely not in cases where someone is clearly communicating that that is not what they want! If she wants to continue the treatment she's having rather than having the dialysis removed and be drugged to death for the resulting pain then why shouldn't she?

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

I am a huge fan of a person’s right to die with dignity, but only if it’s their own choice.

Yes, I think it works both ways- people should be able to have the type of death they want, whether that's choosing assisted dying, or dying earlier with dignity or carrying on until the bitter end.

@SleepingStandingUp With the 15 million her family are raising… we’re raising.

To be told in 21 she had days to live and she’s still alive, if she’s conscious (which presumably she is as the article states her school will allow her to do A levels in hospital) must be torture to still be alive with your only option being to die as fast as you can. She would likely die during travel, but she wants to try to live. I don’t think anyone should be able to say tough toenails- we’re keeping you here to die.

I hope she’s unconscious with no idea what’s happening to her. Reminds me of locked in syndrome- must be bloody unbearable. I’d rather die trying than rot in hospital or any other facility.

*were

Exactly this, I completely agree with everything you say.

There isn't any alternative treatment though. You are talking absolute rubbish! Can you explain just exactly how someone on a ventilator who requires kidney dialysis could make the journey not only from the hospital to the airport, but across the ocean too?

With the level of care required- sue can't even leave the ITU for a ward. And has been in ITU for a year. There is no way she is medically safe to fly, is she isn't even medically fit enough to leave the ITU.

@Postapocalypticcowgirl

I'm just covering the principle. As to whether and to what extent dialysis is beneficial or harmful to her individual case is likely to be complex and it certainly isn't something the public are privy to. I genuinely don't have enough information . But there are a lot of people saying "she should just be allowed to continue dialysis" - this is resting on the invalid assumption that dialysis is always more beneficial than harmful.

Dialysis is complex and invasive with many complications. It may be a recognised medical treatment that is helpful to some patients in some contexts but that's not material if the harms outweigh the benefits or if it is futile in her case. That might be a really complex determination but that's why courts get involved.

As it happens, diathermy is also a recognised medical treatment that is helpful to some patients in some contexts(!)

Except the court ruling was clear that she was not making any ruling or offering any opinion related to treatment or what should or shouldn't be done from a medical intervention stand point. Maybe that is another court case still pending but it wasn't part of this one.

Im.confused about the ventilation aspect
When my son wss in intensive care earlier in the year they were talking about putting him.on a ventilator because he wasn't maintaining his oxygen sats
They said he would be have to be sedated for this and indeed all.the other ventilated patients were unconscious fortunately he didn't need to.be ventilated ,they did give him fast flow oxygen through the ventilator but he was fully conscious

I may have misread something but my understanding was this is about putting a future plan in place if there is another precipitous incident and it's then that the palliative care would start. However due to ST refusal to accept she is actively dying she will not discuss and agree, hence it needing to go to the court of protection.

But that's not what happened or what the medics were likely asked.

They were likely asked 'will continued life support result in improvement in any way?"for the person on life support who is going to die, or their family who have also been informed that their loved one is dying and without the intensive medical intervention would already be dead.

The huge increase in medical interventions available over the last few decades that keep people alive against alll previously 'natural' situations are awe-inspiring but also not necessarily common or something we should fight against when all evidence and sense tells us its alread a sad case that means a young person dies.

Yes it's shit. And sometimes the person that is dying knows they're dying and thinks it's shit. And would cling on to any thing that might give them hope.

@AbbeyGailsParty The NHS is a corporate machine.

The NHS killed my hubby surgeon with skin form of mrsa allowed to operate on patients, this ended up in my husbands led bone and ge died) my dad (he was disabled and had gone in with a chest infection. The nurses left in a chair in the baking heat in front of the window for >6 hours - no water, it exhausted his body and he died) and my cousins hubby (the oncologist knew he had liver cancer but left it >8 weeks to scan the tumours. They were then too big to operate). They have deformed both of my mums wrists - she can't use a knife and fork anymore!

Honestly I am always scepicle about what motivated the nhs to do what they do.

This girls sounds very poorly and some diseases are tricky to treat. She should be allowed to seek alternative treatment if trials etc exist. The NHS has bound and gagged a poorly young person to save their own skin.

I have no empathy for the nhs that we have been left with my successive Tory governments.

Actually I do have a lot of experience with young terminally ill , and life limited young people, and you are right, having a positive end of life experience is not about “no fight or intervention”, but it is about honesty and facing reality, because unless you are honest with young people about treatment and prognosis they lose all autonomy over their illness .

Reading the judgement I got the feeling -by a remark towards the end - that a lot of push for the treatment was coming from the parents, and I understand their desperation, but I don’t think they have been honest with her as her understanding of her illness, as explained by the evidence, seems faulty and incomplete.