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

As a positive from this incredibly distressing death, I'm going to donate to the Lily Foundation who are researching this treatment in the UK.

Link here

Had she never been given any medical care after her terminal diagnosis other than increasing doses of morphine, it is unlikely she would have lived for very long.

But that’s not what palliative care means.

@saffronsoup you clearly haven't understood that the reason Sadiksha remained alive for a year after admission was due to the extent of medical and nursing care she received in the ICU.
You may have worked in a hospital, but not in an ICU, I'm sure, and not as a HCP.

You also seem to think that palliative care hastens death. That is not its goal, nor is your premise correct.

Sadiksha arrested and was resuscitated twice before her final arrest this month. She would have died if these events had not occurred in hospital.
You should not be accusing PP of failing to read the court judgment, when it's clear you haven't done so yourself.

I think if actual photos of this young woman attached to all the various machinery keeping her alive had been released to the media, the media response and public response would have been very different

Not necessarily; once on social media trash sites, I guarantee the posts would have started about how she'd blinked or moved something and that this "proved" she could recover ... you know, from all those with no medical knowledge whatsoever

The family are naturally grieving and it's not always a time when people are rational. However it's all too obvious from their comments that another SM tsunami is what they were aiming for, and experience teaches that this is to be avoided at all costs

"....it's all too obvious from their comments that another SM tsunami was what they were aiming for...."

I couldn't agree more.
The anger and disdain towards the medical staff was very evident.

CPR is a brutal way to go. It could have been better for her and her family.

The anger and disdain towards the medical staff was very evident

Quite I'm not going to criticise parents who'll be reeling right now, but a little less unpleasantness would have been good, especially when the reports showed just how much the hospital had done to support the family

Also, while traumatised parents rightly get some understanding, the same can hardly be applied to the manic "armies", and even on here you could see some posters itching for another fiesta of stupidity and cruelty under the pretence of caring

I think that's the misunderstanding the media seeks to peddle – that palliative care would just be a ton of painkillers. If it were just morphine, she would be dead and gone in 3 seconds flat. How hard is that to understand? Palliative care wouldn't even be part of the conversation.

The judgment states that a great deal of medical intervention would have continued to keep her alive during palliative care. They would only have stopped the most extreme and painful one (also seemingly not directly related to her predicted and actual cause of death which was respiratory, but I'm not a doctor).

It's very clear that many people don't understand the term 'palliative'. To be fair I didn't until the word was used for my late husband's treatment for his stage 4 cancer which had spread through his body.

Palliative care does not mean giving up on someone. It means that the doctors know that they can't cure the condition. However they can still treat it.

My husband's palliative treatment included chemotherapy, and later, radiotherapy. It bought him18 months of good quality time (for most of which he appeared reasonably fit and well) that he wouldn't have had, had he not been treated palliatively.

https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care#:~:text=No.,the%20end%20of%20their%20life.

I was a Macmillan nurse for 20 years, and over that time met a lot of patients keen to inform me they were “not at that stage yet”, in the mistaken belief I’d give ‘em a load of morphine and they’d be dead by the weekend.

…I also had a lot of patients - men, usually - who’d refuse to take adequate analgesia because they believed if they took morphine/other opiates they’d be dead by the weekend.

I’m still not sure the court made the right decision regarding her capacity. They accepted she was not delusional and was well-informed - the main basis of their finding seemed to be based on the fact she wouldn’t accept she was dying.

Everyone deals with death differently and I have known people who have resolutely refused to acknowledge death was imminent, right up to the point they died. It’s just a coping mechanism because it’s a very very scary thing to face.

The law even says making “unwise decisions” isn’t grounds to state a person doesn’t have capacity.

I think also, because ST twice defied the odds to survive when doctors told her death was imminent, it buoyed her up and lessened her trust in their judgement. Again in her circumstances it’s not strange to grasp onto any tiny shred of hope.

Im not part of the nutty “army”, it was very sadly obvious that there were no options left. And I don’t think the NHS should have funded any extreme treatments nor should she have attempted to fly to Canada. I just think the capacity judgement was unfair based on the reasons they gave and it’s a shame that it’s one of the last things that happened to ST.

Additionally there are many posts on this thread about how as soon as she received a terminal diaoagnosis, she should have accepted an imminent death. And that is was selfish and horrible of her to want to live or to fight to live and that she should have died before experiedcing any pain or suffering and that it is best for a family to accept and assist their family memmber in dying as quickly as possible after a diagnosis as it isn't fair for the family to see her suffer either. Many had a great deal of disgust and anger that she lived into 2023 at all as they think that was very wrong and that she was a horrhble young person and her family even worse for not ensuring her death came quickly after her diagnosis.

I don't know what it is you've been reading, @saffronsoup, but it's not this thread. These claims just aren't borne out by the evidence available to all of us.

While I think the media are selling lies (possibly on her parents' behalf), I fully agree with this and believe the judgment would likely have been overturned had she lived long enough to contest it in a higher court.

But she was delusional, as sadly were her family, about the possibilities that they thought getting treatment abroad offered her. Her mother truly believed it offered an actual cure. Sudiksha believed she would have a 50% chance of being able to breathe independently after it. Her family still believe , and even now are still saying, that the unfunded and actually non existent programme in Canada would have extended her life - had Sudiksha been able to travel to the non existent programme six months ago.

The palliative care, as explained by others above, was not proposed in order to withdraw treatment to hasten her death but to give her as peaceful and pain free death as possible. The sad thing is that the “last thing” that happened to her poor body was a heart attack, which could have been both painful and frightening for her ,and distressing for her family to watch.

This is why I don’t think an army would have gained traction. She would have looked so severely unwell/disabled - not just like she was sleeping and could have woken at any time - that she wouldn’t have won over “hearts and minds” in the same way as the other cases.

Yes, I’m not here to argue about palliative care or the rights and wrongs of that. Sadly I lost my dad to cancer so I’ve seen end of life care up close and personal.

My sole point is about the ruling on her capacity. Sorry, this thread has been going on a while so I can’t remember if you’ve said before, but did you read the court transcripts? Someone posted a link earlier in the thread. The judge explicitly says that she’s not delusional. And he also points out that according to case law, making poor decisions isn’t grounds to judge someone to not have capacity.

Grief and fear can really skew your perception but the point is, as the patient it’s your call to make. And case law supports that. Making terrible decisions isn’t sufficient grounds to be judged as lacking capacity. Case law is very clear on this point.

She wasn’t delusional, she just refused to entertain the idea of dying. That’s not the same thing. It’s a coping mechanism and one that is very common. In normal circumstances we don’t describe these people as delusional - we use phrases like “they carried on fighting right up to their death”. For some reason, and I can’t quite fathom why, in this case the very normal response has been used to find her as lacking capacity.

She does actually sort of acknowledge the concept of dying as she said to the Psych that she “wanted to die trying to live” - that’s a tacit acknowledgment of her situation.

I agree her hopes for treatment in Canada were wildly unrealistic and I’m not advocating that was ever a possibility. I just really do feel that being unable to stare death boldly in the face doesn’t mean you lack capacity. It makes you desperate and scared.

If she had survived longer, the next hearings would have been about suitable ongoing treatment and that’s a different matter altogether. It’s just the subject of capacity that I think they got very wrong.

Oh I have seen palliative care multiple times. Recently with the family friends whose 19 year old died of cancer. Thankfully that was in a health care system that valued him and and his family as members of the health care team, talked to him about decisions, didn't muzzle his family, didn't get upset that he wanted to still try treatments even if they had a low risk of success, didn't have a just STFU and die mentality that many on here have. The health care system he was in supported him and gave him autonomy and included him in decision making, they recognized his will to live and didn't see that as a bad thing that needed to be squashed as quickly as posible. They didn't try to silence the family and tell them to do what the doctors said or else. I am very grateful that the palliative care team they had saw death and dying as a collaborative process and they worked with the family rather than against them. They didn't harbour any of the disdain or disgust that is on this thread about him not dying immediately after diagnosis. They understood his desire to live as long as he could. He lived another 7 months and while many on here think he and his family were selfish and terrible to have allowed him to do that, thankfully he was in a health care system that supported that. For him and his family he got the death he wanted with support from the team - and while that angers many on this thread, to me that is palliative care.

In her own words; "“My doctors are saying because they cannot treat my MDS, I should not be having any more life-preserving treatment. Instead, I should be filled up with opioids so I will lose consciousness and die. I do not want this and want to try the treatment being offered abroad. It might be a small chance, but it is my only chance.”

That is her view as the patient of the approach of the team. That is the palliative care offered to her.

Anyone saying there was no discussion of withdrawing treatment or hastening her death hasn't read the filing. Although not the focus of the decision, it is discussed in the filing by many and it is clear that those discussions about withdrawing treatment were happening with her as early as February.

Nobody here is saying “STFU and die”. You
must be reading a different thread.

The patient didn't die immediately after diagnosis though, she was kept alive for about a year. A whole year where she was ventilated and tube fed and had dialysis , maybe not straight after diagnosis , but at various points through her stay. The fact is that mitochondrial disease has no cure, the type varies , some live longer than others, but there is no cure. Maybe one day there will be, but in the meantime there will be more deaths.
Think about this rationally, once upon a time T1 diabetes was a death sentence. Until insulin could be injected no one lived more than about a year after diagnosis, and only then by near starvation. Now we have all sorts of tech that accurately checks glucose levels and pumps to deliver insulin. Maybe, one day, mitochondrial disease will be managed/cured but not yet. The whole situation is sad, and no one wanted her to die.

ST was diagnosed 5 years ago, and it’s mentioned in the court documents that she was aware of the Charlie Gard case. I wonder at what point her family started seeking treatment in Canada/the US? I can’t imagine that it was only when she was first hospitalised a year ago?

That is fundamentally incorrect.
The notion of "filling her up with morphine till she died" was ST's misguided, wrong interpretation of palliative care.
She never actually talked with her doctors about it, because she had a skewed idea of what it was.

She never actually found out what palliative care was going to be offered to her. Essentially, she put her fingers in her ears and sang "la la la la la" whenever palliative care was mentioned.

I am very grateful that the palliative care team they had saw death and dying as a collaborative process and they worked with the family rather than against them. They didn't harbour any of the disdain or disgust that is on this thread about him not dying immediately after diagnosis. They understood his desire to live as long as he could. He lived another 7 months and while many on here think he and his family were selfish and terrible to have allowed him to do that, thankfully he was in a health care system that supported that. For him and his family he got the death he wanted with support from the team - and while that angers many on this thread, to me that is palliative care.

Where on earth do you get the idea that this would anger anyone on this thread? If anything, the general view is that that is exactly the sort of thing that should have happened for ST. However, it couldn't, because she wouldn't consent, due to the fact that she couldn't countenance the possibility that the treatment she wanted would realistically never be available to her and wouldn't help her if it was.

Honestly, you seem to have an incredibly weird perception of what people on this thread are saying. You just don't seem to be reading what has actually been written.

Being constantly on a ventilator and on renal dialysis is pretty brutal and inevitably leads to deterioration of the patients' organs. Emergency resuscitation is even more brutal, tends to lead to broken ribs and also tends to leave the patient with further long term damage including brain damage. If ST had survived her last heart attack she may well have been severely further impaired and even in a vegetative state.

It's not difficult to understand why doctors would want to discuss options to avoid that with a patient who has already severely deteriorated as a result of an incurable condition. None of that means they propose to pump her with drugs and hasten her death.