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

@Mysleepisbroken Emotive or more, to the woman involved, the deliberate decision to cease treatment that is succeeding at keeping her alive, is a decision to kill her.

The treatment is not 'keeping her alive' it is merely slowing her death.

They don't need to turn the ventilator off, her lungs are damaged and will continue to sustain damage from her disease and from the ventilator, eventually there will be no oxygen getting to her brain and blood stream.

Palliative care is about having a conversation NOW about what happens in the future. At what point do you want which treatment withdrawn and what pain relief do you want.

I think you've got it a bit wrong. The Trust want to move to palliative care, and as part of this plan they would stip dialysis.

This first court application was to decide if she had capacity with the Trust seeking a declaration that sure did not have capacity and that the court of protection would decide on treatment for ST.

As the Trust succeeded in this first application, there will be a hearing soon at the Court of Protection where the Trust well argue that they plan to cease dialysis and move ST onto palliative care against her will, is in the best interests of ST.

Its a two stage process.

This case isn't just about the viability of Canada, but about whether or not the Trust should stop dialysis.

I personally do not think Canada is viable, but that it is upto ST to decide if her current quality of life is worth living, and whether she wants to move to palliative care.

Exactly this. It is giving her the autonomy to make her wishes known for the sadly inevitable situation she is facing. For example she has already said that she does not want morphine based pain relief, so other pain relief drugs will be discussed and then administered when she needs them. It is about asking her now how she wants her end of life medical needs to be met eg does she want painful and aggressive cpr in the event of cardiac arrest - she is in an ITU ward, she will sadly have seen this happen to others. Another discussion could be that at some point her dialysis treatment will be insufficient to cope with her kidney failure, by which time she will be very ill and probably unresponsive, to continue the dialysis would be invasive and frankly pointless and will just be one more machine coming between her and her parents in her last few days or hours of life. And very importantly, where does she want her end of life to happen, in a busy, noisy ICU ward, or quietly and peacefully in a side room with her family, and minimal intervention.

These are the realities of her situation that need to be discussed and agreed with ST and her family and her medical team, instead they are focussing on something which will not happen. People who are encouraging ST and her family to waste the precious time they have left in pursuing impossibilities are irresponsible and cruel.

And yet again a very misleading photograph illustrating the petition. Christian
concern appears very light handed and economical with the truth when it comes to truthful depictions of very difficult situation.s

Given she's able to express her wishes, why shouldn't that process be 'slowed down' if that's what she wants?

How is this any different from a terminal cancer patient taking chemo that will give them an extra few weeks?

The judgement says that she has had conversations about the 'end', about pain relief, and how she would like her mother to be there and she doesn't want drugs to induce unconsciousness. The plan the Trust wants to impose involves ceasing dialysis (which seems to be working fine at the moment) and possibly giving her sedation, both of which she had said she doesn't want to happen.

If her lungs are failing even on the ventilator, and even with the current regime, she's unlikely to last a month or so, why upset her and hasten that death (or stop slowing it which is how you deem it I think). Death is imminent anyway. Her death so likely picture before the court care is concluded.

The aim of palliative care is to give a good death. How is having your last days fighting a court battle over whether dialysis is removed, going to be a good death?

There are four viable options as I see it:

1. without these court proceedings, ST dies within the next month or so, still being ventilated, still recieving dialysis until very near the end. She dies still clinging onto a hope and knowing that the drs did everything they could to save her. Her passing may be more painful and drawn out than it could have been, but is in line with her wishes. She survives for the maximum time the current regime allows, a life that she feels is worth living.

2. ST survives long enough for court proceedings to end and the court either decides ST has capacity or the COP do not OK the trust's plan. ST dies in a similar way to (1) above but the relationship of trust will have been destroyed between ST and her dr's which will be a further stress in her final days.

3. ST survives long enough for court proceedings to end and the court approves the Trust's plan. ST dies sooner than she would in (1) and (2). Whilst her passing may feel more peaceful, it would involve treatment being withdrawn against her will. She would die feeling that her chance had been taken from her and that the hospital were killing her.

4. ST dies whilst proceedings are ongoing. This is the most likely outcome. It would mean huge amounts of stress for ST and as with (2) her last days would be in an environment where the relationship of trust has gone.

Note, I do not class Canada as a viable option. That's not too say I don't think she should be 'allowed' to go, it's simply not an available option.

I'm not sure why the Trust is incurring huge legal fees, which they know will take months, to hasten the death of someone they say will likely be dead within a few weeks. If their timescales are accurate, the legal action will never complete. If they are innacurate then that proves her point that maybe they are wrong about how imminent her death is.

Another discussion could be that at some point her dialysis treatment will be insufficient to cope with her kidney failure, by which time she will be very ill and probably unresponsive, to continue the dialysis would be invasive and frankly pointless

No @viques the Trust's plan is to stop dialysis now, not when it becomes insufficient.
There is also nothing in the judgement to indicate that dialysis isn't effective at present.

I absolutely agree those discussions need to be had and it sounds like they have been.

Yes there is a distinction legally and in reality between ceasing life sustaining statement and killing someone but it's often pretty subtle, and it's something we need to be careful with as a society

Very much agree with the need to be careful around this issue, but then that's precisely what's happening with the discussions within the Court of Protection - after all it's not as if the hospital are saying "Right that's it - we're switching off support no matter what you say"

Christian Concern appears very light handed and economical with the truth when it comes to truthful depictions of very difficult situations

Yes, @Viques, I've just been looking into them and it seems they can't even be straight as to what their own alleged "success" has been
Quote from a Q&A session with their head, Andrea Williams, published on premierchristianity.com:

What has been Christian Concern’s biggest success in the courts?
What is the greatest marvel? What is the greatest achievement? It is that we exist!

There’s not a particular case you’d pick out?

It is that we keep pressing on. That no matter what is thrown at us, what I can really say in all of this is that we sought to speak the truth of the Lord Jesus Christ

But you wouldn’t pick out a particular example?
No, because actually losing is winning, if you see what I mean, because actually what matters is to contend for the gospel where it is under attack, and to seek to witness the truth, and we must do that bravely, but we must do that wisely

Well put.
You make some important points, which many people on this thread are failing to grasp.

The "ST Army" which will certainly emerge soon also needs to try to grasp all of this.

I do not think they will, though.

Sigh. @BonjourCrisette is incorrect when she says:

"I don't know why people keep talking about stopping treatment. As far as I can see there is no suggestion of not allowing her to continue to receive the treatment that she is having."

And

"There has been no suggestion that dialysis or ventilation will be withdrawn at this stage."

The judgement states:

Para 2

"The Trust’s intention is to move to a treatment plan of palliative care. That path would involve a much less invasive regime for ST. Dialysis would end and there would be no further attempts to resuscitate her in the event of a further major respiratory arrest such as occurred in March and July this year."

And Para 9

"Given the Trust’s current application for an endorsement of its latest care plan which includes withdrawal of active medical intervention and a transition to palliative care, the decision in relation to capacity needs to be taken now."

There is no mention about this being a future plan in the case of a decline. Its the current careplan which the hospital is asking the COP to endorse.

If anyone can find a part of the judgment which confirms that the careplan well only be imposed when ST deteriorates, then please direct me to this. I can't find it.

Oh what a surprise that they've left out the key details. Shameful.

This is a desperately sad case. I fully supported the position of the hospitals in the cases of Charlie Gard, Alfie Evans and Archie Battersbee, but this is clearly a very different situation as the patient is able to make her own wishes clear. While travelling to Canada is clearly a pipe dream, I do feel that withdrawing treatment against her wishes is problematic. Poor Charlie, Alfie and Archie were effectively already dead; this girl is alive and conscious. On the other hand the hospital are just trying to ensure she has a ‘good’ death rather than a traumatic one, but she’s 19 - of course she doesn’t want to face the fact that she’s dying.

Very sad all round.

@Mysleepisbroken

From the judgement - the current case is not about whether the palliative care olan should go ahead, it is whether she has capacity to consider the plan

It is important to emphasise at this point that my judgment at the conclusion of this hearing is limited in terms of its scope. At the last hearing before Peel J on 26 July 2023, it was agreed by all parties that the issue of ST’s capacity to litigate and to consent to medical treatment, including the palliative care plan dated 20 July 2023, should be determined as a preliminary issue. I am not asked to determine whether the treatment set out in the palliative care plan is in ST’s best interests

Brave 19-year-old woman locked in legal fight with doctors has died
mol.im/a/12519801

Oh wow, how sad. Hope her family find peace and resolution. The loss of a child is so hard.

Apparently ST had a heart attack, I hope for her sake that they did not subject her worn out body to resuscitation, which can be brutal and distressing for family to witness.

So sad...

I dont see what naming her now will change..hopefully the family can find peace surrounded by the right people and not those with their own agenda

Hopefully, if they do have such a strong faith, they'll find comfort in the belief that Somebody has made the choice for them.

ETA: No, sadly not. Maybe they'll realise in time that this is exactly why she couldn't be moved. But the mention of wanting money for funeral costs seems a bit, um...mercenary?

I'm glad she's at peace.

Hopefully research will progress and a cure will one day be found for devastating diseases like this and SMA, which claimed the life of my friend's four month old and left her permanently broken.

It's devastating. She sounded such a bright, articulate young woman. And if being in denial about her impending death helped her to cope, I'd be the last person to question this, or even necessarily to try to persuade her otherwise. I'm not at all sure what there is to be gained by trying to convince her to face reality, especially when that reality is so cold, brutal and heartless.

My heart goes out to her family.

I hope her family sat with her at the end and weren't kept away by doctors trying to save her. RIP ST

I don't think anyone was insisting on making her face reality. They just wanted her to die peacefully and not in pain and distress.

Her poor parents must be devastated. I'm really sorry to see the Christian Legal Centre are now using her death as a chance to fundraise.

It's also a real pity that they are talking about the hospital making their lives miserable over the last year, when the reality is that, against the odds, they have kept her alive despite a number of times when she came very close to dying.

I think the clue was in the words "move to".... But as none of us have seen the plan, it's pointless speculating.

I see the Christian Legal Centre has now jumped on to a convenient bandwagon following the sad death of this young woman.
That newspaper account is full of inaccuracies.

I hope she’s at peace now and her family will be given space to grieve.