Archie Battersbee - Thread 4

[BreadInCaptivity]

Previous thread:

Archie Battersbee - Thread 3 http://www.mumsnet.com/Talk/inthee_news/4601962-archie-battersbee-thread-3

Nearly 3 years my lovely brother suffered a catastrophic rupture of his diaphragm which should have been dealt with via emergency surgery. He was treated very quickly however he contracted sepsis and one by one his organs shut down. As a family we couldn't fathom what we were dealing with. I remember getting a call saying that I needed to go to the hospital immediately as he was critically ill. We'd sat and had a cuppa few days earlier. It wasn't possible. However, he ended up in ICU on life support and it was very very obvious that he wasn't going to recover. My SIL absolutely made the right call with the withdrawal of treatment. They'd been married only five short years. They had a 6 year old daughter. My brother was strong and fit and young. At no point ever did we think that the advice to withdraw treatment was wrong. He wasn't going to wake up. He wasn't going to recover. Of course he could have stayed on support for a long time in the hope of a miracle but it wasn't going to happen. So many other families on that ward in the same position. We had 3 days before the decision was made. That was 3 days too long. I'm a parent, I have a child slightly younger than Archie and last night we had a conversation (along with my adult child) and that was an agreement that none of us would do what has happened to Archie to eachother.

It is an absolutely horrific position to be in but I think that Hollie Dance can't deal with the fact her child didn't want to be here anymore. He's never coming back and believe me, when somebody is in that position, you KNOW they're not coming back. I can't imagine ever prolonging my brother's death. None of us can. He was quite clearly "gone". There wasn't a hint of hope. His medical team were bloody fantastic and sat with me while I showed them pictures of the handsome man living life, not the ghost being kept alive. I will always be grateful to them. I will also always be grateful that they were absolutely frank about everything and we had no reason to doubt as we could see for ourselves. It was the most horrific experience of my life but every decision was the right one and in the best interests of my lovely bro.

I really hope that this little boy retains some dignity going forward. It's time. He needs to be laid to rest. I hope that his parents get the mental health support they so desperately need. I also think that by the grace of God go I that I'm not dealing with that. My adult brother was more than enough for a lifetime. Such a horrific and tragic situation.

"Our intensive care doctors and nurses will continue to care for Archie while there are outstanding legal issues to be resolved"

IMO this is utterly ridiculous because surely all "outstanding" legal issues were resolved when the ECHR refused to intervene

Since they haven't happened yet, for me suggestions that any future legal actions count as outstanding defy logic - unless they believe anything anyone might possibly do in the future to be outstanding, in which case Archie's mandated best interests may never be the focus

I'm the first to accept that some of this may be down to my lack of legal expertise, but right now I find myself wondering what Barts are playing at, and why the withdrawal didn't just take place tonight

i think the hpsital are being very kind to wait again-poor achie doesnt deserve all this

If the parents have a right to officially challenge the decision it's noone else's business.

I agree that the family have the right to legal redress and it's appropriate they do so.

I disagree that it is no-one else's business on the basis that in many of these cases (including this one) the family are being funded by an organisation that is using these cases to try and set legal precedents that would have a profound impact on wider human rights.

For example, a beating heart equals life. Consider the impact on abortion legislation, even at very early stages and even if the life of the mother was in danger. Or the ability of families to turn off life support when the patient had made their wishes clear this would be their choice because their heart was still beating despite being brain dead.

Or the impact on organ donation, because if a heart was beating, even if the patient was brain stem dead meant this could not be facilitated (and think how many lives would be lost in this scenario and the comfort organ donation brings to many bereaved families).

I understand why Hollie isn't thinking of the bigger picture here, but there is one and it's naive to suggest that discussion of these issues isn't in the public interest or appropriate.

im sure legally they can withdraw anytime but it wouldnt look great would it-she co9uld even use it for another case

Ref below:

"When parents make decisions that are not in the best interest of their child, the authorities and courts step in."

Original poster was talking about the courts too. This is what I responded to. No-one is stepping in to help really, certainly not effectively its a mess.
In my experience the family courts & NHS interventions aren't always sound or as helpful as you'd want or expect.
I always believed that authorities make decisions putting vulnerable people (including children) at the heart of the matter. But they don't always.
I think on this case something has clearly gone very wrong with the intervention.

If the parents have the right to make the appeals then this is their right. It's nothing to do with anyone else.

Yes, it is their right. But how can it be nothing to do with anyone else? It's to do with the doctors and nurses who have to give evidence, who have to go about their work knowing that the parents are looking for things to criticise, and who have to do the incredibly hard job of keeping someone with no brain function going. It's to do with the courts and the lawyers on both sides. It's to do with the other patients and families in PICU having to cope while al this is going on.

And it's to do with Archie. As a society, we have recognised that vulnerable patients need to be protected, if necessary by the courts, and that those patients' relatives don't necessarily make the best decisions for them. So, finally, it's to do with all of us. We all have an interest in seeing that that protection happens and is effective. People who, even with good intentions, don't act in their relatives' interests, need to know that their wishes don't automatically come first. Because it might be any of us lying in an ICU bed tomorrow with catastrophic brain damage. And I for one would like to know that, if that happens, the system will look after my interests, and I will be allowed to slip away peacefully if there is no chance of recovery.

Important point. Thank you.

A big risk with hospice transfer is that, once there, the agreed plan might not be adhered to. And that would be horrible for everyone, including the other patients and their families, some of whom may also be in their final hours.

I would assume that they are talking about "outstanding legal issues" advisedly, i.e. that CLC or the solicitors had already been in touch with them about legal actions concerning the move to a hospice or another country. Once a potential legal claim has been raised formally, it's an outstanding legal issue.

So what do you say has gone wrong? There was never going to be a happy ending, because this all stems from the awful tragedy of whatever put Archie in hospital. What different decisions do you say the authorities should have made? Which of the decisions made did not put Archie at the heart of the matter?

im sure legally they can withdraw anytime but it wouldnt look great would it-she could even use it for another case

Nothing is ever going to look "great" in such a sad case, but at least - as the courts have repeatedly said - withdrawal would be the best thing for Archie, who let's not forget is supposed to be the priority here

I'm no longer sure if Barts are now doing this to "be kind" or not, but it's hardly kind to Archie and I'm not even convinced it's kind to his mum, who's being bounced from hope to despair and all over a situation where there's no hope at all

And yes, no doubt she could try to isssue another case after Archie's gone, but since Barts appear to have full legal authority to withdraw support I can't imagine it would get her anywhere - just like all the other cases that have been brought

If she had an ounce of intelligence behind her words I'd feel a bit hurt to hear someone say dying in hospice is a "dignified end" over the hospital. My dad died slowly over 20 hours after his ventilator was turned off and it was as dignified as it could have been. It wouldn't have been any more dignified just being in a different building or room. He was semi vegetative and I pray he knew nothing of where he was or what was happening (sometimes I pray he was able to hear that I was there with him in the hospital at some point depending on where my head is at).

I thought the whole point of a hospice was that it was a more relaxed place for the person dying and equally there was nothing more medically to be done.

In my dad's case he was semi vegetative and medically he was dependant on the ventilator and heart meds. Archie has no brain function what so ever and is so medically dependant he will die in minutes, not hours, without. Of what benefit to Archie is it if he is in a different room, he has zero awareness!?

All Ms Dance cares about is not giving up and nor letting the trust win. This has no benefit to Archie.

Can the courts order that the withdrawal of life support be carried out by a certain date? And can they do so unprompted e.g. if Bart's don't comply can they follow up (or would that be a breach for the police to investigate [if someone complains?] )

Or can Bart's apply for a deadline?

I'm just trying to think what's to stop endless new ideas warranting new appeals.

"find myself wondering what Barts are playing at, and why the withdrawal didn't just take place tonight"

I guess they might want to let his mother run herself to a complete standstill legally rather thsn risk being accused and sued for cutting off a theoretical legal escape route by switching the machines off first. Since Archie doesn't have the capacity to suffer any more it's not cruel to him to do this, albeit it's pretty hard on the staff trying not to let him arrest every time he's turned over and of course undignified not to allow his body to just get on and die.

What I don't get is, all the people on AA and the family with the 'Archie is still in there, come on open your eyes Archie take a breath' and if Hollie genuinely believes he's breathing over the ventilator - wouldn't she want a team of doctors there in case he does breathe when ventilation is removed? Instead she's fighting for Archie be moved to a hospice so acknowledging there is no hope whatsoever. You'd think the daft optimistic members of AA willing Archie on would realise that.

Surely even if he could be moved no hospice would risk taking him and the family turning up. They have other vulnerable people to consider without factoring in the possible risk of them kicking off.

as for the anonymity point, I don’t disagree. My only concern though is that his mother is already hugely distrustful of the medics and courts and “silencing” (as she would see it) her isn’t going to help

at least Archie the paramount consideration in all this has no idea all this is happening

**I would say you sound incredibly detached, this is a human parent, and I suspect she believes she's doing what she should for her son & family.

Unless you've experienced the same thing, which is doubtful, I'm not sure you can make this judgement call*

Of course I am detached from the issue as is anyone outside of the family.

You assume this is a bad thing. The courts are detached in an emotional capacity because they have a duty to consider what is best for Archie based on the evidence not on the feelings of the family.

As for my experiences, you assume a lot. I've watched 3 members of my family die. One at home following what was clearly a catastrophic stoke (when we had to inform paramedics they had a living will and did not wish to be resuscitated) and two in hospital, one of which where the decision had to be made to withdraw treatment.

None were children and the possibility of suicide was not a consideration.

So, a different situation yes. However, I'm not without some insight into the situation and I've repeatedly expressed how I am and remain sympathetic to the families plight (and support their right to take legal action) whilst not agreeing with their choices.

Regardless of whether Hollie believes she is doing "what she should" for her son the fact is the courts have (and quite rightly imho) judged that her wishes are not in his best interests.

So what happens now if the appeal to get him into a hospice is rejected? Does it just go to the high court, court of appeal, Supreme Court and the ECHR all over again? Meanwhile, he just languishes in ICU?

What an awful situation his family are in. It’s just tragic. I really do feel for them.

Surely even if he could be moved no hospice would risk taking him and the family turning up. They have other vulnerable people to consider without factoring in the possible risk of them kicking off

I agree with this, and a transfer would place the staff doing it in a vulnerable position.

Ive done a lot of transfers/retrievals and most of the time they go ok, everything he is on can continue in terms of drugs/ventilation.

There's a need to “over prepare” for them though, with extra iv access, intubation of someone who is a bit unstable and at risk of deteriorating on the way. This is because it’s very difficult to do anything in a helicopter or ambulance.

Realistically, if he deteriorated on the way, the ambulance may well need to pull over for staff to perform procedures to stabilise him and there is a risk everything ends on the side of the road.

At the moment, Hollie’s anger can be directed at the whole unit, if Archie’s heart stopped on the way it would be “Dr X and Nurse Y”. Who would put themselves in that situation?

i dont think they can resus him so if he goes in the ambulance then thats it

The hospital have been very clear he is not able to be moved safely:

"Further information
We understand the motivation behind the family’s request for Archie to be moved to a hospice.

However, Archie is in such an unstable condition that there is considerable risk attached even to turning him within the confines of the hospital bed, as must be done as part of his continuing care.

This means that in his condition, transfer by ambulance to a completely different setting would most likely hasten the premature deterioration the family wish to avoid, even with full intensive care equipment and staff on the journey. We have explained this to his family."

That’s true, but stabilising isn’t necessarily the same as resuscitating. If his tube became dislodged in the ambulance would intubation be classified as resuscitation or just continuation of care?

I can't see any court granting moving Archie- who would be responsible for him for the duration of transit when the trust have been so clear they're opposing it?
None of this is in his best interests, though I can see for his family their view is it's their decision to make.
Thank goodness the legal system is focused on Archie's interests first.