Archie Battersbee thread 5

[henryhihat]

New thread...

So we shouldn't treat those who are declared dead or are medically dead with respect because they won't know about it?

I am the one in the camp who dislikes this "Doctors know best and they know everything! Infallible science!"

Myself and my family have been on receiving end of lazy but dangerous NHS blunders on more than one occasion, all due to hasty judgement calls of overworked staff. So it's fine to be wary of judgements. I'm not the most well-spoken (I mean in articulating, rather than angry ranty!) so sometimes I don't always get the best of engagement from the doctors and I can feel like I'm losing out on something, if not for my English husband who can engage with the doctors well. So in some way I can see why 'chavs' can take distrust of doctors to the toxic extremes.

But this case is obviously different - it's the most scrutinised medical case already.

I have DS who's Archie's age and really looks like him too (blonde mop, dark brows and long eyelashes) - so it does feel a bit close to home. I even wondered even if brain dead and hooked up on machines, can the body grow and develop? Is his hair still growing? Clinging to every sign of normalcy?

I hope the family can leave the doctors alone after this though.

He needs 1:1 or 2:1 nursing anyway. She can’t be alone with him anywhere, until treatment is withdrawn. They are PROVIDING the treatment! Those nurses aren’t just there for the look of thing. They’re highly trained, very skilled nurses making intricate, complex adjustments to all the medical systems that are keeping him alive, constantly. No hospice could provide that. He’s at the very limits of what anyone, anywhere can provide. If those nurses take their eye off one system for a moment, he’ll die. Every single tiny intervention is a critical decision between will doing this stop a deterioration in one system, or start one in another? It must be a pressure cooker.

There’s no possibility of moving him. They’re struggling to keep him stable as they turn him, he won’t survive being moved off the bed, I imagine. Poor, poor boy.

I expect they will prevent Hollie trying to resuscitate. They have to - there is a court order. What a mess. And she can’t just ‘give him oxygen’ anymore than she can randomly inject him with something.

I think we are very close to a withdrawal now. The court has already ordered withdrawal of treatment and (I think) that he cannot be moved. Hollie herself has stated moving him is an unacceptable risk. It has been upheld in a number of appeals. I think it’s completely defensible to wait no longer, once the court has specifically stated he can’t be moved to a hospice.

It’s a huge testament to the calm professionalism of the medical teams that Hollie can maintain this impression of how easy it is to care for him and not realise how desperately unwell he is. It must be a constant web of critical decisions and unbelievably stressful.

I’m going to send a card. If I possibly could I’d send an enormous bunch of flowers and a chocolate hamper. I know it’s only ‘clapping’ but maybe knowing there’s public support for them will help some of those staff stay on and keep caring for sick children instead of burning out and giving up (for which I would not blame them one bit) and balance some of the ignorant vitriol coming from the likes of AA and the CLC.

I'm so sorry about your boy

The hearing is at 3.30 this afternoon

I actually think, at this point, the hospital are acting in the relatives best interests. It has already been established what are Archie’s best interests. In continuing treatment whilst allowing Hollie to endlessly appeal to courts they are trying their best to facilitate a ‘good death’ for both. I‘m sure they hope that if she exhausts all legal avenues she can eventually find some peace with the devastating loss of her child. I believe achieving a ‘good death’ should incorporate the patient and their family as the families are the ones who will live with it.

Wether Hollie will ever reach peace with losing her son is neither here nor there. But the trust is doing everything they can to help, wether she ever recognises it or not.

Hi all

This is a desperately sad case and an incredibly difficult position for a mother to be in. We are, at our very core, a parenting site that provides support.

We have already removed a large amount of posts that are not in the spirit of the site. We will remove this thread if we continue having to delete posts - so please bear this in mind going forward.

the uncomfortableness of the truth shouldn't be used as a reason to shut down discussion

I sometimes think we could do with that posted at the top of so many threads, no matter what the subject

Rightly or wrongly though HQ often think differently, and even where posts break no obvious guidelines we get entire thread deletions with woolly phrases like "not in the spirit"

All that said it's their site to do as they wish with, any anyone who can't accept this isn't forced to use it

Because it would be even more distressing for his parents if he were to pass away in the ambulance surrounded by paramedics and not his extended family. Once treatment is withdrawn from someone who's brain dead the body deteriorates very quickly and moving him could have a similar impact. At least in the hospital they could all be there with him.

I get that their feelings towards the hospital mean it's the last place they want him to die now, but hopefully someone will make them see sense. I also think consideration should be given to the hospice. Chances are its location will be leaked and the media circus would be awful for those end-of-life patients and their families already there.

but surely those hospitals and hospices would speak to Archie's medical team before making a decision? They wouldn't just take the mothers word for it.

I used to work in a hospice and referrals always came via another health professional, Eg GP or Dr in an acute hospital. People couldn't just ring up and ask that their loved one be admitted.

I’ve not read all of the threads but I have tried to catch up with the recent ones.

That poor boy, it’s absolutely awful. I was watching sky news this morning and they had a young man on who was diagnosed brain stem dead but went on to recover … there is no wonder the mum is holding on with stories like that.

I know it’s probably already been answered but have they actually officially declared him brain stem dead? If so, was it following a scan? Why havnt they done a recent scan to confirm further deterioration (or, however unlikely, improvement)? I feel for all involved, it’s a heartbreaking situation.

The hearing is at 3.30 this afternoon

Good grief, they're getting quicker

Not that it will make any difference, if Quia was correct that CLC even mentioning another application is enough for legal issues to be considered outstanding ... all they have to do is call Barts to talk about their intended next step and once again nothing will be done to release poor Archie

Of course they’re done scans. They’re not bloody guessing!

Doctors do not have to take living wills into account
what you need is a lasting power of attorney.
if you are mentally incapacitated your nominated attorney or attorneys step in to make decisions on your behalf. You can leave them an expression of wishes outlying what you’d like to happen in terms of details, but the LPOA does expressly contain the details around do not resuscitate orders your attorneys can follow. You can put a lot of detail into your LPOA and make it legally binding for your attorneys to follow, but that can make things difficult. An expression of wishes you stat n your LPOA that they need to follow, means they can deviate if not practically possible

The mother comes across as someone who has very limited self-awareness, and little or no ability to reflect on things other than through the lens of her own emotional reaction. She also seems like someone whose default setting is confrontational, and hostile to authority, even when it is clear to anyone that 'the system' is not the problem in this situation.

People like this will always exist - I have come across a fair few in my career, and I assume any teacher or medic or anyone in a public-facing job will be familiar with this kind of individual.

But she is being facilitated (and failed) by the actions of third parties who are feeding off and fuelling her confrontational approach. Specifically the Christian Legal Centre need looking at and, if necessary, dealing with by legal means to rein them in. The mainstream media's role in this circus also needs review, as there is some very shoddy and misleadingly emotive 'clickbait' reporting which is deeply unhelpful all round, and damaging to the family and the professionals involved.

I doubt that that young man was officially diagnosed as brain stem dead, more likely he was brain injured or part of his brain was dead, or a Dr has said we believe he may be brain stem dead before they had tested.

They have done more scans, according to the hospital trust's latest court submission. The docs stipulated his brain is 'coning', which means the stem has collapsed downwards into the spinal column. This is why those doctors in Turkey and wherever who have supposedly told the family they can help him should hang their heads in shame – you cannot reverse something as catastrophic as that.

Does anyone know anything about the UN appeal? Will they still look at the case even though the UK courts ruled not to postpone treatment while they assessed it? I don't remember seeing their judgement

That is not what I said or implied. I stated a fact - that he would be unaware of any attempt to move him. I did not discuss 'dignity in death' which is complex. If a body has no consciousness then the concept of 'dignity' can only be applied by those who are alive.

From what I have read so far, the poor child 's dignity has been repeatedly compromised by posting a public image of him wearing a nappy.

From I formation given publicly from court documents (making sure I say this as it's getting ridiculous now with deletions)

The hospital he is in now he was transferred to for surgery.

Evidence of his state of health meant they felt this a no go.

The hospital wanted to complete the tests required to diagnose brain stem death.

The family refused.

This is what started the court cases.

They were given permission to carry out the tests.

By this point he had no peripheral nerve response and therefore couldn't have the tests carried out under policy and guidelines.

One judge ruled he was brain stem dead based on other tests (MRIs). They said he was dead from the date of those tests in May.

This was overturned on appeal because they hadn't carried out the official tests used to determine and diagnose this.

So the case became based on Archie's best interests.

It's been accepted by all medical and law professionals involved that the MRI tests show his brain doesn't function and is 'coning'. It's accepted that it cannot recover from its current state and that the medications being given are to replicate the job the brain would do.

However he isn't legally clinically brain dead.

It would appear from what Ms Dance says that she believes because he legally cannot be declared brain stem dead he is therefore still alive and can recover.

And this is the point of debate and discussion currently being had here and nationally.

It's what we've all said needs tightening up in law to prevent further incidents of this.

It's a very emotive and complicated case.

This case reminds me so much of the Jahi McMath case in the states a few years ago. I can't bear to imagine the pain Holly is going through and I am 100% an advocate for patient and family choices as a former HCP, but there are limits and this (and the Jahi case) are well beyond them.

There was some discussion, on Sky News earlier, about Alfie Evans parents trying to resuscitate him with mouth to mouth after his oxygen was removed.
Hollie seemed to be saying she would do that.

This link is really helpful in understanding the medical facts.

It goes hand in hand with people not simply dying of old age anymore in the press…people reported of dying from x y or z. I know the medical certificate will state this as is needed, but there is no need to report an 88 year old dying of a heart attack as if it was abnormal. Both my in laws died in late 80s of pancreatic cancer, so many people were shocked and “why didn’t they get treatment”…they were in late 80s and we all die of something eventually and pancreatic cancer risk increases massively with age - it was statistically not unusual they’d die of it.
as with the scary statistic bandied around of one in two of us will get cancer- yep, because we diagnose cancer more in elderly patients, we have found cures or treatments for the previously big killers with early intervention like tuberculosis, flu, infections (in only the last 70 years remember ) and now heart attacks and stroke death rates are reducing.

Plus that scary statistic fails to point out that someone like me has been diagnosed with cancer 3 times- all picked up incredibly early. None worth fretting about. Operated on. No further treatment needed.

I have worked in medical science all my working life. I’m all for pushing boundaries of medical science. But somewhere along the way some people have forgotten medical science can’t beat death.

Maybe this is another reason why he should not be moved or she is left alone with him