Archie Battersebee case-thread 2

[whynotwhatknot]

ongoing from previous thread

www.mumsnet.com/talk/am_i_being_unreasonable/4573803-archie-battersbee-case?page=40

UN Convention on the Rights of People with Disabilities, and under an Article of the UN Convention on the Rights of Children

This is what she is approaching the UN for , but as it has been said many times , Archie is not disabled so hopefully that appeal would be thrown out

The Rights of Children , otoh, he is a Child and does have Rights .
But are his Rights being violated here ?

Oh , and she's talking about getting a Rottwelier because (apparantly) Archie wanted one The bunny rabbit will be thrilled (not) .

I suspect the argument is that, as Archie hasn't been declared brain dead, by virtue of his present situation he meets the definition for disability . Therefore by not respecting his right to life the UK is in breach of the UN Convention on the Rights of Disabled Persons.

The convention defines persons with disabilities as including those with long term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with other. As Archie hasn't been declared brain dead, to be fair he does currently comply with that definition.

Tldr

Slight derail but I recently saw a USA bereaved mother complaining that the medical insurance company had charged an extra $3000 (approx) for additional time in ICU while her 12 year old daughter who had suffered a catastrophic brain injury was kept on a ventilator a bit longer prior to organ donation.

She had argued with the company and perhaps what grieved her most was that she had no sympathy from the company. Ringing complaints or whoever not a word of "so sorry for your loss". Just "that's the bill. Pay it". (I paraphrase, sorry I'll never find it again, it was in Twitter).

People in the uk have no idea how lucky we are.

This. As horrible as it sounds, the cost of keeping a dead body 'alive', not to mention the trauma to the doctors and nurses, is ridiculous. This should have been ended. He's dead and he is never coming back. She needs to accept it and the Facebook army needs to back down.

It appears Tafida is still in a vegetative state from everything I've read but Archie's brain is dead an decaying.

charged an extra $3000 (approx) for additional time in ICU while her 12 year old daughter who had suffered a catastrophic brain injury was kept on a ventilator a bit longer prior to organ donation

Argh now that seems quite inhumane to charge someone to keep their child in ICU while they wait to harvest the organs

I don't know if organ donation is paid in the USA (as blood donation is) but even if it is the money she'd get from the donation would be a drop in the ocean compared to what the hospitals would charge the receipiants .

I am very much NHS=Free At Point Of Use but I wonder if Ms Dance has an inkling how much time , expertise and money has been spent here ( putting aside the trauma and expense of relocating patients who could have otherwise used this bed) .

I don't mean to sound callous, but so what if she does call the hospital murderers most people understand there is nothing more the ,medical and nursing staff can do for Archie its only the "army " who believe her and most of them don't have the intelligence they were born with
Hollie is never going to accept this I hope the hospital are being supportive to the staff and putting in protective measures to keep them safe

Archie isn't anticoagulated. The arterial line is primed with and connected to a bag of heparinised saline, put under pressure, so that the blood doesn't flood the line.

Removing the line in end of life care serves no purpose. It can be done but it isn't necessary. The arterial line can be capped off and the bag/transducer removed if the nurses want to reduce the medical paraphernalia.

If the family did want the line removed, firm pressure for 10-15 minutes, then a pressure dressing is plenty and there needn't be any mess.

It appears Tafida is still in a vegetative state from everything I've read but Archie's brain is dead an decaying

Yes but its these sort of case histories that are giving her hope .
There were loads of posts early on (on SM) giving the most outlandish "Well this happened to XYZ , they'd practically wheeled him to the Morgue and he opened his eyes and jumped off the trolley"

I sadly feel there is a significant risk that there will be no dignified end to this tragedy.

I hope sincerely that it's not the case and that Hollie can be persuaded to let Archie go in a planned and peaceful way, but I have a horrible feeling that won't happen.

Archie deserves more than this and I cant help feeling this case stopped being about his welfare some time ago in respect of the family's legal challenges.

Its a very good point from posters commenting about the effect on the hospital staff looking after Archie and are measures in place to support them. It must be just awful for them as well, trying to do their job while treading on eggshells and facing hostility from the family.

Does anyone have knowledge of hospital protocol in situations like this. Will it be only senior and most experienced staff assigned to look after Archie. The pressure must be immense.

ICU staff are all highly trained in what they do even the newer nurses have had detailed additional training. Because of the case maybe some have asked not to look after him for example if they have had run ins with family. Some staff may volunteer to care for him on their shifts. Depends on how the unit is managed but I’m sure that’s all taken into consideration with patient allocation.

All trusts have well-being/occupational health support/debrief etc. More so since covid but it does vary from trust to trust. Support often comes from your immediate colleagues.

I don't mean to sound callous, but so what if she does call the hospital murderers most people understand there is nothing more the medical and nursing staff can do for Archie its only the "army " who believe her and most of them don't have the intelligence they were born with

Absolutely, x2boys - that's why I mentioned it would make no sense to say it, and such a horrible accusation won't stick anyway

It wouldn't be very pleasant for the medical staff, but frankly after a lot of what's been said already I doubt they'd even be surprised

Can’t they just switch off the life support and say he had a cardiac arrest?

Obviously they can’t and won’t, but they bloody well should be able to.

And the scrounges behind the fundraiser should be made to give that money to the NHS for all this farce is costing.

I've been wondering how much of this is to put off and obfuscate the inevitable investigations prior to the inquest.

Having a child in a vegetative state is nothing to aspire to.

Life at all costs is not something we should encourage.

I have an advance directive which states that if I end up in a vegetative state or beyond recovery then treatment is to be withdrawn. My family know my wishes, but this means that they don’t have to make the call.

The bbc article said they are still seeking assurances from the hospital that the life support won’t be withdrawn while they go to the UN. So it’s not a done deal that they will do so. If the hospital has any sense they’ll refuse and will remove the treatment with or without the parents present.

At this point I’m not even sure the parents should be present. Clearly they’ve actually lost sight of their child in all of this.

Can I (respectfully) ask what would happen in a parallel universe where everyone just said ‘ok’? Would he stay as he is potentially forever? Would he definitely have a cardiac arrest or is that wishful thinking from everyone involved? Could he or someone in a similar position theoretically still be there in fifty years?

This is simply a theoretical question, I’m not suggesting it should happen, I’m just interested that’s all.

I’m thinking unlimited money, IT beds, doctors, simply the wishes of the mother. No court, no ethics committee.

Let the poor little mite go. They are preventing him moving on 😢

"I have an advance directive which states that if I end up in a vegetative state or beyond recovery then treatment is to be withdrawn. My family know my wishes, but this means that they don’t have to make the call."

Same.

Even if he was kept on his medications to control everything and his ventilator to maintain his respiration, eventually his muscles would atrophy as there's no nerve stimulus to activate them . There's muscle in th arterial wall too which would atrophy .
Archie was physically fitter than most 12yo but even his hear muscle would deteriorate - not to mention the necrosis which is ongoing .

I think his body would quite quickly become necrotic and he’d die. Not a dr but thinking to that horrific case in Ireland a few years back where the opposite to this, the brain dead woman had to be artificially kept alive against her family’s wishes because she was pregnant

Wouldn't the 'best interests' judgement cover the issue of 'disability'? It took the stance that death wasn't proved, and therefore balanced the intrusive, undignified treatment against the possible benefits to Archie of that treatment, on the basis (agreed by the parents) that the only future would be death or severe disability