As a parent, how on earth do you make the choice to turn off life support? How do you accept that there is effectively no hope? And I wonder if the circumstances of his injury are a cause of even further grief in this case?

There is a right to life, but not a right to existence. We stop our animals suffering, but understandably struggle to do the same for our children. Which is why the law is there to make an impartial decision on the facts, not emotion.

My heart goes out to all concerned.

Indeed.

A parent should be the advocate of their child. You could say that about most scenarios, but especially so for an unconscious one with zero ability to defend themselves. They should question, challenge and seek second opinion. But the parent/child relationship is based on the parent having the knowledge and maturity to speak and think with clarity beyond the reach of youth. I would be heartbroken to think that any parent just rolled over at the first suggestion of the medical team that it was time to give up. It is their role to be the last in the room to lose all hope. The concern comes when this is taken too far. When the parent has no objectivity or trust in the experts wanting the best for their child or when third parties with other agendas weaponise the parent.

This poor kid is to all intents and purposes dead already. She says she wants him to have a natural death – I just don’t see how that is even a thing when his current ‘life’ is wholly unnatural. Everything now is about his legacy and the welfare of his relatives (and the medical professionals embroiled in this who need to be in a fit state to go again and keep on doing the right thing). Sadly these parents will end their days ruined by this experience. Life was always going to be worse after the death of their son – now it will have an extra lay of hate and distrust added on top. These religious groups need gutting.

She says she wants him to have a natural death – I just don’t see how that is even a thing when his current ‘life’ is wholly unnatural. 

One of the more incongruous arguments I’ve seen about this is that doctors ‘play god’ by turning off life support but one could equally well shift that allegation back to the point where life support begins.

For most of human history death was a fairly easy thing to determine but medical advances have blurred that.

Spin

One of the earlier judges nailed it in saying that the treatment is prolonging his death not his life.

This.

Spin

One of the earlier judges nailed it in saying that the treatment is prolonging his death not his life.

This, too. I was writing a comment in my head as I read through the thread, but can’t express my thoughts on it any better than that. Horrible situation all round and no happy ending. The group that’s funding these appeals needs to FRO though.

For anyone who’s interested in Shewmon’s ideas here are a couple of links I found.

https://www.researchgate.net/publication/235786470_D_Alan_Shewmon_and_the_PCBE%27s_White_Paper_on_Brain_Death_are_brain-dead_patients_dead

https://journals.sagepub.com/doi/full/10.1177/0883073811421986

Suffice to say , I wouldn’t 100% trust a medical “expert” ever.

@revs1972 sorry to hear the issues you had.

Yes question things said to you but how can you say not to trust a medical expert when  you trusted the midwife you trusted the consultant. Do you trust some or none or is your trust in Dr Google etc

No offence to GP’s but they are not experts, they are general practitioners who should refer you to the experts . Mrs b  is a midwife of 30yrs experience and its quite fair to say an “expert”  and is constantly annoyed at the advice given to women and their partners by non “experts”

These b*st*rds doing the legal work are causing immeasurable harm to them and his memory for them, should not be allowed.

I point the finger at the Christian Legal Centre, or whoever they are – they’re ones driving this to the ultimate, pointless, drawn-out conclusion.

the Archie Battersbee case is made worse by the constant press coverage, it is just playing with the families emotions to gain public following in a lot of instances.

Today programme on Radio 4 yesterday interviewed a former judge who has dealt with these types of cases in the past. He said that despite being heard in open courts, they rarely get publicity. The only time they have been very public is where the families want that publicity.

It is tragic for everyone but it is good that there are legal routes to challenge decisions and process is allowed to be played out with everyone tested to ensure it is the right decision in what appears to be a near impossible situation.

For anyone who’s interested in Shewmon’s ideas here are a couple of links I found.

Thanks. An interesting read, particularly the working party discussion. The main issue seems to be the declaring and definition of ‘death’ for an entire human organism, rather than whether the absence of brain activity is the absolute end-point. Certain automatic bodily functions eg wound healing can be maintained long after brain stem activity has ceased. Does that mean the organism is still technically alive?

It’s a valid discussion to have, and I can see how a family in this position might reach for it, but it only looks at the strict definition of death, rather than whether there is any prospect for the return of higher functions such as consciousness, let alone any meaningful quality of life.

I would be heartbroken to think that any parent just rolled over at the first suggestion of the medical team that it was time to give up.

Why? It’s not the first port of call for doctors, they will usually prolong life as a default not cut it short. Also absolutely depends on the circumstances, not just of the patient but of the parents, siblings etc. If a fit and active child is reduced to effectively a vegetative state is that fair on them? Certainly will massively impact the parents remaining life and it’s certainly not fair if siblings are involved.

The wife and I talked this over as a result of this case and I know it’s very different having a theoretical discussion as opposed to being in the situation but we are both adamant we would have gone with the doctors advice at a much earlier stage. This is all about the mother grandstanding and being given the opportunity to by a highly dubious religious organisation. She now wants him transferred to “die” in a hospice. During Covid many people couldn’t even see their dying relatives yet alone decide the time, manner and place of death.

As above these cases hit the press because the parents want them to, it’s not about the child.

I won’t go into some of the things I saw whilst at Southampton Neo Natal and Plymouth Neonatal whilst we were there with our prem baby as it brings up bad memories.

Suffice to say , I wouldn’t 100% trust a medical “expert” ever.

while I share some of this sentiment (>100 days on plymouth & bristol NICU with my son), it strikes me that this case is a bit more clear cut. my son was fortunate to come out the other side relatively unscathed, others weren’t. there were times we thought it would be different and there were times we challenged the consultants opinion.

I don’t think this is about Archie anymore. its about grieving parents being exploited for media coverage and political points.

It’s a horrible situation and not one I’m remotely qualified to comment on, but I would assume that the NHS, quite understandably, doesn’t really have the luxury (both in terms of finance and resources) of caring, possibly for decades, for what is effectively a dead body.

However, I have noticed that that they always qualify their case by saying that it’s in Archie’s (rather than their) best interest. I could be massively off the mark here, but I would assume that Archie, sadly, has no ‘best interest’ as, as others have said, he is already dead and well beyond the point of suffering.

I don’t know if this is a deliberate use of language to make the case seem ethical rather that practical or can someone who is brain stem dead still be deemed to have a ‘best interest’?

Suffice to say , I wouldn’t 100% trust a medical “expert” ever.

My memory’s shocking, but there was a UK case some years back where the NHS refused to release a child from its care so the parents could take him abroad for (what the NHS saw pointless) cancer treatment – I think it was some sort of proton therapy. The parents effective kidnapped him and fled abroad for the treatment; as I recall it seemed to be effective (although I’ve no idea of the long term story).

I noticed, and reflected on this, some years later when there was a national news story of the NHS rolling out proton therapy and how great it was. I appreciate though that this is a very different story.

The main issue seems to be the declaring and definition of ‘death’ for an entire human organism, rather than whether the absence of brain activity is the absolute end-point. Certain automatic bodily functions eg wound healing can be maintained long after brain stem activity has ceased. Does that mean the organism is still technically alive?

I would suggest that if the body cannot breathe independently it is effectively dead. Wound healing doesn’t require brain function as far as I know, breathing and heartbeat do.

Why? .

The two scenarios in my head when I typed it…..

Doctors – “We think this is the end of the road and the best thing to do it end things now”
Parent – “Ok then”

Or

Doctors. “We think this is the end of the road and the best thing to do it end things now”
Parent – “Are you sure about that? Are you absolutely sure there is nothing else we can do? There are no more experts that can be consulted? I can’t believe we have exhausted all possibilities. I need to hear that for another expert too”
Doctors – lots more assuring that this really is it.
Parent – ok then.

Of the two scenarios – the one that would make me sleep at night a little better was the second. I would and should need persuading and convincing using as much medical evidence as a layman is able to productively uee about such a massive decision, even if it is inevitable. And I think I am pretty normal in that feeling. I’m not talking about dragging things through the court like this sad case or being abusive or total denial.

What a horrific thing for all to have to go through, and particularly when as senseless as a dumb tiktok challenge. What idiot even dreams stuff like that up and should platforms shut it down at source?

I’m deeply sceptical of the claim it was caused by attempting the Blackout Challenge, which is holding your head between your legs then standing up quickly or similar, not hanging from a bannister via noose round your neck.

The poor lads brain has begun to die, effectively liquefy and drain down into his spine. There is no hope of recovery.

I urge anyone interested in the case to read the judgment
https://www.judiciary.uk/wp-content/uploads/2022/06/Archie-Batteresbee-judgment-2-1.pdf

I always forget how clearly worded judgements are. Definitely worth a look

I would suggest that if the body cannot breathe independently it is effectively dead.

Patients with survivable conditions currently receiving mechanical ventilation in ICUs up and down the country wouldn’t favour that definition. Does that criteria cover CPR in non-breathing patients? Even in situations where a rapid return to self-ventilation is unlikely, we will use machines to replicate that, even in the long-term, for example iron lungs for polio/paralysis patients.

https://en.wikipedia.org/wiki/June_Middleton#:~:text=June%20Margaret%20Middleton%20(4%20May,living%20in%20an%20iron%20lung.

It’s why people are interested in how you define the point of ‘death’ in a complex human organism, and whether that is solely a factor of brainstem activity.

I don’t think this is about Archie anymore. its about grieving parents being exploited for media coverage and political points.

The media battle isn’t about Archie.

AIUI, “in the child’s best interest” is the legal and medical term? What is why impartial judges are the final arbiters in these cases.

I’ve had the DNR/end treatment conversation with my parents and my wife. If (God forbid) there is no hope of the husk that was my child recovering in any way, I’d like to think I could think clearly enough that I cod make the same choices.

As they are both sensible teenagers, probably ab idea to discuss it some time either them

That judgement is a hard read, i cannot help but have huge sympathy for the parents and family. I can’t even comprehend how i might feel if my boy was in that situation.
Their lawyer appears to be a piece of shit though and making accusations against the care team is a low blow.
Just a horrible situation all round

Suffice to say , I wouldn’t 100% trust a medical “expert” ever.

i’ve just re-read my post above back. I’m under no illusion that without those medical experts, my son wouldn’t be alive today. That was 10yrs ago with very different levels of funding and staffing and then they were overworked. I hate to think whats its like now.

@Convert scenario 3, Doc says they recommend turning off life support, I ask please explain your workings, if what the doc says makes sense and child is clearly unresponsive (in this case for months) I’d probably* follow their advice. Key decision for me would what prospect is there of some quality of life both for the child and those around them, not grasping at straws with no thought for the long term.

*difficult to 100% having never been in this situation.

It is a tragic case and one that any parent hopes to avoid at all costs.

Unfortunately in this case the mother seems to be susceptible to manipulation by some groups with an agenda to push and their pet ‘experts’.

This has turned a tragic situation, partly, into an unedifying media circus and this is to her and her family’s detriment.

No two cases will be the same, but there was an interviewee on R4 this morning who was very dignified – by way of contrast. The Battersbee case seems to have been one of predetermined conflict with medical professionals from the off.

I always forget how clearly worded judgements are. Definitely worth a look

+1 reading that made me wonder how this has been allowed to go on for so long, poor lad & family

Patients with survivable conditions currently receiving mechanical ventilation in ICUs up and down the country wouldn’t favour that definition. Does that criteria cover CPR in non-breathing patients? Even in situations where a rapid return to self-ventilation is unlikely, we will use machines to replicate that, even in the long-term, for example iron lungs for polio/paralysis patients.

Are those patients in a similar situation to Archie, i.e. neurally unresponsive?

Well, no, I was just responding to what you wrote with a list of situations where the body is unable to breathe independently, but which are wholly or partly reversible over time with medical intervention. Obviously if the brain stem fails, then it follows that many vital autonomic functions fail with it.

The discussion point in the report I was talking about was questioning whether the persistence of certain autonomic functions beyond brain stem death – healing, growth etc – meant that ‘life’, however limited, persisted in the organism, and you could not say that person had already died. It’s a technical distinction though, and not an actual argument for keeping this lad in this state in perpetuity, even if that could be achieved, which it can’t.

Read the judgement completely and it is clear in law. Para 139 is notable:

Another criticism made of the Trust was that mediation should have taken place after it had been refused in April by the family. In his closing submissions Mr Quintavalle suggested, for the first time and much to the surprise of counsel for the Trust and the Guardian, that the family might agree to the withdrawal of all medication being administered to Archie but that without mediation the Trust had not been able to find this out. In the event it was too late for such mediation to take place.

Mr Quintavalle is the family’s barrister. He does not come across well in the judgement.

On a personal level, I’ve looked at similar MRI scans and then sat watching my sister subsequently expire after removal of intubation. It’s a dreadful situation but was not a hard decision.

I was under the impression this was a social media challenge, and part of my OP is whether the SM companies have responsibility to take them down if this can be the outcome. That was on the basis of what I’d read and re-reading now seems to be a ‘claim’ by the parents / mother.

Others on here have cast significant doubt on that assertion – on what basis?

The judgement linked above says that he was found hanging from the bannister and that it is assumed that it was an accident with a bathrobe waist tie.
I don’t want to read between the lines but it is hard to see an accident resulting in that outcome

Others on here have cast significant doubt on that assertion – on what basis?

The court ruling linked to above.

OK, hadn’t read that. Thanks

Others on here have cast significant doubt on that assertion – on what basis?

I suspect its because all the news reports say ‘he was believed by his mother to be engaging in a social media challenge’. The implication being that if she actually had hard evidence that he was, then she would have produced it by now.

That ruling is sobering.

OK, hadn’t read that. Thanks

As others have said, it’s well worth reading. Difficult and upsetting but interesting and very well written.

Spin

As others have said, it’s well worth reading. Difficult and upsetting but interesting and very well written.

Yes I have to say, as much as it often appeared the judge was dropping off to sleep whilst I was on jury duty, I was very very impressed at their ability to cut through the noise in the cases and distil it into an easily understandable summary explaining the important details clearly.
Restored my faith in the justice system a little bit and since then I’ve often looked for the judgment in big ‘media storm’ cases to find out what really happened. Often rather different from the impression you’d get from the press.

I’m deeply sceptical of the claim it was caused by attempting the Blackout Challenge, which is holding your head between your legs then standing up quickly or similar, not hanging from a bannister via noose round your neck.

If it was caused by the blackout challenge then it wouldn’t be the first time that this has happened unfortunately.

From the Guardian link:

In July 2021, her family began noticing bruising on Lalani’s neck, which she explained away as an accident. Unbeknown to them, she had begun participating in the blackout challenge, which had first showed up on her feed weeks before.

They definitely took it further than just trying to stand up quickly!

soundninjauk

If it was caused by the blackout challenge then it wouldn’t be the first time that this has happened unfortunately.

From the Guardian link:

In July 2021, her family began noticing bruising on Lalani’s neck, which she explained away as an accident. Unbeknown to them, she had begun participating in the blackout challenge, which had first showed up on her feed weeks before.

They definitely took it further than just trying to stand up quickly!

Well, that’s depressing.

I can only say that when I heard about the blackout challenge in the press I searched for it, and only found the type of stuff I mentioned. Holding breath, head between the legs etc. Nothing at all like hanging. It could have already been removed at that point though I suppose. It wasn’t blocked like it is now.

So it will be interesting to see the outcome of the cases you linked, and if the allegations are true I hope they get a bloody good kicking for it not just “pay some money and carry on”

Those links are horrible, like the last poster i thought it was something far less extreme than that

I know. I have a 3 year old daughter and I hope upon hope that all this ‘social media’ crap has gone past by the time she’s old enough to get involved.

Not optimistic though.

I suspect that the real truth is that this was nothing to do with social media whatsoever.

I would urge anyone commenting to have read of that judgement. The skill and care that the medical teams, the legal teams and the judge have put in to try and come to what appears to be the “kindest” outcome for the poor child and his family is huge, in such a short space of time.

My heart goes out to his poor family.