After the last goodbye.

[BongoJim]

I know the last thread was removed because there was too much speculation and I get that. I believe a lot of people shared a lot of personal stories and experiences which were important and gave powerful insights. Would we be able to continue the debate without the speculation (start your own topic for that) and instead just continue to debate where cases like this need to change going forward, how court processes can change as a result of such difficult cases and what lessons can be taken from this awful case without it being a thread about a thread? It would be a shame to lose being able to discuss every other aspect of an important debate just because one aspect of it is problematic for MN. Is it even possible to continue debating the wider implications thrown up by a case like this? If it's not then my all means MN please delete. 🥺

It is so sad that Archie's family have had to go through this. The thing that confuses me is that Tony Bland from the Hillsborough disaster was in a similar state for nearly 4 years before his family were able to stop treatment & allow him to die peacefully. They were also able to have him moved to a hospital near them. Why aren't families allowed to have doctors & specialists from other hospitals & abroad to examine their child & give an opinion on if there is a chance of any kind of recovery? It seems to me that hospitals in the UK are almost a closed shop. There should be an independent medical tribunal service for cases like this, not forcing parents to fight against hospitals & the courts. Archie's parents should have been able to move him to a hospice where he could pass away peacefully with his family around him, not in a hospital room with security guards outside, they knew the risks. I hope the cases of Archie & other children who have passed away in similar cases through court orders will bring about a discussion & better protocols introduced.

Tony Bland was alive but in a persistent vegetative state, a very different situation.
The legal ruling related to Archie goes into a lot of detail regarding the checks and research used to assess his health.

Tony Blands brain stem wasn't damaged for a start

I totally Agree with you as I reported the first thread along with so many others and it was removed pretty quickly but I can’t believe how many nasty posts there were and I have been a member on here for many years and let me tell you I was Shocked by the amount of disgusting comments.

I know everybody is entitled to their opinion but if I was running Mumsnet I would of barred those disgusting people who posted such vile comments about a dying child and his family.

The crux of it though, is whether grieving exonerates you of all of your behaviour, and it is an important issue to discuss. If, in your grief, you are shouting at your husband, or screaming in the backyard there’s minimal harm done.

But - if you’re causing harm to medical and nursing staff and doing endless interviews and misleading the public, does that also give you a “free pass”? If you’re courting the public can you object that you lack privacy?

Take, for example, the recent video of Archie Battersbee “breathing”. The court document as part of the request to be transferred to the hospice noted this, and discussed how the ventilator changes could be attributed to condensation in the tube or to positional changes, such as Archie’s legs being raised. Someone astute had already noted that, in the reflection on the monitor, Hollie could be seen doing exactly that.

Now, this video was reported far and wide as an example of how he was improving, breathing and getting better. The hospital clearly knew exactly what had happened.

Should the hospital have come out and said so? In the future, should all recordings from inside a hospital be banned?

I don’t think these conversations are “vile”, with the rise of social media they are very important. Would anyone want to be filmed on a ventilator, in an adult nappy? Should staff in hospitals have to deal with accusation of murder when just doing their job?

If the media was banned from identifying the child they wouldn't gain half as much traction. I suspect in this case the mother will regret being so public about this mind.

EveryFightBeginsWithAFall yes I know he was in a persistent vegative state but there was no hope of him recovering, just like Archie. He was still kept alive for nearly 4 years before his parents went to court to be able to withdraw feeding & medication to allow him to die, would the right thing have been to allow him to die not long after the disaster? Like I said we need some sort of independent medical tribunal service to deal with cases like these so that families don't have to go to court & there should be a right for parents to be able to have clinicians of their choice examine the patient & give their opinion whether there will ever be chance of some recovery.

I think I posted this on the previous thread. My ex husband (not an acrimonious split) was in ITU about 10 years ago, ventilated. Our sons (then aged 22, 25, 28) were nok. The truly wonderful ITU senior sister allowed me in to visit with the boys as they were terrified. No other visitors were allowed, immediate family only. There was a rule that no photos were allowed. He made a full recovery.

I’ve been surprised in this case by the photos taken, and by the number of seemingly random visitors (including an MP!) allowed into PICU. Infection risk apart from anything else.

Yes generally in ITU no photos are allowed because the patient cannot give consent to them being taken. For children it gets a bit more wavy, but as this case shows, it'd be better for the patient if photos were banned. Parents play a big part in children's healthcare though and it would be seen as savage to not allow them to take photos of their children- most keep them for themselves and loved ones in case the worst happens and not to plaster over the media for their own agenda mind.

There was a rule that no photos were allowed

I suppose some families will always ignore this, and a lot of allowances are made if the patient is a child.

Should the rules actually be enforceable?

My local ED has a “No one can abuse a member of staff” rule. They are aware they have a right to be seen and for a second opinion if they are unhappy but they will be - and are - sent to another local hospital to facilitate that if they kick off at staff. Pretty impossible to organise an inpatient transfer of a PICU patient though, just for being abusive.

I think there needs to be much more accountability for what's said in the media.

Don't shut down freedom of speech because that's a dangerous precedent.

But journalists need to ask pointed questions and challenge (you can do this kindly and compassionately).

What we saw was lots of journalists (one looking very uncomfortable) having to put a one sided story told with strong emotions out there and not one asked questions that challenged the narrative.

And I think that needs to be done to protect BOTH parties on each side. Some of the things said emotionally could and were slanderous and allowing someone who's emotionally charged and in the throes of despair a free platform exploits them as much as it damages a party who can't defend themselves.

Ava I think the fact it got to a long thread 6 before people who hadn't even been on the threads came and got them shut down deliberately by posting inflammatory comments show that I'm actually fact most people weren't posting nasty things. It would never have got to 5500 odd posts if they hadn't been civilised up to then.

From what I understand though TB wasn't supported through ventilation?

Removing a machine breathing for someone and keeping them alive is different to removing nutrition and medication from someone that is breathing for themselves.

Excellent discussion on bbc news right now.

Brings up a lot of points made on the thread.

He was on a ventilator, you must be getting confused with the fact he didn't need to be sedated- a huge huge huge difference.

thank you
there are points to be made on the whole

re medical ethics,
catching up on news as per recommendation

It's only other people that keep trying to take the debate backwards. The thing is though the debate has now evolved and moved forwards onto the wider issues brought up by previous discussions and as such we aren't really debating that case anymore. Like I said, people can start their own threads for that. What I want to debate here are those wider issues we now face, what if anything can be changed, if organisations like the Christian centre should be more tightly regulated and how the fallout can potentially impact on the rest of us. We should be debating those issues separately because (as evidenced in today's news) the Christian centre are already making waves for reform using their own agenda which may not necessarily be a good thing. This could also potentially impact on abortion laws.

I'd also like to add that so e very good and valid points have already been put forward on this thread regarding anonymity and reform.

That isn't all that matters.

Stop trying to shut down what is a civil and important debate.

It's meant to be a debate. Just not the one you are trying to turn it into 😉

The parents were exercising their legal right to take this to court to do what they felt was right for their son. But you think the parents legal rights should be removed because you think ... doctors are always right? They're not. I don't think you fully realise that until you're a victim of their negligence, and we must have the right to challenge them through the courts if necessary. These threads are ghoulish even though you all think you're very clever and better than the parents because you'd never do what they did. Suddenly everyone's a medical expert. I do hope you never have to take a doctor treating your child to court because you fundamentally disagree with removing life support for your child. And that's what this was really about. But you think they should meekly accept the doctors opinions when they don't believe it was the right thing to do. That's why the courts exist.

Banning parents from taking photos of their own children in hospital is a frankly idiotic idea.

did you read the posts properly @LearnedAxolotl
banning photo sharing
banning media sharing with actual names
i think was touted and seems sensible,
although may be not workable

Re photos, I agree that parents may want to do so, but maybe they need to be advised about consent, and to think about whether the child would want photos shared on social media. Certainly in high profile cases the press have no scruples about publishing pictures from sm.

You clearly haven't even read what people are saying. Perhaps post on another thread if you don't understand what this one is about.