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. 🥺

Iirc that was the first case of its kind to go to court to allow meds to be stopped.

My dad was on life support in 1995 and although he couldn't be pronounced brain stem dead due to taking an unaided breath when off life support we were able to withdraw meds and he died within hours .

Being brain stem dead and withdrawing ventilation is totally different to cases like TB where they have to withdraw meds and nutrition

Posters have mentioned mediation.

I'm skeptical it would prevent such legal cases going forward in the future.

Fundamentally, mediation presupposes that a position of compromise and/or agreement can be reached through good "neutral" communication.

In these high profile cases there is nothing to suggest that any different form of communicating the prognosis or mechanisms for further discussion would have resulted in the patents making different choices or that any possible compromise could be found - there is simply no middle ground between sustaining or withdrawal of treatment.

Personally I think there is a risk that you simply add in a time consuming additional step before the courts are asked to intervene.

Was this TV or Radio @itsgettingweird ? I'd like to have a look/listen.

But they were not "disempowered"

They got access to the highest courts at lightening speed. The only "disempowerment" was caused by their refusal to believe medical evidence and the deluded conspiracy theories about the hospital, doctors and nurses.

What would the subject of such an enquiry be? Having read the court decisions I can't see a scintilla of doubt that the hospital did not follow correct procedures throughout.

The only point , as far as I can see, would be to conclude that possibly families' rights of appeal should be cut off earlier to avoid the fiasco of this protracted death. I doubt that's what Dance is looking for. I would not want that either if it resulted not only in stopping her pointless appeals if it also prevented the father mentioned elsewhere in this thread having recourse to the courts.

I've already said that I actually think the system medically and legally worked reasonably well this time round and allowing people to disagree with my professional opinion is something of an article of faith for me personally. That said, there are nearly always opportunities to learn and do things better in future and so it's important that an enquiry is held and the issues publicly discussed.

It is an important discussion and I am choosing not to engage with posters who would prefer to shut it down.

I would also prefer not to lose the safeguards of allowing the media to report such cases, but I would like consideration given to doing so anonymously where it affects the privacy and dignity of a child or when it could affect health care professionals involved for simply doing their jobs.

Mediation wouldn't have helped here. I agree it would only have added another layer before the Supreme Court/ ECHR gave its final decision.

I think that children should be afforded anonymity in cases like this and pictures of them in hospital forbidden.

I agree. Protecting their dignity is really important and photographs / details about their situation should be prevented.

TheLassWiADelicateAir no, I agree that they were not disempowered. But they feel disempowered. My whole point (see my earlier posts) is that we need to both deal with the facts and with how people feel, because if we don't they are loose cannons who are prey to right-wing extremists or religious extremists and then society pays the price for the hell they can unleash.

What would the subject of such an enquiry be? Having read the court decisions I can't see a scintilla of doubt that the hospital did not follow correct procedures throughout.

I'm wondering it one thing to investigate is how well parents are supported. What kind of counselling is available to them at this time? That can make a difference to how parents react.

Yes. And hospitals shouldn’t be named in the press either. There was a different childrens hospital involved in a previous controversial case (where treatment was being withdrawn), and ‘supporters’ of the child gathered outside the hospital to yell all day and evening. My toddler cousin was inside in critical condition, and he couldn’t sleep because of the noise made by those idiots.

If people make noisy protests outside a hospital those people should be jailed in my opinion. Deliberately disturbing sick children and the staff trying to care for them should be a crime carrying jail time. It isn’t protest (go protest at a government building!) it’s child abuse.

An Inquest not an enquiry. A lot of what has been said needs scrutiny and clarification about what critically patients and families gain from critical units, when that level of care is appropriate and beneficial and how, why and when treatment and life support is withdrawn ,. who makes the final decision and the patients and staff right to anonymity and privacy. I imagine many people have been left distressed, anxious and confused by whats been allowed to be said and written.
I can understand why the family think change is needed but sometimes those changes are not quite what you hoped for and may result in tightening up the current rules and legislation.

I believe, from a professional perspective, that there should be tighter regulation regarding what parents are allowed to post about their children online in general. Especially images, and especially before the child is old enough to understand the implications of having their image or information about them posted on an online platform. Would you take a photograph of another adult and post it online in a public venue without their permission and consent, perhaps with a caption giving some information about them? I wouldn't. Why should children deserve less? Its difficult to make hard and fast rules about this because of course children's understanding and willingness to have an online presence increases with gradually, like their ability to consent to medical procedures. But I've thought about this a lot, and bear in mind this is my area of research, and ultimately, I don't think people should post pictures of their infants and toddlers on public social media. Private channels to relatives are a different matter.

This family is an outlier. I wonder how many other families have been in the same position since this started- we'll never know.

The situation isn't a question of how well supported they were but is because of their refusal to accept facts.

I really hope the hospital staff are getting the support they need, with the latest developments the stress is just going to keep getting worse. I imagine that unit may lose staff after this. 😔

I agree- an enquiry may very well lead to the conclusion that this should have been drawn to a close sooner.

An inquest is quite different and there should be a formal inquest into the death; the cause of which was strangulation, not what the hospital did.

I don't think anyone is advocating stopping free speech.

But with freedom comes responsibility and the responsibility to gently challenge slanderous comments isn't forthcoming.

I feel if you just give the freedom you are also exploiting people at their most vulnerable.

BongoJim
The cases I have highlighted illustrate when parents have gone public in their disputes with hospital trusts and that has highlighted abuse or poor treatment. I don't see how highlighting these cases is derailing the thread. It might be inconvenient as it highlights why restrictions on bringing these cases to peoples attention could be damaging. If you want to debate this issue you need to look much more widely at the kibds of situations any legal restrictions would impact.

Cansu that family haven't made slanderous comments though.

This is what we're saying needs to change.

Not the ability to use the media for good. But the responsibility of the media to fact check what they print or show for viewing and to give a balanced hearing.

Lots of posters ARE advocating making it illegal for parents to discuss these disputes in public.

No they haven't made slanderous comments. What is slanderous? If I say hate a hospital doesn't treat my child humanely, is that slanderous? I am stating my opinion. Should I not say this? Should these families not say this?

Bore it was bbc1 breakfast news this morning. About 7.30ish iirc.

Stating publically that you are not happy with a hospital and/or disagree with a treatment plan (up to and including taking legal action said hospital for perceived wrong treatment) is not the same at all as accusing hospital staff of wanting to "murder" someone to harvest their organs. The former is an important right. The latter is

I remember the very excellent documentary about the care home that was abusing their residents with LD. I actually subbed watching that.

But the documentary didn't make statements based on emotion. They stated facts and backed them up with evidence.

The media has a great place in spreading a wider message.

But they need to be responsible and where it's clear someone who is vulnerable is talking out of fear and anger I think there needs to be a point they don't do live interviews at least. And editing still gets the message across but without leaving the person who is emotionally unable to have sensible thoughts vulnerable to saying something that could make them vulnerable as well as the people they are accusing.

(Sorry pressed too soon). The latter is defamation, unless you can prove it to be true that the hospital had such intent.

The ones I see are suggesting no pictures and not naming staff involved personally.

I'm fine with that but agree with you about naming hospitals and LAs or trusts etc.

I do have an issue when families are accusing one party (the one they are challenging) of not allowing dignity and then post photos that do not protect that persons dignity.

Luckily I think this is rare because in previous cases I've seen photos that are dignified.