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. 🥺

@Geccochebello I believe the main issue with going to the hospice was the high risk of him dying en route, without his family around him. The courts agreed that his death would be more peaceful without moving him and that it would be chaotic if they did.

Perhaps using the term suffocated could imply it was deliberate when it was more the case that he had no ability to breathe independently and was totslly dependent on the ventilator to push oxygen and air around his body.

Flip it around.

Do you think it's in the best interests of someone to die on a motorway/ corridor or lift or even a car park without family by their side - over dying in a hospital.

Forget the medical situation and state of their health.

It's also illegal to mistreat a dead body.

We are lucky in this country imo to have a social and legal expectation you respect the living and respect the dead.

It's really not humane imo to do to a place where no one respects you or your rights and best interests because you're dying or dead.

I think the decision making process worked fine. Hardly any families having to confront such absolutely catastrophic injuries in their child make the same choices these parents did. But, they have to be allowed to disagree and put forward their point of view. In court, the judge can look not just at medical best interests, but more holistically, including the child's own views. This feels right to me. In this particular case, it could only have gone differently if the parents had been overruled more quickly, and time had not been spent by the medical team trying to persuade them to agree to brainstem tests. That doesn't feel right either.

What I wish had worked better was the media reporting. The judgements were very, very clear about the extent to which there was no medical hope whatsoever of anything other than the child's death within weeks. However, this clear message from the judgements was missing from far too much of the news. I think we all would have benefited from the courts being more 'media friendly', so that there was less misreporting of the real situation.

On the issue of parents' rights vs children's rights, I'm afraid I think what we have had in place since 1989 is a gold standard. I cannot see why it would be 'better' to do something that was not in the child's best interests, no matter which other person wants it.

Agree it's excellent and really backs up what a lot of us are saying here. But from an expert which does often carry more weight!

I said on one of the other threads specific all about this case that it seems with such advances in medical processes we seem to have this idea that medicine is the cure all.

But the only guarantee in life is that if death. We cannot stop that unconditionally. We can - at times - prolong it through medication and sometimes that can be for a whole lifetime (50/60 years) and sometimes for a very limited amount of time.

But we cannot (yet!) reverse the death of the brain stem.

I also liked with regards that the explanation between the difference of brain stem death and coma.

Yes, as a non medic I really appreciated the clear explanation of the difference between coma and brain stem death. Among other things it answers the “but they moved Tony Bland!” objections upthread.

Archie Battersbee was almost certainly brain stem dead, but that couldn't be proved. Legally Archie Battersbee was alive.

If a child is legally alive, then the rule we apply is to make decisions that are in the child's best interests, from the range of decisions that are possible, regardless of the impact on anyone else. AB was much more catastrophically injured than other cases that have been in the news (Charlie Gard, Alfie Evans). It was considered reasonably likely that he would die in transit because his brain could not control anything in his body. It was decided that that was not in his best interests.

If the child has already died both in terms of brain function and in law, then why move the body to a hospice before turning off and disconnecting the medical equipment.

As someone else said earlier, we can think of reasons why it might be in HD's best interests for AB to have been moved into a hospice, but there really was almost no argument in favour of doing that when you only consider AB's best interests.

I hope the clc come under investigation and I dont know why they are allowed to claim their representative was a lawyer when he clearly is not and has come under criticism before

At the back of this tragedy we should also look into improving children's mental health services.

Thanks for linking this. It's very well explained and brilliantly written.

It's a shame there haven't been more measured articles like this in recent times.

Agree with this - both about the anonymity and the use of Go Fund Me.

I was very ill as a child (just a few months older than Archie) and was in a coma etc. I'd have been horrified if pictures of me had been taken like that and spread all over the press and SM. I can see why they did it - to raise awareness - but the child should've been protected in some way.

As someone else said earlier, we can think of reasons why it might be in HD's best interests for AB to have been moved into a hospice, but there really was almost no argument in favour of doing that when you only consider AB's best interests.

Exactly.

I still think many people believe the myth that that parents have the right to make decisions for their children in any and all situations.

Parents don't have rights over their children, we have a responsibility to them, to act in their best interests and when there are concerns raised that a parent is not doing do, the state is legally obligated to intervene, assess if this is so and if necessary, use the courts to enforce outcomes that prioritises the child's welfare.

A pp lamented that Archie's parents wishes were ignored. The brutal truth is yes they were, because ultimately those wishes were not judged to be in his best interests, even if it's understandable why the parents made such a request.

I appreciate why people are concerned about the media reporting, but we need to be very careful about limiting public freedoms on the basis of very rare cases, where ultimately the process worked to protect the best interests of the patient and furthermore the transparency of that process is exactly why we are in a position to discuss it.

State services should not be shielded from criticism and families denied the right to go public with their concerns.

You simply need to look at the criticism of the Family Court System to understand that even well meaning privacy/secrecy can result in some appalling consequences that go unscrutinised making the need for reform difficult to evidence.

@BreadInCaptivity excellent post

"In the best interest of patient" is used like a mantra

That's because it's an absolutely basic principle which underlines everything done; it goes along with "First do no harm", except I don't know if they use that one any more

Pretty generally it's decided by both the medical team and the family - with anguish certainly, but usually in cooperation because even in their grief most families recognise the truth for what it is

Luckily the state has to step in like this only rarely, but its an important provision and one which needs to be kept

"In the best interest of patient" is used like a mantra

Well yes.

Why would anyone think it should be otherwise?

"in the best interest of patient" is used like a mantra

This is the one part of your post I thoroughly agree with @Geccochebello

Why do you think this is controversial and why should it be any other way?

@Geccochebello the judgement clearly sets out why (sadly) a hospice move wasnt able to happen

www.judiciary.uk/judgments/barts-health-nhs-trust-v-holly-dance-and-others/

I think one of the main curriculum changes needed is quite hefty emphasis on critical thinking. What we've seen in this case on social media has been really extraordinary levels of illogicality, e.g. the accusation that the hospital wanted to commit murder - if they did, they had countless opportunities to do so quietly over the weeks, they had no need to go through all the imagined contortions of falsifying scans and all the other mad allegations that have been made. Another example was the insistence that the information in court judgments was false - again, it's totally irrational to believe in a scenario where all those judges colluded to do that and the parents' lawyers didn't even bother to point it out.

I suspect this happens due to a lack of education combined with people having had years of being indoctrinated by certain media who don't regard the truth as important. I'm not expecting miracles, but an emphasis in education on examining information critically and rationally might make it just that bit more difficult to con people in cases like this.

i agree, and wonder if today's article was saved for today, to prevent stoking for fire for the family
just presenting the case without arguing it
however i do feel the media over hyped it

I doubt the medical team would want to publicly defend themselves, they do not have to justify their decisions to the media. They are more concerned about looking after their patients and all this just takes away time they spend with other patients and families. It was good to see the statement from the Trust supporting their staff, there may be reviews and questions to be asked about do we need change but one may well be what 'right' does a parent have to refuse diagnostic testing to determine their childs condition and plan their care accordingly,but they just say tests were not able to be performed, they seem reluctant to say why.

I think one of the main curriculum changes needed is quite hefty emphasis on critical thinking.

Could not agree more @Quia

Apologies for the bold fail.

Yes, accusing hospital staff of failing to treat ill child patients humanely is certainly slanderous. That is a factual statement, not a statement of opinion. In this case also accusations of murder and execution were flying around, and those accusations constituted serious defamation.

If it is untrue, it is defamation. If it is true, it isn't. It's not a difficult distinction. The point people are making is that blatantly untrue accusations should not be left unchallenged.

This thread will be deleted and it should. It's distasteful the way certain posters who are claiming to be concerned about the dignity of patients are posting comments that are callous in the extreme.

There is a multitude of evidence of substandard care, unethical palliative care practises and of the NHS ignoring government guidance about critical and terminal patient care. The recent Tavistock case is just one example of the NHS making irreversibly wrong decisions about DC's care. Trying to sweep that scandal, the DNR scandal and the many others under the carpet and trying to make such discussions subject to legal restraints and anonymity does not benefit patients. It doesn't benefit whistleblowers and it doesn't benefit medical staff.

It does benefit those who want to make it easier to erode DCs' rights; those who want to push an euthanasia agenda and those whose 'quality of life' arguments veer into eugenics.