Charlie Gard 20

[CremeFresh]

Don't know if anyone else has started a new thread .

I've missed quite a bit of recent discussion.
Maryz/Tinsel- I don't think this would be any form of test case, no. There were absolutely no unique legal issues here. IN a different case, however, where a child was less certainly terminally ill but the decisions were recommended on the basis of presumed catastrophic brain injury and future quality of life there would have potentially been an Art14? Type appeal in ECtHR on basis of disability discrimination (see also UNCPRD) but it would take a pretty specific case for that to be in play, one where the only reason a treatment is not being permitted is because of presumed quality of life rather than treatment efficacy/futility, and where it was already clear that the illness was not as severe as this case. That would be my first thought. Second thought would be about what evidence will suffice for approving experimental treatment in children. There was really hardly any evidence at all here to rely on. Again it would take a different case to be able to fully explore that.
There is no way they could widen the duty of care to these parents, unless they argued for some kind of psychiatric harm from witnessing traumatic events but this is really very hard indeed to prove and I dont think they would have the correct status here to be victims because although they will be traumatised (as many on PICU etc are) it would not meet the very strict criteria for damages.
The only other thing I could think of was for a loss of a chance case (eg Hotson etc) but the chance was never ostensibly there in the first place - the delay did not cause the chance to be lost. A. The severity of the illness meant prognosis completely terrible b. Prognosis likely fixed by time assessed for treatment trial c. Treatment not on balance of probabilities likely to bring about a better quality of life/any meaningful recovery, at all. It seems clear to me there would be no valid case in negligence, and I cannot think of this being a test case either.

I'm rather rusty and that's from the top of my head, but I really can't think what they'd try to use to pursue legal action (Art 8 for example wouldnt cut it because his best interests had to come first)
It was really on facts not particularly different to other cases that come to court. The only difference was the huge media attention.
I've heard there are more cases of this nature year on year. My only concern is that now more people will feel they have to do this, when this is not at all how things should be.

Thing about the lawyers, Maryz- I have just read that as didn't realise they'd switched. I can only think it was more of a mutual parting, or they were honest about prospects of success and parents did not want to hear that. I cannot imagine Bindmans would wish to proceed with a case to appeal when the legal issues are pretty cut and dry and they are thus highly likely to be unsuccessful.

shs back on there age?

Leghoul with regards the 'presumed quality of life' argument. I'm approaching this from a medical ethics rather than a legal perspective. It was interesting to hear Raaon Gillon talk about Charlie's case on the Radio 4 show linked to a number of threads ago. He actually said ( and I'm paraphrasing) that whilst it was acceptable for GOSH NOT to administer the therapy themselves, he felt that placing a value judgement on Charlie's life to stop OTHERS ( I.e Hirano et al) from administering it was a step to far. And I think I still struggle with the notion of measuring quality of life. My perception has always been that this family believed Charlie could be a 'normal' little boy, riding a bike etc. There was never any talk about them being prepared to care for him regardless of any disabilities he might have. ( at least not widely reported)
Would that be significant in any future litigation? The fact that any talk about quality of life was based on him having a 'normal' life? Which was NEVER going to be a possibility even if the treatment had the slightest effect?

I learnt on MN that the collective intelligence of any mob is calculated by taking its most stupid member's IQ and dividing it by the number of people in the mob.

Seems about right to me tbh

I think the R4 ethical argument from the man from Imperial (think same one) is valid, but not at all in Charlie's case sadly. It would be fine to deploy that reasoning where doctors are saying to parents, but look, your child will not have a quality of life, they are brain damaged/look at this MRI and all the areas of damage/whatever happens they won't be normal and so on. I abhor that form of simplification of quality of life to an objective measure. As we all know many people with brain injuries, as an example, do well and live meaningful lives from which they can derive a quality of life/enjoyment/etc. Even in severe cases there may be a benefit to the person, they may enjoy a particular activity or music or whatever it might be, so in my book the only person really qualified to say what their life is like is that person. So yes, to say this about anyone with a brain injury does sometimes feel it is verging on value judgements. BUt to say that about Charlie, it was not that at all. He was so very unwell that rather than saying 'is it in his best interests to die' which is frankly nonsensical - how can it be in anyone's best interests to not exist? Really? The nub really was 'is it in his best interests to prolong an inevitable death' (while experimenting on him) - or 'is it in his best interests to undergo further potential harm and distress before his death'. & whether desperation should permit families to go for the only hope they can get, leave no stone unturned despite an evident futility, putting the child through additional harm in the process.
So in that respect, Imperial man was wrong. In a different case however, where there is a real treatment and a less terrible outlook, then maybe the potential harm could be weighed against the potential benefit for the patient with a different result. In Charlie's case there was no value judgement on the basis of his disability/future QOL. It was an educated judgement based on his very bad clinical picture.

Quality of life is described objectively in various judgments re what it would mean for a patient in terms of feelings/function and so on.
I am quite interested in self reported quality of life though, and there re a load of different score systems for that. It's harder for paediatrics, but we have the technology to integrate these issues into better supported decisions I think - won't get rid of uncertainty but might help those difficult conversations and back them up.

Agree leghoul, I never understood the description of it as a 'life or death' issue with regards to the legal aid discussion previously.

Because, sadly, it was never an option, life was never an option.

' The nub really was 'is it in his best interests to prolong an inevitable death' (while experimenting on him) - or 'is it in his best interests to undergo further potential harm and distress before his death'.'

That gives me so much clarity. Thank you.

I can't think of a way of putting this that isn't potentially appalling, so I may just report my own post straight away.

I really hope that Charlie's parents can eventually move on (and use the £££ raised for some constructive purpose.

But if they can't, or if that isn't their intention, I would actually quite welcome them suing GOSH, or at least trying. Because I genuinely think that GOSH could not have done more to help and accommodate them - it may be that GOSH could have done more to explain to them, but that's a different matter. And I think it would be good to have this enshrined in law so other, equally passionate, loving, but misguided parents don't actually have this option open to them.

I would actually be quite grateful for some case law that could prevent this happening again. I don't know if that's possible from Charlie's case, but if it is, I'd like to see it happen. Poor little boy. Six months of unnecessary (probable) suffering.

Monty I wouldn't because where is the £ coming from for GOSH's legal team??
Fault lies with the American doctor who gave them false hope & charlie's barmy army for making it near impossible for c&c to back down
A friend of mine is a ca member & im so appalled by her behaviour I can't talk to her. Also as a child GOSH saved her life!

Charles Arthur has written some relevant interesting and factually correct articles about this . Ties can't link but one called Charlie Gard : facts medicine and right wing fictions

Leghoul - what really brought the quality of life issue home for me was a statement saying Charlie's only experience of life was pain. He was generally unresponsive, except two doctors had witnessed what they interpreted as a response to stressors.

I think being on a ventilator is not only uncomfortable in itself, but the suction of secretions which goes with it is a painful process. I also think I saw a catheter in the last photos. There was a report that doctors were concerned about his kidney function.

Although CY said she could never let Charlie suffer, I think by the end she had lost touch with reality. Her remarks about him still enjoying tickles and watching an i-pad, at about the time of the rooftop picnic, were so obviously wishful thinking.

It must have been so difficult for the nurses and doctors carrying out these procedures. I, too, recommend the article in today's Guardian Online from the father thanking staff for the 5 days he and his wife were given with their newborn brain-damaged daughter. I hope it gets a lot of publicity.

Thank you powered I have bookmarked those articles to read later.

I do wonder if legal firms will be less willing to take on pro bono cases like this. I imagine the cost of this case has been huge not only the cost of the case but also in the cost of lost paid for work. I'm not sure there will be as much willingness to take on cases

I think they will be less willing. This firm may have realised this case could go the European court, but they didn't really sign up for the most recent emergency applications which must have entailed a lot of staff dropping everything and turning work away. Plus there is a benefit to them in the publicity this case attracted; that won't happen if such applications become commonplace.

It seems (please correct me if I'm wrong) that the parents' first set of lawyers were connected in some way to the GOSH lawyers

It wasn't the same solicitors' firm. I think this conception derives from the fact that the first barrister was from the same Chambers as Katie Gollop. However, all barristers are self employed so there is no conflict; and this is not at all uncommon, especially where a number of barristers in the same chambers specialise in the same field of law. If anyone remembers Rumpole, he was frequently on the opposite side from other members of his chambers.

I suspect they parted company because the first solicitors and barristers told them an appeal stood no chance of success, and of course they were proved right. Also, Bindmans does a lot of legal aid work, and therefore I doubt they could afford to carry on pro bono.

I assume it was pro bono for the opposite reason, to ensure with the media spotlight on it that the decisions would be watertight, it's why everything went through the judge. The parents legal team was top quality.

Barristers are very different from solicitors, they work for themselves the chambers. They also can't refuse a case that comes their way.

When I or my colleagues have done pro bono work, it's basically been because we felt strongly that the client was vulnerable and needed legal representation, or because the case involved an important point of law that we felt needed to be properly prepared and argued if the law wasn't going to go the "wrong" way. But to persuade the bosses, we usually need to demonstrate that there is some sort of benefit to the firm, normally in terms of the favourable publicity we might get out of it.

We've never been involved in something as high profile as this. As I understand it, the parents were appealing on a newish point of law as to whether parents' wishes should be the overriding consideration; but I suspect their lawyers were mostly motivated both by a view that they should not be left unrepresented, and the potential publicity. And that's fair enough, with some blips (especially the GP at the last hearing) they seem to have done a good job for them.

" The nub really was 'is it in his best interests to prolong an inevitable death' (while experimenting on him) - or 'is it in his best interests to undergo further potential harm and distress before his death'.'"

So in that sense not even a pro life case as there is the third way - no prolongation by medical intervention but not killing either. If you think whatever someone's quality of life it is murder to kill them then simply ceasing to intervene is very different from upping the morphine dose (which latter is the classic and in my view often correct stance taken with elderly dying who have a living will to that effect undertaken by caring doctors which you could interpret as murder).

I presume here there was no third way as as soon as the medical interventions which were keeping him alive were withdrawn then he died without any assistance because he could not breath unaided.

When parents can decide that a 10% chance of life/cure is worth it say of a new treatment but doctors think on balance small chance and the baby might suffer in the meantime even if heavily sedated is certainly a case worth establishing some law over. If someone said my pregnancy were a 40% chance of disability I would say good, as I am such an optimist, that's a huge 60% in my favour. Some other parents would say not worth the chance.

I know many people, young and old, with longterm health conditions including severe mental/physical impairments or significant learning disabilities who have a very good quality of life - they may wish to have to deal with whatever health condition they are stuck with but their life is one that includes enjoyment and purpose, not just suffering.

I also know people whose life from the outside in looks great but they are unable to enjoy what they've got and they themselves would say their quality of life is poor.

I think QoL is mainly a subjective measure and whenever at all possible the person affected by whatever problems MUST be part of the conversation.
Obviously, in the case of a baby or demented adult or unconscious person that conversation is forced on to third parties which is so much more difficult.

Standardised scores for things that are not objectively measurable (pain, distress, QoL etc) have their place and are certainly valuable tools, but I worry about them becoming set in stone, rather than just a guide.

Communication, communication, communication IMO is more important, generally.

It worries me that people feel they can easily make judgement values on someone else's quality of life. I've seen it time and time again in the decades of working for the NHS. A well meaning team will speak of no quality of life, but when the person makes an unexpected recovery they speak of having great joy in little things. One man's junk is another man's treasure, and the same is with perceived quality of life.

And what of those who have any of Charlie Gard's symptoms, dead and blind, unable to move limbs independently? People with these inflictions manage to live more fulfilled lives than some fully able-bodied people. Ask any parent of a child who has severe special learning needs and they will tell you that person experiences highs and lows like anyone else.

It just worries me that we all think we can make that choice for others when it is such a varying subjective and emotive topic.

Lucysky increasing a morphine dose with intent to end life is murder and no doubt about it. Increasing a dose to manage symptoms is not murder. It is the intent that matters. Given how my medical colleagues agonise over these decisions, they deserve to have that process recognised. Morphine toxicity is no joke either. The care taken about this isite so great now, basically since Shipman though I am sureally before that too.

I've just read the article mentioned above
Charlie Gard:Facts medicine and right wing factions
It explains everything in simple and easy to understand words
It is an excellent article and everyone should read it

Dodgy poor Charlie was deaf, blind, unable to move, swallow or cry. He was having seizures as well so quite possibly in pain. I am not sure what the legal definition is but that sure as hell sounds like a dreadful quality of life to me.