A brief comment about the Charlie Gard court ruling
There has been a lot of discussion - Twitter, Facebook, TV/radio, etc - of the very distressing court case(s) involving Charlie Gard.
During BBC Radio 4's 'Today' programme last Saturday (ca 7-50am), Professor Dominic Wilkinson was talking about the court ruling. He explained, unless my recollection is flawed, that he had been surprised that the courts had prevented Charlie's parents from taking him to the US for the 'experimental/novel' treatment: the argument seemed to hinge on 'as the NHS would not be paying, traditionally judges have allowed the parents to take such a course of action'.
I wish to discuss that 'traditionally' which I wrote.
'Traditionally' there was an application of something called 'Bolam' quite widely, but it was made very clear by the judges in the Montgomery ruling that, using my phrase here, 'Bolam no longer applies to consent'. Put simply, 'Bolam' was the idea that if a clinician's decision was 'in line with consensus clinical opinion', the decision was 'legally acceptable'.
What Montgomery made clear, in the context of mentally-capable adult patients, is that our courts no longer consider that Bolam applies to 'consent': we are now in an era when the legal requirement is for GENUINE Informed Consent. Clinicians inform - then the patient alone decides.
The judge - and, in principle, everyone else (the hospital clinicians and also Charlie's parents) - should have been making decisions 'in Charlie's 'best interests'' because Charlie could not legally make his own decisions. And 'best-interests decisions' are the equivalent for patients who cannot make their own decisions, of consent from patients who can make their own decisions. So 'best interests' is not as simple as 'is there a possibility that the treatment the parents wanted to try might help Charlie'.
The judge did have to make a decision which balances all of the factors - the proposed treatment, how much pain Charlie might be in, etc'. It isn't as simple as 'the parents could pay for the treatment they wanted to try' - the two factors in that (the prognosis if the treatment were attempted, is definitely a factor in 'best interests' decision-making: and 'the NHS would not be paying', which is not a factor in Charlie's best interests [although if it had been 'the NHS would have to pay' it could be a legitimate reason to rule that the NHS need not provide {or pay for} the treatment]) are only CONSIDERATIONS DURING best-interests decision-making.
What does really bother me about this awful case, is that the court did not express an opinion about what should happen, if the court supported the withdrawal of Charlie's life support and decided he could not be taken to the US for that novel treatment. I don't think - in such an already 'heated and fraught situation between the clinicians and the family' as this one clearly already was - that 'can Charlie come home to die' should have been left for the hospital and the parents to 'fight over' after the court ruling. I think it would have been 'common sense' for the court to have 'strongly indicated' whether attempts should have been made to allow for Charlie to die at home, if his parents wished for that to happen.
Another decision taken out of parents rights poor little charlie and his parents,talk about end of life care why couldn't a nurse go with them in an ambulance to their home for his last hours,seems no progress being made everyone knows better it seems than the actual parents.
Heartbreaking.
Just watched Hospital bbc 1 from last night all about mental health issues in the community,as a support worker of over 27yrs experience in the community looking after clients with dementia I feel totally fed up with successive governments not addressing this issue.
In my humble opinion n h s and social care should've been integrated years ago.
Hi Neil,
27 years experience entitles you to an opinion!
It isn't obvious exactly how to properly integrate NHS and 'social' care - the problem always comes down to the 'who is paying here?' question, because the need to join-together 'continuity of care' seems obvious when you set aside the 'who pays' issue. Your 'it should have been integrated years ago' opinion is one I think is shared by many people - including me - but it is very hard to achieve!
If there is one thing that leaps out from the media coverage of Charlie Gard, it must surely be how complex, fraught and 'possibly horrible' the process of 'best-interests decision-making' actually is.
Impossible for Charlie, but I think that goes to show how much better my basic contention for adult end-of-life - 'try to get the decision in advance from the patient, and then just do what the patient wanted you to do' - is than any alternative: because the only alternative, is to have SOMEONE WHO ISN'T THE PATIENT making the decision - which necessarily involves 'making best-interests decisions' of the type which are being made about/for Charlie Gard.