Argue the Toss: Correct 'Ownership' or Inappropriate Appropriation
I was minded to write this piece, when I was finishing off a piece for an e-mail I have just sent to some NHS folks, in which I argue that 'Shared Decision Making' should now be dumped and replaced by Informed Consent, in connection with mentally-capable patients.
I went on to argue, that a lot of the SDM 'principles' - notably the 'shared' and the idea that better-informed decision-makers tend to make better decisions' - could however be usefully incorporated within behaviour if patients lack mental capacity.
In essence, my contention is that at the moment, professionals 'are trying to claim 'ownership'' of things they do not, logically, 'own'.
It makes perfect sense, for clinicians to 'claim ownership' of things which require clinical training and clinical expertise: diagnosis, prognosis, etc.
But I have observed, that clinicians seem to think they have 'ownership rights' over Mental Capacity Act best-interests decision-making: that isn't rational, considering that a suitably-empowered lay attorney (or lay court deputy) is the 'ranking decision maker' for best interests decisions (see sections 6(6) and 6(7) of the MCA). So there are no grounds to believe it is correct, for professionals to 'claim ownership of' MCA section 4 best-interests decision-making - laymen are just as capable of doing that, as the professionals are, because THE LAW TELLS US THAT MUST BE TRUE.
During best-interests decision-making, it is usually necessary to 'work out what the patient would have decided, if he could have decided himself': this involves 'a deep understanding of the patient as an individual' and for that, it is logically correct that the family and friends of a mentally incapable patient 'should claim ownership'.
For other things, such as 'safeguarding', the concept of 'shared ownership' makes sense: everyone should be keeping an eye out, to see if anybody else is 'doing something wrong'.
And for some things, like 'trust' and 'confidentiality', the professionals are currently 'unacceptably asymmetric in their apparent beliefs'. Most clinicians seem to think that they should 'be trusted by default' but their attitude to family and friends is not one of 'trust by default', which I personally find very offensive (especially during end-of-life). And my feeling is that clinicians would be a bit unhappy if a son said to them 'Dad told me his views on that, but he told me not to explain them to you', while clinicians at the same time use 'patient confidentiality' to impede discussions with family or close friends.
I think that 'getting ownership right' is one more thing, which I will be incorporating into my end-of-life pieces, in the future: it is certainly one of the many starting points from which end-of-life can be usefully analysed (the other stronger starting points, being 'get the law correct first' and 'properly analyse the uncertainties: work out what we can know, what we could never be sure of, and what we could understand much better if we changed our behaviour and drew that information out').
I posted a comment (the BMJ calls such comments 'rapid responses') to a piece in the BMJ by Professor David Oliver a few days ago, and he didn't seem to like to it: he posted a comment in response to mine, and I then posted a comment in response to his - you can find them at:
http://www.bmj.com/content/351/bmj.h4959/rapid-responses
There is something I don't quite understand about his comment - I'm NOT saying that he intended this, but for a reason which isn't clear to me, he wrote in his comment:
'He can rest assured that despite an insufficient understanding of the issues around mental capacity among many health and care professionals, I have to deal with the issues daily. I have a Masters Degree in HealthCare Ethics and Law, and I teach applied healthcare ethics and law to professionals and philosophy students.'
I don't understand, why he needed to point out that he has a Masters in ethics and law, and that he teaches courses in the subject, AFTER commenting about 'mental capacity'.
Because, as I've pointed out more than once - including above - as the law allows for a layman (untrained in ethics and law - required to apply the MCA and to read its Code of Practice, but NOT 'trained' as a requirement of appointment) to make the best-interests decisions about the application or withholding of [any offered] medical treatment, Professor Oliver's Masters is probably more of a 'confounding factor' than anything useful (re the Mental Capacity Act).
See my pieces at:
It honestly does seem to me, that although our law no longer supports the idea, at some level medics 'think they own their patients' - in much the same way that once-upon-a-time 'husbands owned their wives'. Husbands did once 'legally own' their wives, but that has changed - medics don't own patients, and they are now only considered to be the authority in whether a treatment would be clinically successful (and NOT in 'whether the treatment should be administered'), but it isn't clear to me that the medical profession has yet come to terms with this change ?
Professor Oliver also wrote things I would never write in his piece - 'the nuances of mental capacity assessment' doesn't really fit with the MCA from my position, although he went on and later wrote 'decision specific mental capacity as determined by the tests set out in the Mental Capacity Act' and half of that I might have written (mental capacity is decision specific - but the Act does not in my opinion 'set out tests of mental capacity').
Clinicians, irrespective of how many degrees they possess, cannot 'lay claim to the interpretation of the MCA' while sections 6(6) and 6(7) of the Act are there - average laymen MUST be capable of adequately interpreting the Act !
If everyone accepts that, perhaps we can all move on to the bits of the Act which nobody - including judges - has so far 'deciphered' !
I am currently 'complaining to the authors' of the current version of the EPaCCS guidance - for the guidance, see:
http://www.hscic.gov.uk/media/18510/1580112015spec/pdf/1580112015spec.pdf
EPaCCS is an online database, developed locally, with various bits of information about patients who are expected to die within about a year - the idea, is to make it easier for people such as 999 paramedics, to 'get at important information'.
There are things in the current guidance, which are 'inappropriate imposition' and 'inappropriate simplification'.
For example, the guidance seems to REQUIRE (not allow for the optional recording of, but to necessitate the identification/nomination of) 'a main family carer'. I've moaned about that, before, a couple of years ago (and the moan is actually here, on DIC, in my 'poser' series of questions).
It also seems to wish to restrict 'direct family contacts' to one, or perhaps two, people - i.e., that 'the NHS' seems to only want to directly 'update' one or two of the laymen involved in the care.
And - weirdly, as I would have expected the clinicians to have read the legislation - EPaCCS also seems to assume that a patient can only appoint a single Health and Welfare Attorney (which I habitually shorten to Welfare Attorney) under the LPA: in fact, you can appoint several attorneys.
As I have - with a certain amount of 'feeling' - made clear to the people connected with the EPaCCS guidance, it seems to me that this is an example of the professionals trying to impose 'the sort of structure and hierarchy which naturally exists within professional circles, onto families and friends, where there is often no well-defined 'hierarchy and structure'', SIMPLY BECAUSE THAT IS EASIEST FOR THE PROFESSIONALS/SYSTEM.
It seems to be, an example of something I commented on at:
http://www.bmj.com/content/350/bmj.h3181/rr-2
'... at the moment behaviour sets for EoL home death seem to assume an 'idealised model' which is very different from the reality of many EoL home deaths. The guidance and protocols, should be based on the reality of EoL at home, accepting the many complications, and not on 'a guidance-writers' wish-list of how EoL at home should work in a
'perfect and much-simplified world''.
These things have to look right, from the perspective of the patient and the family - there simply 'isn't a main carer' if the patient is being supported by 2, 3 or 4-or-more carers, and each one is equally involved in, and important to, the support of the patient.
If 3 daughters of their widowed mother, are 'taking turns to stay at their mum's home to help her', it is madness to just phone one, or perhaps two, of them, if the NHS has got some urgent information to pass on - it should directly phone, all three of them [unless the first one phoned indicates 'I can pass this on'].
Why does it seem so hard, for NHS professionals to 'stand where the patient and family are standing' ?