A comment about 'Inside the Ethics Committee'
There is a BBC Radio 4 series, called 'Inside the Ethics Committee' - the most recent series, has just finished unless I'm mistaken.
One of the recent programmes:
http://www.bbc.co.uk/programmes/b04brpdk
was about the ethical and legal issues, around the treatment of patients who have lost their own decision-making capacity because of dementia. Dementia is an awful illness, but I wish to draw attention to one of the comments about the programme, by Sarah Morpeth (which I will copy below).
Sarah touches on a host of the things, which I have been 'banging on about' for several years (in connection with end-of-life). I have uploaded for attachment, a one-page PDF that links some of the things said in the programme, to things I have written here on DIC and on the BMJ website.
I would also like to comment about this, from Sarah:
'The current law seems to me to enshrine an outdated paternalistic attitude that we lay people are not capable of making decisions or taking responsibility. Indeed I have been patronised by a range of doctors during discussions of 'escalations of care' who have told me that it's best for me to have the 'burden of responsibility' taken off my shoulders. I actually think that the medical team should have the burden of responsibility taken away from them.'
I'm not so sure that the current LAW enshrines that 'patronising attitude' - it is certainly 'enshrined' within 'professional behaviour and/or beliefs' - but the crucial question of 'lay capability to make decisions' actually seems come out as 'the capacity of laymen to make such decisions, is enshrined in the law':
The title of that discussion piece - actually, it is a logical deconstruction of the consequences of lay welfare attorneys being empowered, rather than a 'discussion' - is 'Sometimes thinking can help'.
The issue of 'burden' is a fundamental one - it is hugely burdensome, to make life-or-death decisions about someone else's life: and that is true if you are a relative, or a clinician. Personally, when my mother was dying and was refusing treatment, I was already 99% sure that she 'wanted to die' - even so, I STILL HAD TO MAKE SURE (I had to ask her - admittedly I did not say 'Do you want to die ?', and instead said 'If you don't take the medicines and energy drinks, you will go to sleep and not wake up again - is that what you want ?'). Clinicians tend to not ask, and then to intervene to keep patients alive too energetically - there is a 'burden' imposed on family by such behaviour, if the family are convinced that their loved-one 'wants to go'. There is also a complication, around the concept of clinical confidentiality - something most clinicians think they understand, while many are 'uncomfortable' when you question them about the Mental Capacity Act.
I have stressed the importance of trying to avoid making life-or-death decisions, in my piece at:
http://www.bmj.com/content/347/bmj.f4085/rr/652862
I concluded that piece with:
'A huge advantage of talking to patients 'early', is that you can get clear decisions from the patient about things such as attempted cardiopulmonary resuscitation in the future - then, you can tell everyone involved what the patient has decided, and everyone can just follow the patient's decisions, which is much less challenging than to try and make decisions in lieu of the patient, whoever is trying to make such 'proxy decisions'.
I have also attempted to contribute something to the 'patient confidentiality' issue, at:
http://www.bmj.com/content/348/bmj.g4094/rr/703333
Finally, there is a remaining issue, even if clinicians and family and friends do 'get round to properly talking to each other' - clinicians have got a love of the phrase 'shared decision-making' and I have got a visceral hatred of the same phrase. The reason I find 'shared decision-making' so vexing, is explained at:
http://www.bmj.com/content/349/bmj.g4855/rr/761712
I concluded that one, with:
'It is true, that many decisions 'cannot be sensibly defended' unless a lot of people have been involved in discussions - but, unless the final decision is made by a group of people, with a voting system in operation, where is the 'shared decision making' ? When clinicians write the phrase 'shared decision making', I usually think to myself 'Please explain the detailed mechanism of this'.'
The comment posted on the BBC website by Sarah Morpeth, which hit so many nails squarely on the head, is:
I have listened to a few of your really interesting programmes. I may have missed this, but I think a much more in depth discussion of the law around people without capacity
would be interesting and helpful. My Mum is now in a vegetative state, following herpes encephalitis. I was astonished to discover the legal position that in the absence of a power of attorney I have no decision making capacity on my Mum's behalf. As an
ex-lawyer, I had no idea that this was the position and a straw poll amongst my friends demonstrates the same lack of awareness. We all assume that as next of kin we have
rights - but we don't. We only have the right to be consulted; the decision is actually that of the medical team. There is guidance around the 'best interests' concept - but not really unpicking what this means. In my view, the medical team's role should be to
give advice; the people best placed to decide on a person's 'best interests' are surely the family, taking into account the medical advice. The current law seems to me to enshrine an outdated paternalistic attitude that we lay people are not capable of making
decisions or taking responsibility. Indeed I have been patronised by a range of doctors during discussions of 'escalations of care' who have told me that it's best for me to have the 'burden of responsibility' taken off my shoulders. I actually think that
the medical team should have the burden of responsibility taken away from them. In retrospect I wish so much that we had done a power of attorney; your recent discussion of advance directives did not mention powers of attorney - the latter are far more
useful. Advance decisions require a level of specificity while a power of attorney simply would have put me in my Mum's place for all decision making.
(Sarah Morpeth)
Associated files and links:
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Inside the Ethics Committee Some Points.pdf
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As always Mike you get right to the hub of what is important. I will send a comment to dementia friends who may also wish to become involved in the debate.
Lets hope this will trigger a debate that starts changing attitudes where they matter and doesn't get dragged into we need a change in the law, which never seems to me to result in any real attitudinal change.
Hi Liz,
We don't need a law change: we just need the professionals to start to read what the law actually says, and to not impose their own pre-existing belief sets onto it, introducing 'bias'.
We need everyone - patients, family and professionals - to get together and try to all work together, to do their best for patients. Without this 'we are the professionals, we know best' 'attitude' inserting itself where that simply isn't true.
Dementia is horrible - I can't say that, too much.
I've just found this piece from 2014 while I was looking for something more recent - it seems, on the basis of the PDF, that I'm still presenting essentially the same arguments re the Mental Capacity Act as I was back in 2014: which must indicate that I haven't made much progress!
I should point out, that one thing in the one-sheet PDF might be a bit unclear. In the centre of the page, is something which Sarah Morpeth said during the radio programme, and Sarah's words are in BLACK text - the sentences in BLUE and GREEN which have got associated arrows, are my inserted sentences.