Mike's Cheeky Blog: Publish and be damned, praised or ignored (the most likely) - but publish!

I wasn't sure what to call this piece - it is about the e-mails I sent last week, but when it struck me that they all had something in common (all of my e-mails pointed to pieces I've written online) then I had a title.

I think there is a need for more service users and other laymen, to 'get their positions online', where the world can read them. You also need to be able to point at your pieces - which amounts to 'you need to get a piece published with a web-link that you can use to point people at it'.

Moving on, the e-mails I sent last week, are illustrative of my conclusions about end-of-life: for every step in the right direction taken by 'the NHS', there is a worrying tendency to take an even longer step in the wrong direction.

One of my e-mails, was to a senior nurse who works with dementia patients: I asked her about 'decision-making during long-term mental incapacity', and I'm not really expecting much of an answer, or even any answer at all.

Two of my e-mails, were to the Chief Medical Officer of Scotland, Catherine Calderwood, after I came across her report 'Realistic Medicine'. The first e-mail, was specifically about the reports 'assertion' that 'shared decision making' and 'informed consent' are the same thing - they are not the same thing. If Catherine replies to me, I'll be very interested to see what she has to say on that.

The second of my e-mails, commented on 'Realistic Medicine' a bit more widely. In particular, I made this comment:

'The issue you raise in the third sentence, is incredibly complex - it is so complex, that I avoid discussing that and instead I discuss decision-making for CPR:

'There is a caveat in that people vary to the extent they wish to be involved in making decisions. Certainly it can only really take place when people have full decision making capacity which might not apply for people with cognitive, learning or severe mental health difficulties. Similarly in emergency situations, where fear, pain and distress exist, professionals need to reach an agreement as to the extent their individual patient is willing and able to collaborate in decision-making.''

Another of my e-mails was to the social workers who wrote a new piece which can be found on the SCIE website 'Next of Kin: understanding decision making authorities'. The PDF correctly explains that 'next of kin' is not a concept which is relevant to the Mental Capacity Act. It goes on, however, to state that Welfare Attorneys and Court Deputies with decision-making authority, 'consent to offered treatments' - that is incorrect, for a reason which I explained in my e-mail:

'Having a few of my thousand words left, I'll point something out. A welfare attorney or court deputy whose authority extends over the decision being considered, does not 'consent to the offered treatment': the attorney or deputy considers the outcomes of the offered treatment being applied or withheld, and expresses the decision as to which option (treat or withhold treatment) is in the patient's best interests. Nobody can consent to an offered treatment, when the patient lacks capacity.

This distinction is not anything like as 'inconsequential' as it might appear - because (and pardon the expansion here) the MCA is about separations: the separation between the possession or absence of mental capacity, the possession or otherwise of decision-making authority, etc. And if you do not 'muddle making the decision with consenting to an offered treatment', then you can better understand another 'separation': that the decision about whether an intervention should be offered, is not about 'best interests' (section 4(5) modifies that a little - but very little). It also - when you dump this nonsense about 'attorneys consenting to treatments' - makes clearer the obvious conclusion that 'normal laymen, untrained in either medicine or law, must be capable of making acceptable best-interests decisions about the application or withholding of medical interventions'.'

I then moved on to something Baroness Finlay had implied in her introduction to the PDF - that 'there is ALWAYS a main family carer'. There might NOT be a MAIN carer - there might be several family carers who are all equally involved and equally important - and this imposition on families, of 'structure' is downright wrong. Fiona Godlee wrote about this, in a recent BMJ piece, which started with:

http://www.bmj.com/content/bmj/354/bmj.i5123.full.pdf

'It may not feel like it just now, but what we have is doctor centred care. Perhaps also institution, manager, and nurse centred care. What we don't yet have is patient centred care, despite this being obviously what healthcare should be. But things are slowly shifting in the right direction, and The BMJ aims to help keep up the momentum.'

This difference - that 'professionals work within 'structures' but that families work differently - is particularly important to accept, for end-of-life at home.

I had originally intended to include something about my ongoing discussions with David Oliver here, but I've decided to write a separate piece about that discussion.

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