That dying Sontaran in Dr Who

I stumbled across mention of an upcoming conference on Twitter yesterday, and I have just posted a tweet about it at:

https://twitter.com/MikeStone_EoL/status/862220316982030336

The conference, using the words of Samantha Halliday who is its 'contact point', is about 'what we can learn from other jurisdictions about how they regulate advance decisions'.

I exchanged e-mails with Samantha yesterday, and not for the first time, this issue 'popped up' in her e-mail to me:

'For example, Austria requires the individual to have a capacity assessment in order for the advance decision to be valid. That does increase the cost, but it avoids any suggestion at the implementation stage that the individual lacked capacity.'

The tweet I've mentioned above, is a short explanation of why I dislike this suggestion that a written ADRT 'must somehow prove the author was mentally capable when it was written': my position is that subsequent readers of the written ADRT must assume that the author was mentally capable, unless they are aware of some evidence to the contrary.

Basically, 'the doubt is legitimate - but requiring proof that the author of the ADRT was capacitous when it was written is unreasonable'.

I might have 'messed it up', because I had to seriously 'compress the argument', but I hope I pointed out in my tweet, that there are serious issues if you insist on proof of capacity 'with ADRTs': the issue hinges on the ongoing right of the author of a written ADRT to withdraw it at any time, provided the author's mental capacity has not been lost - in essence, we are on a road which would lead to 'people have to CONTINUOUSLY PROVE their ongoing mental capacity'.

Which strikes me as absurd - we should follow the approach of the MCA, which assumes capacity unless incapacity has been 'proven'.

I'm in serious danger of moving into a 'long and incoherent ramble' here, because this is both very 'complex' and also crucial to my 'differences with 'the system' and professionals' for end-of-life at home: so I'll try to limit my analysis here.

Basically, 'the system' is obsessed with 'records and documentation', it seems to often want 'unreasonable [and sometimes impossible] proofs', and the one I'm really wound-up by is 'the professionals seem determined to doubt the integrity of family carers'. The system also seems to think that 'organise a meeting' is the solution to most problems - my own limited experience of end-of-life at home, combined with a bit of thinking, convinces me that 'organising a meeting' is increasingly less useful, and increasingly inappropriate, the nearer the patient is to the actual death.

I often wonder, when I read things written by professionals in the context of end-of-life:

'Have any of these people, actually been the family carer while one of their own parents has died at home ?'

Because I have been, and what was important to me was:

1) to keep listening to my dying loved-one, and to follow his/her decisions;

2) to try and get doctors and nurses to provide the care/treatment that my loved-one wanted;

3) to stop doctors/nurses/paramedics from intervening in any way which my dying loved-one did not want.

This basically involves CONTINUOUSLY LISTENING TO THE PATIENT and doing what the patient wants (note: for the purposes of this piece, I am assuming a capacitous patient - if I were to introduce the 'how does this work if the patient isn't capacitous' issue, then the piece would be much, much longer!). It IS NOT ABOUT 'organising formal meetings at every 'twist and turn'': it is NOT ABOUT 'being led by a records trail'.

It is about 'being there with the patient, listening to the patient, and respecting the patient's decisions instead of imposing other people's decisions on the patient'.

For end-of-life at home, the only people who are usually there to listen are the family carers: I get REALLY annoyed when 'the professionals' effectively tell the family 'only we can listen - you cannot listen'.

There is another slightly different analysis which can be made about 'why records are kept' - see my tweet at:

https://twitter.com/MikeStone_EoL/status/859322244773949440

I'll close with a thought: why should I need to prove I'm mentally-capable when I write an Advance Decision, when I'm not required to prove my mental capacity when I turn up to vote in elections ?

Hi Mike
Sorry missed this when you first posted, have been a bit tied up with caring responsibilities. I totally agree with what you have written, and think you were very clear. However I don't think the need to deal and plan with end of life in real time, negates the purposes of ACP. In terms of thinking about the likely scenarios it does help think through what may and may not be likely responses of one's loved ones, or nearest and dearest. ACP can help you have some of those difficult conversations and thus make the whole end of life, or dying well, much easier on all concerned. Certainly I recently had a conversation with my Mum about what she might want to happen, should anything go wrong with her recent surgery, and we have over the years discussed what I would want, should anything happen whilst I am travelling in the car. It doesn't preclude real time decision making, but having the conversations at an earlier point makes it so much easier.
Liz

Thanks Liz,

I can understand your 'being tied up recently' with caring responsibilities.

I have absolutely no objection with anything that encourages 'the thinking ahead' - something a lot of us [including me] try to avoid because it forces us to 'look at a place we don't really want to visit'.

But there is definitely a tendency for the 'ACP' which is the result of that 'thinking ahead', if the thinking ahead has happened, to be seen as a sort of 'fixed objective' by some HCPs - it should never be 'a fixed objective', it should only ever be 'information' (writing a little 'loosely' here, for brevity).

Best wishes to both you and your mum, Mike