The PDF contains my 'Anne, David and Dr Jones' scenario - it poses the question 'what is the meaning of 'shared decision-making' for EoL at home?'
I am posting this now - I created the piece yesterday evening - because as it happens this morning Tom Heywood has tweeted to me https://twitter.com/deafT/status/872153374376042501 about 'shared decision making'. Tom tweeted:
'Shared decision making is about understanding professional needs, scope and capabilities. Communication enhances the decision.'
I want to point Tom - and other Twitter users - at the PDF, with the question 'how does 'shared decision-making' work, then, in 'Anne, David and Dr Jones' ?
This 'shared decision-making' is too vague a term: who can legitimately make a decision, is the question we need to be clear about - we should be thinking/analysing/describing in terms of decision-makers and decision-making authority, as I keep pointing out.
Associated files and links:
SEPARATIONS etc and my Anne, David and Dr Jones scenario
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It can be argued that my scenario isn't 'during EoL' if we consider EoL to mean 'the final year of life' - although dementia is now usually described as a terminal illness.
But, I set my question in a 'dementia [and 'stable']' situation, because the closer you get to the death when patients are at home, the more rapidly decisions must sometimes be made: the principles of the decision-making are unaltered (in this case the question of 'can we know whether there is a best decision, and can it be proved that either David or Dr Jones cannot defensibly make a best-interests decision?) but by using dementia, I have excluded 'urgency' as a factor in decision making.
Even if we add-in 'urgency of decision-making', it must now be accepted (see for example http://www.bmj.com/content/356/bmj.j876/rr-7 and the new 'ReSPECT' form which is intended to guide decision-making during 'emergencies') by senior clinicians that 'the appeal to necessity' during 'a clinical emergency' is not as satisfactory as making 'an informed and MCA-complaint decision' during an emergency: one of the few reasons why I actually LIKE 'ReSPECT'! I do NOT like the form, nor the unsatisfactory emphasis on 'clinical control of decision-making' - but, the very existence of the ReSPECT form, is only possible if its authors have conceded that 'an appeal to necessity' is very much 'a last resort'.
As well as a disturbing and unsatisfactory promotion of 'advance statements' which I intensely dislike - see
there are also people promoting 'mediation' as a solution to conflicts within healthcare. I have no objection to at least some aspects of mediation: if mediation succeeds, and avoids the possible alternative of a court case, then that looks to be a good outcome.
However, 'mediation' isn't a possibility for many of the 'conflicts' which can arise during end-of-life care, and which I often write about. One supporter of mediation is Dr Chris Danbury, and recently I asked him how 'mediation' could apply to the conflict within 'Anne, David and Dr Jones' [and how it obviously cannot apply to the conflicts between family carers and 999 paramedics which I often write about] in my tweet at:
Dr Danbury posted 3 linked tweets in reply, the first being at:
I take it - although the tweets are not entirely 'transparent' as an answer to my actual questions - that Chris isn't claiming that mediation would be a solution to 'Anne, David and Dr Jones', and Chris's tweets were:
1/ Twitter isn't able to cope with a proper analysis of the individual cases you raise. However, international data suggests that 90% of participants report benefit from the process of mediation. In my own practice over 80% of disputes settle without recourse to litigation.
2/ Mediation is not a panacea. It is one of a range of techniques that can be used to settle disputes between clinicians and patients (or families). It is far less confrontational than litigation and is much less likely to damage relationships.
3/ When the dust starts to settle after a dispute has been resolved, the people left usually need to action whatever decision has been reached. That's much easier if those people have come to an agreement on what that decision should be rather than have had it forced on them.
The third of those tweets, is on the theme [an obvious assertion] of 'it is better when people agree', and there is a variation of 'Anne, David and Dr Jones' which raises an interesting question about 'NHS Process even if the people 'on the inside' 'have agreed''. I'm not certain, but there might be a connection between what I am about to analyse, and a tweet by Dr Mark Taubert:
This is the twist. Suppose that we change the situation in 'Anne, David and Dr Jones' to one in which there isn't agreement as to whether or not Anne is mentally-capable with respect to 'should she take the tablet'. And, remove the disagreement between Dr Jones and David - now, Dr Jones wants to prescribe the tablet, and David is happy to try and arrange that Anne takes the tablet. And, also remove the 'Anne doesn't like taking tablets' issue: instead, change that to 'when the tablet is discussed with Anne, she wants to take the tablet'.
A common-sense approach to that, would be 'if Anne is capacitous, it is her decision and she wants to take the tablet'. If Anne is not capacitous, then both David and Dr Jones think it is in Anne's best interests for her to take the tablet'. So - looked at 'using common sense' - there appears to NOT be a problem: Dr Jones prescribes the tablet, and David does his best to see that Anne takes the tablet.
But - HOW DOES IT WORK IN TERMS OF 'NHS PROTOCOL'?
We have NOT established, whether or not Anne is capacitous for this decision: does 'protocol' REQUIRE that capacity or incapacity is 'established'?
And we have NOT established 'who made the decision' - in my original scenario, I had two people making different decisions with no obvious way of resolving the conflict: in this modified version, I have an agreed course of action but it is impossible to claim that we have established who is the decision-maker [although, we clearly CANNOT assert 'all three of them' because the MCA makes that impossible].
So, HOW WOULD NHS protocol handle that situation: what would be recorded, and is the 'common-sense solution' even 'acceptable' within the constraints of 'NHS process'?
Dr Kathryn Mannix (who is the author of a much-praised recent book 'With the end in mind') recently tweeted to the effect that during discussions of 'best interests', it is necessary to understand 'who the best-interests decision-maker will be'
Agree: but in the process, everyone needs to be aware of who IS the decision-maker. That's how teamwork works. That's why medics are attempting to interpret the Act into practical action. They aren't trying to subvert the law, just action it. Those who understand it, that is...
The professionals often write that - but when I read the MCA, I can't find anything to suggest that such identification 'of the decision maker' is logically possible. Professionals also 'struggle in practice with' other aspects of the MCA: notably the fact that mental capacity can fluctuate, and that best-interests decisions should logically ideally be made at the time that events call for the decision to be acted on.
I posted some tweets outlining the issues around this 'can a decision maker be identified for best-interests' a couple of days ago at:
But I have also gone through the issues rather more clearly in the PDF which I have just written and which I attach here - now I can return to the debate on Twitter, and point to this PDF.
We do need to thrash out this sort of issue!
The 'Anne, David and Dr Jones' scenario is an examination of the 'who is the decision maker for best interests?' issue, and my attached PDF uses a scenario when more than one person is present at a cardiopulmonary arrest to examine the same question.
It is also worth thinking about the court rulings I have collated at:
Associated files and links:
I have cobbled together this piece, in response to something Lucy Series [who writes about the Mental Capacity Act and similar topics] tweeted last week. I think that my own 'family-carer during end-of-life at home' perspective, is probably very different from the type of situation Lucy has been thinking about:
Yes - agree - very different indeed! Will try to respond to your comments at some point, but frantically trying to finish something today. Thanks v much for engaging on this - v interesting
Lucy has her own blog, and if she 'writes a response' then if she posts it I'll put up the link to it (provided Lucy sends me the link), or if she prefers I'm happy to post a 'reply' by Lucy here, in this thread. I definitely agree with Lucy - we need to understand how 'perspective and situation' influences 'thinking about the MCA'.
Associated files and links:
Inspired by something Lucy series tweeted
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