Susanne Stevens 'should be required reading' - and I remain deeply angry that 'the system' is still 'covering its own back' during end-of-life.
I was discussing something on Twitter recently - I'll start with the series of tweets, which I hope can be found at:
https://twitter.com/DrMarkTaubert/status/856843937130176513
I had found something in a video on the 'TalkCPR' website:
I tweeted: a doctor says 'The DNACPR form essentially is an instruction from the patient' - no, that's an ADRT forbiding CPR.
Dr Mark Taubert tweeted: DNACPR when discussed with pt is a letter from the clinician 'To Whom It May Concern', so it is an indirect instruction from the pt.
I tweeted: Indeed - why not have a direct instruction, signed by the patient and witnessed by both clinicians and family carers instead?
And Mark came back with: We do that too. Just not that common. Honestly, most patients tell me "Can you do all that stuff pls?" Often too exhausted to fill in ADRTs
Well, the point is this: patients who are dying at home, are just as 'exhausted' as Mark's hospital patients - don't you think that sometimes patients at home will 'explain something to a family carer' and then say 'I can't deal with this - I've told you - can you do 'the stuff' for me'.
Susanne Stevens - who writes about end-of-life with a brilliance that humbles me - has written a piece which EVERYONE should read, at:
http://www.bmj.com/content/354/bmj.i5195/rr-14
Towards the end of her piece, Susanne writes:
'The bottom line should always be though that their (the patient's) decisions should be respected regarding admission to hospital and end of life decisions made knowingly and which have been conveyed to relatives and friends, who are the people who have to live with the anguish if others interfere at a time of such great distress.'
I almost always, agree with the pieces that Susanne Stevens writes - but while we both want 'systemic behaviour' to respect the 'listening and understanding' role of 'family carers/live-with relatives', it is very clear indeed that something fundamentally different (an emphasis on decision-making 'during emergencies' being led by 'what is in the records' instead of by 'asking the relatives who called 999') is still being 'promoted' by healthcare professionals:
Dr Mark Taubert has read the earlier piece, and he has tweeted:
https://twitter.com/DrMarkTaubert/status/864790150206947328
'Agree with it Mike.I just get worried about safeguards for vulnerable pts with 'bad' family members.Perhaps an outdated view, though?'
Well, of course relatives and family carers MIGHT BE 'bad'.
Do Harold Shipman, Winterbourne View, Hillsborough and Mid Staffs ring any bells?
The professionals MIGHT BE 'bad' as well.
Mark Taubert also tweeted:
https://twitter.com/DrMarkTaubert/status/864794540938584064
'Yes.At present,decision making 2strongly scewed toward HCP,needs to move to pt/proxy.But how to educate,when it is not daily bread&butter?'
This 'it [end-of-life - especially if the patient is dying at home] is not daily bread and butter - so how do we educate people ?' is a really good question.
All I can say, is that the family carers of the dying person are thrown in to the situation, and are essentially forced to embark on an 'informal learning crash-course' re EoL at home. And that even the 999 Services, who you might think would 'understand EoL at home', seem to understand it less than I would expect: the fundamental problem, being that the communication (and let us be clear - people definitely avoid 'talking about the actual death itself) between patient, GP, family carers or relatives, and district nurses, is often far less structured, far less 'complete', far less 'formalised', and much more 'fragmented' than contemporary 'EoL at home protocols' ASSUME IS THE CASE.
There is a particular issue, with the police and their possible involvement in 'confused natural EoL home deaths' because the police are deliberately kept away from 'expected EoL home death' so their 'experience' is of truly 'sudden' deaths, and they apply the 'wrong type of experience' 'when they think'.
Returning to 'bad behaviour'.
There will clearly be some nefarious relatives and family carers. But the bigger danger, in my view, is that because many people simply do not understand how potentially confusing EoL at home is, that 'confusion and misunderstanding is conflated with bad behaviour' - basically 'it was probably nothing 'nefarious' - it was far more likely to be 'a cock-up''.
And whatever anyone thinks, I do want checks for bad behaviour (whoever is behaving badly) - I simply want a proportionate BALANCE between looking for bad behaviour, and damaging just-bereaved family carers by stressing 'looking for bad behaviour' and not considering how damaging 'effectively accusing innocent relatives just after a death' is for their mental health.
Moving on again.
I'm not sure if I've got this right - Twitter still very new to me - but to try and 'get some thrashing out' of some of my issues, I'm planning to create 'a hashtag'.
#indirectEoLdecision
My arguments will hinge on 'we should start by applying the MCA correctly' (clinicians almost invariably start by thinking about current and future clinical situations: I start by asking 'what does my dad want to happen, in the clinical and wider-life situation he finds himself in; and the MCA provides the 'answer' to how we must examine my question [the clinical things, become an 'input' and not an 'output' if you start from the MCA]).
To begin my #indirectEoLdecision 'thinking' - oddly, not on Twitter but here - I'll start with a 'fundamental 'rule''.
This is hugely helpful, as 'the rule to sort out what is, and what is not, a 'best-interests decision':
If the patient is not making the decision (so, if the patient is mentally incapable and we are involved in best-interests decision-making) then if a decision can legitimately be arrived at without an understanding of 'the patient as an individual - an understanding of 'how the patient thinks, and the patient's 'take on life'' - that decision is NOT 'a genuine best-interests decision'.
Now, that is in my opinion 100% 'correct' - but note, I am NOT stating that all decisions made during incapacity which fail my test are not legally defensible: I'm simply saying, that those decisions should NOT be thought of 'as being 'best-interests' decisions'.
Doubtless I'll be back to this thread - Twitter has serious limitations, if the analysis is intricate!