Mike's Cheeky Blog: Susanne Stevens, and interferring professionals
There is someone called Susanne Stevens, who often comments on the same BMJ articles as I do - we both seem to write from 'the family-carer perspective'. She has recently commented at:
http://www.bmj.com/content/354/bmj.i4214/rr-0
Susanne started by pointing out that even written Advance Decisions often fail to be effective, when patients are in their own homes - this is a point I endlessly bang on about, and I made that point in a response to Susanne's comment at:
http://www.bmj.com/content/354/bmj.i4214/rr-1
Susanne ended her comment with the sentence:
'The experience of dealing with professionals who do not understand their limits to involvement can massively increase the pain and distress and totally distort the experience of being together to 'see a loved one out' at the end'
This - if extended to include an analysis of 'who should be making which decisions' - is in fact also the theme of my piece at:
It makes me think back to my mother's death, and the total failure to see eye-to-eye with the 999 Services, who became involved some time after my mum had died. They became involved, because the GP had taken a day off and gone to Europe for a long-weekend - the GP's Surgery told me to call 999. But then I had the problem of 999 'wanting to find things within the written notes' which the GP had not placed there - combined with an apparent lack of understanding, of exactly how complicated and confused end-of-life at home can very easily become. Listening to me, and assuming that I was telling the truth, did NOT seem to be the approach of the 999 Services.
The problems, affected me, after my mum was definitely dead. But, I was aware, and so was the GP, that my mother was determined to die at home - I think she was determined to die at home, partly because my dad had died at home, and partly because she was never at all keen on being 'hospitalised/mediclaised'.
But - although it isn't easy to see how this could have happened, although it cannot be entirely ruled out - although I was faced with a 999 paramedic who very clearly thought he was supposed to make the decisions, and that I wasn't supposed to make decisions, it is equally obvious to me that if he had been involved when my mother wasn't 'obviously very dead', he would have attempted cardiopulmonary resuscitation. Which would have INFURIATED me, because I knew my mum 'wanted to be left alone to die'. If CPR had 'worked', I'm equally sure that he would have whisked her off to hospital - which would have INFURIATED ME EVEN MORE INTENSELY because my mum had never actively sought any medical intervention while she was dying, and she had been DETERMINED to die at home.
If you are involved with a dying loved-one, and you do your best to let them die on their own terms for weeks or months, then THIS IS NOT TRIVIAL: it would have HUGELY ANGERED ME if my mum had ended up not being allowed to die peacefully at home, as I knew she wanted. Weeks or months of 'supporting your dying loved-one' can be totally 'trashed' by the action of a nurse or paramedic, and that is a very bad thing indeed, when it happens.
Susanne might have been writing about a different experience, but I think 'she was coming from the same place' when she wrote:
'The experience of dealing with professionals who do not understand their limits to involvement can massively increase the pain and distress and totally distort the experience of being together to 'see a loved one out' at the end'
It seems I can't spell interfering today - no idea why not: makes me worry about my brain, at my reasonably advanced age !
I feel a strong 'urge or need' to put this somewhere - I've decided to put it here.
Susanne wrote (see above):
'The experience of dealing with professionals who do not understand their limits to involvement ...'
I keep coming across clinically-authored material, which states that decisions around cardiopulmonary resuscitation are 'clinical decisions' - this is nonsense.
The situation is the following - this simply has to be correct, on simple logical grounds.
1) How CPR is administered - 'the technique' - IS a 'clinical decision'. And predictions of the likely outcomes of attempted CPR, require clinical expertise (although I dislike describing these predictions 'as decisions'). You might ponder how this applies to CPR, when CPR is currently taught to laymen for use as 'first aid' [and if you concluded that the fact that non-clinicians can attempt CPR 'seriously blurs the often-stressed distinction between clinicians and family carers', then in my view you would be right];
2) Whether or not potentially successful CPR should be attempted, is NOT 'a clinical decision'. It is either the patient's decision ('informed consent') or a section-4 MCA best-interests decision (which is not 'a clinical decision' - best-interests decision-making is an incredibly complex concept, which usually requires an understanding of clinical prognoses {which must then be described in terms of 'how the prognosis would be 'experienced by the patient'} and also of what could be termed 'the patient's individuality' [and I consider that the process of making a best-interests decision equates to applying the 'patient's individuality' AFTER the clinical factors are known: not everyone seems to agree with me about this, but I've yet to see a clear elaboration of what a decision-maker actually does, as an alternative. It can go - I'm happy to accept this - 'apply the patient's individuality to the clinical and other factors, and then also add in 'something else' (where that 'something else' is very tricky indeed to describe): but it cannot usefully be 'understand the patient's individuality and then apply that to the clinical factors']).
I am aware that 2, after the first sentence, 'might not seem very clear'. If you want more clarity, I would point you at my pieces elsewhere - for example my piece, and the file you can download, at:
And if you want to see how best-interests differs from 'patient autonomy', perhaps my piece here will help: