I believe that clinicians are downplaying, and also misrepresenting, the role and agency of family-carers during end-of-life.
I have been unhappy for over a decade with what doctors and their organisations tell family-carers and relatives, as to what the 'role' of these layfolk is during end-of-life: especially end-of-life when the patient/loved-one is at home.
I have tried a new approach in the attached PDF, which is to present 'bite-sized' pieces of information/argument. That means that while I do develop a theme during the piece, it is also possible to dip-in-and-out and to ponder things which I've written without trying to follow the piece from beginning-to-end.
The PDF has got page numbers, and as 'tasters' if anyone is interested then I would suggest taking a quick glance at the following:
the Unspoken Truth on page 4;
the [Surely an] Unspoken Truth on page 5;
the Surprisingly Little Understood on page 8;
and the Insufficiently Spoken Truth on p9.
As usual I welcome any feedback, including in this case, whether other people agree or disagree with my descriptions of things as 'unspoken truth', 'surprisingly little understood', etc.
Associated files and links:
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CPR Secrets Untruths and Unspoken Truths by Mike Stone
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A doctor doesn't seem to have fully-picked-up-on my position about 'the tricky interface' between Informed Consent and Best Interests for the situation of a cardiopulmonary arrest, probably because hardly anyone except for me uses one of my basic 'ideas', which is:
A proper MCA Best Interests decision has to involve 'significant thinking at the time' - as judges do during court cases.
In the example of the patient arresting as the doctor leaves the patient's bedside, which is at the bottom of page 8 in the PDF you can download from the first post in this thread, WHATEVER YOU CALL THE 'LEGAL CONCEPT' WHICH THE DOCTOR IS APPLYING, it is clear that the doctor should not attempt CPR - and it is clear that the doctor doesn't have any thinking to do to understand that. The patient hasn't made a written ADRT refusing CPR, and the MCA seems to say that the doctor therefore has a best-interests determination to make: BUT in my opinion the situation is really one of Patient Autonomy. As I've argued in past pieces, I think the requirement for an ADRT refusing a life-sustaining treatment to be written, implicitly assumes that there is a 'time interval' between the refusal and the arrest. In that 'leaving the bedside situation' then even if you call it best interests, the doctor already knows what the determination will be [because nothing can change between the conversation with the patient and the patient's arrest - unlike a patient who told a GP last month that he wouldn't want CPR, and the patient collapsing when he next walks into the GPs Surgery a month later].
I think I went through some of this stuff in my (be warned - long!) PDF at:
https://www.dignityincare.org.uk/Discuss-and-debate/download/317/
Also in that PDF, are two Twitter Polls which I carried out, which SIMPLY DO NOT align well with what the BMA, etc, tell us should happen during end-of-life and in the context of the interactions between clinicians and relatives/family-carers.
https://twitter.com/MikeStone2_EoL/status/931819196207509504
I asked this question in my poll, and offered 3 answers: 60 people voted, and
I show the results:
A mentally-capable adult is 'dying' ['end-of-life' = 'sometime within predicted
final year of life'] at home. Who should the family-carers living with their
dying loved-one be taking instructions from? Please retweet - an analysis
of answers would be 'interesting'.
From the dying patient 92%
From the GP and nurses 2%
From nobody 6%
Total votes cast 60
In an earlier poll on Twitter, I had asked a related question:
https://twitter.com/MikeStone2_EoL/status/919195401898680321
An 82 years old man is diagnosed as terminal. He and his 79 years old wife
‘invite clinicians to help while he dies’. Does that invitation of itself, imply
that if he loses the ability to make his own decisions, he wants the
clinicians, and not his wife, to make them?
Yes it does 8%
No it does not 92%
Total votes cast 79
Sorry about the de-formatting of the two Twitter Polls - they were correct when I clicked 'post'. Anyway, you can still decipher them.