Attached is a PDF containing some of my thoughts about End-of-Life: a 'PDF book/booklet'
I was exchanging 'banter' with a Palliative Care Consultant, a couple of weeks ago. We were discussing some end-of-life 'issue' and he sent 'you should write a book' - I sent back 'if you write a book, people might read it - it I write I book, it will not be read 'because I'm just a layman''.
However, every so often, I tend to create a longish PDF which contains many of the URLs to pieces I have written, or which I often point at - usually to make it easier for me to find stuff, but I decided to cobble one together as 'Mike's Little Book of Thoughts about End-of-Life'. I have attached it. I hope the hyperlinks all work correctly - I write at home, when I am offline: then when I am online in my local library, the software I use at home isn't on the library computers - I have tried to check the links, and I hope they all work, but some might not. There is quite a lot in the piece, even if you read it 'as a stand-alone piece without following any of the links'.
As usual - I'm not sure if this will 'be of any help' or not. If people read it, I hope it might 'provoke a bit of thinking' about contemporary EoL behaviour and beliefs.
Associated files and links:
My Little Book of EoL Thoughts v1 by Mike Stone
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I have noticed, and attempted to correct, a few minor 'typos' in v1 and I attach a version which I hope contains fewer typos (v2).
I have also added a few extra pages in 'Mike’s Little Book of Thoughts about End-of-Life v2' and one of the extra bits is 'Tina's Story' which starts on page 56. I was thinking about Tina's Story yesterday evening. I use it, to illustrate the problems which arise because despite the best-will of everyone involved, sometimes people simply 'cannot know, or be sure of, various things'. I am puzzled by something - and I was sent the e-mails describing this by Tina some years ago, so perhaps at the time I understood this, but have forgotten the explanation: Tina did say in her e-mails to me that she hadn't realised her mum 'had been put on the Liverpool Care Pathway' - in the context of what Tina told me, I'm not sure why that 'was significant'. It is possible - because we were talking to each other about wider EoL issues, I think soon after the Neuberger review of the LCP had been published, including '... and relatives often were not told of patients being 'put on' the LCP'' - that Tina included that piece of information because we had talked about the LCP (it doesn't seem to matter much, whether or not Tina knew if her mum 'was on the LCP' because Tina also made it clear that she understood the option her mum had chosen 'meant she would die in the hospital').
Associated files and links:
My Little Book of EoL Thoughts by Mike Stone v2
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I wrote this piece over the end-of-year, partly prompted by some 'guidance about clinically-assisted nutrition and hydration' for laymen from the BMA/RCP, and partly because I've been reading Kathryn Mannix's book 'with the end in mind'. I had originally intended to write 2 separate pieces, but something in Kathryn's book fits in with an issue raised by the BMA/RCP guidance - the intricacy of trying to explain 'why the MCA's Best Interests is NOT 'Substituted Judgement'. So, I've included my comments about Kathryn's book, in this piece.
The internal title of the piece, is 'Who Decides What’s Best when The End is Coming?' which is the question I analyse in the PDF (and - regular readers of my stuff, especially of https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/An-issue-with-ReSPECT-which-I-will-be-pointing-out-to-the-Public-Guardian/960/ - will not be surprised to be told that I disagree with the BMA, etc, about the answer to that question) and I hope I've made it 'readable'.
I've tried to check the URLs, and I think they are all working.
I wasn't sure whether to put this in my thread of PDFs at https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/Mike-Stones-PDFs-I-hope-to-post-various-PDFs-about-EoLMCACPR-in-this-thread/944/ or whether to add it to this 'My Book ...' thread - it could have fitted in either, but I've decided to put it here.
Associated files and links:
The connection between MCA Best Interests and Substituted Judgement
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I have just spotted that I failed to include a hyperlink in my PDF (previous post) explaining 'why I now cry so easily' (page 9 of the PDF: 'I am often made tearful these days, by ‘things around dying’ - before my mother’s death, I would not have cried in the way that I often do now. The reason I cry, is quite complex in my opinion, and I tried to explain that in my piece here.').
The piece where I tried to explain why I 'now cry absurdly easily' [for things to do with dying and death] is at:
PS I wrote the PDF at home, and I do not have internet access at home - so I have to insert the URLs at a later stage, when I'm in a library and online, and that means I sometimes miss things.
I also spotted another missing hyperlink in 'The connection between MCA Best Interests and Substituted Judgement' to my 'Father and Son' scenario/survey - it is at https://www.dignityincare.org.uk/Discuss-and-debate/download/298/
I also noticed a couple of minor typos - I'm considering adding the missing hyperlinks, and correcting the typos, an a 'version 2' and posting that here (it rather depends on whether I can find the file I converted to PDF - if I've lost the file, I'm definitely not retyping the whole thing!).
I have inserted the two missing hyperlinks, and also at the end of this version I point to some tweets posted by Kathryn Mannix after she had read my comments on her book in the original version of the PDF. I also point to a tweet I made, in response to Kathryn's tweets - a somewhat 'nerdy' tweet, which asks 'so where, if not on Twitter, are the issues around decision-making during end-of-life to be discussed between patients, clinicians and relatives?'.
Associated files and links:
The connection between Best Interests and Substituted Judgement version 2
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Mike. I follow this site with true love and affection for the commitment to Dignity in practice and very rarely post. I have read your EOL thoughts book and passed it over to some of my colleagues as I had found it thought provoking. It has opened discussions and revisions of our own end of life packages and how we complete our care plans.
I felt it necessary to say thank you for reawakening some much needed discussions in the care sector.
All end of life caused by illness should be treated by palative care
nursing staff as we in sheltered housing and care homes can provide the
medication to ease end of life all we can do is care!! And yes as a carer
we go above and beyond to help residents and family
Hello all,please view at 9-00pm tonight on bbc2 programme (we need to talk about death).All of us need to have the conversation regarding what and how we want to be treated at end of life .
Thank you Anita, very kind of you to write that.
Hi Neil - I watched the Horizon episode last night, and will be commenting on it on Twitter: I'll make the same comment here.
Horizon was very good. 'Nellie the Elephant' - wonderful!
One quibble (perhaps more than a quibble): doctors seemed quite keen to say 'quantity of life' - WHY? They meant 'length of life'. I can't believe that patients often ask 'would that affect my quantity of life' as opposed to asking 'would that affect the length of my life'. So why weren't the doctors just saying 'length of life' - I can see no excuse for using 'quantity of life' instead. 'Quality of life' is fine - 'how would that affect my quality of life' IS what 'normal people' would say, I think.
As it happens, Mark Taubert is one of the people I discuss EoL/MCA/CPR with.
There was also Joan Bakewell's broadcast on BBC Radio 4 at 8 pm yesterday: the series has the same name 'We Need to Talk About Death' as the Horizon episode, and yesterday's broadcast was about why some deaths are referred to the Coroner, even if the person who died was very old or had serious health problems. It raised an issue, without properly analysing or solving it - I would point people at my pieces:
Watched Horizon programme (we need to talk about death) people need to be more proactive in their decision making about end of life care .I did a 4 day palliative training course at st christophers and have worked in palliative care for Marie Currie, social services ,and private company and can vouch for the positives surrounding support in a community setting.
But its people's choices and wishes at the end that must be paramount .
Quite right it is a people’s choice and my mothers and grandmothers was to stay at home with care of family and support of a agency. I’m not saying that juggling my work and family has been easy or without problems but it has its rewards in precious memories and the reassurance of knowing they are happy and will pass where they wanted to be . That is the biggest honour I will have in this life .
I’m so glad my family is open in the discussion, some say it’s morbid ... I find it enlightening.
I am going to watch this on catch up thank you i think everyone should talk about end of life so we can all have a choice in care
There is an obvious paradox, within section 4 of the Mental Capacity Act, which I am about to point out. The most obvious 'wider" solution (not because it would resolve the paradox, but because it would be supportive of the MCA's 'ethos') would be for the Act to have said 'a person making a determination' in section 4(1) [instead of what 4(1) actually says: the person making the dermination].
This is the paradox. Section 4 EXPLAINS HOW a best-interests decision must be made, in order to comply with the Act and to thereby benefit from the legal protection provided by the Act. Section 4(6), deciphering the 'legalise', explains one aspect ('the patient's individuality' in short) of what you need to understand in order to defensibly make a best-interests determination. And section 4(7), lists people who a person making a best-interests determination should consult while making ('arriving at' might be better than making) a best-interests determination. Here is the paradox: section 4(7) says the consultation is about 'what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6)'.
How could I, as a person being consulted, give my opinion about 'what would be in the person's best interests' unless I had ALREADY FORMED an opinion about what would be in the person's best interests? And HOW, could I have reached a conclusion about the person's best interests, when 'the person making the best-interests determination' had not yet arrived at a conclusion as to what would be in the person's best interests?
Increasingly what clinicians are writing and guidance is stating, is that the MCA describes 'a collaborative process/approach' for best-interests 'decision-making' (I have deliberately switched from 'determination' to 'decision' - in fact, legally most people, including doctors, are making determinations and not decisions, but I'm fairly sure most doctors believe section 4 describes 'decision making'). We can resolve the chronological paradox - how can people being consulted have opinions about best interests BEFORE the person making the determination has formed an opinion? - by discarding the concept of one person 'doing the consulting' and instead using the concept of DISCUSSION. Get the people mentioned in 4(7) together in a room, discuss section 4 and 4(6), and then accept that probably SEVERAL people - relatives, clinicians, friends - can [after the discussion] each claim to have formed their own legally-defensible best-interests decisions. And ideally - everyone is in agreement about what would be in the person's best interests.
That - everyone get their heads together, everyone contribute what they can, and see if everyone who can then reasonably express a position on best interests is in agreement - is 'the collaborative approach'. And, unless a welfare attorney or court deputy is involved, then 'the collaborative approach' is that IF everyone agrees, there is no claim made about there having been 'a' decision maker (so it isn't 'the doctor decided and nobody disagreed' - it is 'the decision was made and agreed by everyone').
It COULD be done differently. 'The person making the best-interests determination' COULD adopt a 'possessive attitude' and instead of 'sharing' information, argue 'only I need to know - I'm making the decision'. That ISN'T 'very collaborative', and I would not approve of that attitude: but, it doesn't clearly conflict with section 4. If there is a suitably-empowered welfare attorney or court deputy, then the attorney or deputy for practical purposes is the person making the best-interests determination (and in this case, it is 'a decision' in legal terms). An attorney COULD consult people in isolation: first asking clinicians about treatment options and prognoses, and then afterwards asking family and friends about section 4(6) without any clinicians being present. Which has always posed an obvious question, in the following context. The guidance for doctors, quite correctly tells doctors to raise concerns if the doctors believe an attorney has expressed a decision which is not in the patient's best interests (and if family or friends believe a doctor intends to do something which is not in the patient's best interests, then the relative or friend should raise concerns). But, if the attorney has done what I have just described - excluded the doctors from the 'section 4(6) discussions' with the people who understand the patient as an individual - then HOW can the doctors form an opinion about what is in the patient's best interests?
It is also what I can only describe as 'confrontational' in view of section 4(6) and the 'Briggs' ruling, for doctors to claim that they make, or even 'verify', best-interests decisions about loved-ones: an understanding of the loved-one/patient as an individual is the crucial aspect (see footnote) of MCA best-interests decision-making, and it is the close family and close friends who understand that. Which is not to deny that anyone who might need to rely on the legal protections of the MCA, needs to be able to claim to have 'satisfied' MCA section 4(9) personally (if we set aside the implications of section 42 within the ranks of professionals).
It is more collaborative, and less confrontational, to be told 'WE need to decide' than to be told 'you need to help ME decide'.
FOOTNOTE: It is of course also necessary to understand what the MCA requires of a best-interests decision maker. In so far as anyone really 'understands' best-interests decision-making, there is no reason to doubt that most relatives and family-carers can understand it with some effort and perhaps a bit of help. It cannot logically be true (because the Act allows for laymen to be appointed as welfare attorneys) that an adequate understanding of best interests is beyond typical layfolk.
I might add something further on this in a subsequent post - here, I will point out that I myself have never seen this paradox pointed out by anyone else, but I imagine other people must have spotted it.