Attached is a PDF containing some of my thoughts about End-of-Life: a 'PDF book/booklet'

mike stone 03/04/18 Dignity Champions forum

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:

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mike stone 05/04/18

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').


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mike stone 02/01/19

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.

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mike stone 04/01/19

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:

https://www.dignityincare.org.uk/Discuss-and-debate/download/299/

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.


mike stone 07/01/19

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!).

mike stone 08/01/19

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?'.

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Anita Nelson 23/01/19

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.

keith carr 23/01/19

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

Neil Purcell 23/01/19

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 .

mike stone 24/01/19

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:

https://www.dignityincare.org.uk/Discuss-and-debate/download/275/

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/Markers-and-Timelines-for-End-of-Life-Reconsidered-an-attempt-to-bring-order-to-chaos/785/

Neil Purcell 24/01/19

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 .

chianta williams 24/01/19

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.

Mandie Brown 24/01/19

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