Mike’s Cheeky Blog: the cost of reading.

mike stone 22/10/18 Dignity Champions forum

I've been thinking about this – in the context of end-of-life, and with 'cost' meaning monetary cost: how much you have to pay, to read things relevant to dying. There is always a time cost – you can't read anything unless you spend some time doing that.

And the 'reading' is also within the context of need for much more debate around 'dying' – while I think that everyone should be able to contribute to that debate, it usually helps if you are reasonably well-informed.

Often, I'll find a paper which I would quite like to take a look at, only to discover it is 'behind a pay-wall' – a lot of the online articles in the British Medical Journal can only be read beyond their introductions, by either subscribing to the BMJ or else by paying for the paper on a one-off basis. Many of the papers in academic journals, which are relevant to EoL, are behind such pay-walls – typically an individual paper might cost about £25 to access.

Some papers will be open access: the papers on the BMJ are a mixture, and I recently tweeted the URL to an open-access BMJ paper which was written by a woman who has Down's syndrome – a paper, I would point out, that is a better and more necessary 'read' than most of the BMJ's pay-walled papers.

The Royal College of Physicians has just released a lengthy, and very good, report about the difficulties of talking about dying – if you can get online and find it, it can be downloaded free-of-charge. The RCP report recommends 2 books which it suggests clinicians should consider reading as part of their commitment to professional development in end of life care. Both of the books, are stocked by Coventry's library service – but even if you bought your own copy, I imagine the paperback version would cost no more than that £25 to download a single, much shorter, paper from many academic journals.

I put my own writing about EoL/MCA/CPR issues online, and it is free to download: it isn't 'peer-reviewed' so it could be argued it also isn't worth reading – I don't think the RCP report, or I suspect those 2 books, was peer-reviewed either.

Now, clearly journals, etc, incur costs which must be covered somehow. I have no conceptual problem, if a journal devoted to a specialist interest has to be purchased: many people have no particular interest in Ship Design for example, so needing to pay to read about it, isn't for me problematic. But WE WILL ALL DIE – and for several years there has been support for 'a national conversation about dying': it doesn't sit easily with me, that quite a lot of the 'information' which would help people to contribute to that debate, can only be looked at if you pay to do so.

As it happens, I was exchanging some Direct Messages on Twitter recently, about end-of-life, with a doctor. One direct message from the doctor, was a fantastically concise but comprehensive description of many of the problems which currently afflict end-of-life: the entire series of messages which we exchanged would probably amount to only a page or thereabouts, and if published would be 'more informative about end-of-life and its issues' than many of the papers in academic journals are. I'll see if the doctor is willing to allow me to publish the direct messages, and if the answer is yes, I'll put them in this DiC thread – but my instinct, is that the answer will be 'no'.

Which brings me to my closing point. However many papers and policies I read as part of my investigations into various end-of-life issues, the e-mails and Twitter Direct Messages which I exchange with doctors, nurses and social workers, are often much more 'informative': but, that is 'informative 'in private'' – and the debate about end-of-life, surely has to be 'open, in public, and preferably between informed people'.

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mike stone 30/10/18

I mentioned in my previous post, some Twitter direct messages between a doctor and me, and in particular one message from the doctor which I consider to be a wonderful description of the complexity, and problems, of end-of-life behaviour. The doctor has given me permission to publish the series of message we exchanged, and they are in the PDF.

Associated files and links:

Carol Roughley 30/10/18

Hi Mike

Commencing my MSc Palliative Care at Kings College will no doubt expose me to the journal articles you are referring to, so if there is a particular article that interested you please share!

mike stone 31/10/18

Hi Carol,

It isn't particular articles - I've been bothered about behaviour during end-of-life at home ever since my mum's death about 10 years ago

https://www.dignityincare.org.uk/Discuss-and-debate/download/315/

And when I stumble across papers with 'interesting titles' I follow the links, and often the paper will turn out to be 'subscription' [which means I won't be reading it].

If you doing an MSc in Palliative Care, I have a question for you [feel free to not answer]. Dr Kathryn Mannix has written a book about how people die, based on her experience. The first chapter of the book is online as a PDF (free) at:

https://www.dyingmatters.org/sites/default/files/files/Hospice%20UK%20extract%20-%20Patterns.pdf

I downloaded it yesterday, and read to page 48. There is a story in it about the death of Holly, and I wonder what you make of pages 31 and 32? It is a bit complicated because Kathryn is describing things from the past - so 'Holly' would have been 40 or more years ago, I think. But - I would be very unhappy, if such a story happened the same way today: my issues are on pages 31 and 32, and I'm wondering if you can work out what I'm unhappy about?

Carol Roughley 31/10/18

At a glance, there is a lot of assumptions made of how the lady who is dying feels.
As for the enjoyment of life in food and drink, yes absolutely!


Carol Roughley 31/10/18

Would probably need more time to read the full story.

mike stone 01/11/18

Hi Carol - yes, I think I agree about 'there is a lot of assumptions made of how the lady who is dying feels' although I would put it differently: it seems to me [and I do need to read it again, although I have read it a couple of times] that the side-effect of the medication she was given could be described as 'making her feel more alive'. I didn't see anything in the story, which told me that she had the option to NOT TAKE 'the antidote' properly explained to her - setting aside why she died, it looks rather as if the doctors were 'deciding what would be best for Holly': i.e. 'medical paternalism', rather than Informed Consent. However - it is only recently with the Montgomery court ruling, has made it very clear that doctors are to leave 'quality of life' decisions to their patients.

It isn't clear what - if any - clinical effect 'the antidote' had on how Holly died: it would be interesting, to know whether Kathryn Mannix thinks Holly would have died differently if no antidote had been administered.

mike stone 05/11/18

A recent Royal College of Physicians report was about the problems of 'talking about dying', and for some years there have been attempts to promote discussion of dying. I wrote the attached piece (which contain's something I call 'Tina's Story' - a story I was told about a death, which in my opinion is very 'informative of some of the problems' which can afflict 'dying') because I don't think the problem is only that we often don't talk about dying: I think, that when we do talk about dying, we often 'imply rather than being explicit'. I see that as a problem, when 'the NHS' seems to be hoping to both promote AND RECORD those discussions - exactly how you record 'implication' is a challenge.

Associated files and links: