Mike Stone's PDFs: I hope to post various PDFs about EoL/MCA/CPR in this thread

mike stone 03/06/17 Dignity Champions forum

I have been somewhat at a loss, since in its previous re-vamp DiC lost its ability to upload files. The great advantage of the DiC website - apart from its wide readership - is that it is 100% open access with respect to reading and downloading (unlike, for example, DiA on Facebook).

I will be posting my shorter pieces here, but not singly: and I am starting by posting (all feedback very welcome) 5 short PDFs which I have joined together [it is easy to 'see the joins']. They are short, so anyone interested can just take a look - the title of the final one is a little mysterious, and in fact it analyses the concepts of 'expected and unexpected death' for known EoL patients who are at home (the conclusion being that 'unexpected EoL death' is a deeply unsatisfactory idea/label and that you cannot even in theory sensibly use ONLY 'expected' and 'unexpected' death for end-of-life at home).

The pieces are, in order, titled:

A 'beautiful analysis' of the Mental Capacity Act

Decision-Makers and the MCA

Some Points about CPR

There is a problem with Advance Decisions

An End-of-Life Timeline with an emphasis on Death at Home

Associated files and links:

Post a reply

mike stone 05/06/17

The attached PDF contains in order:

A Little More About ‘Talking about Death’

Things Change

The Consequences of Role-Induced Perception

I Lied

All four pieces are very-much ‘on a shared theme’ so if you read the PDF, I suggest you just read from the start onwards. I will point out that there is something in the pieces, which means you really DO NEED to read ‘Things Change’ BEFORE you look at ‘I Lied’. If people do read 'Things Change' and afterwards read 'I Lied', I would be interested in any feedback - 'does it make the point' ?

Associated files and links:

mike stone 06/06/17

I wrote a very short piece 'The Fossil Tooth of the MCA' some time ago, highlighting the 'conceptual importance' of section 25(4)(c) of the Mental Capacity Act.

Since then Mr Justice Charles has ruled in the Briggs case, and I have written a foreword to 'Fossil Tooth' [longer, in fact, than Fossil Tooth itself].

Mr Justice Charles has shed some light on best-interests decision-making during incapacity - supporting a position previously adopted by Mr Justice Hayden, and which was in line with my own analysis of the MCA - but we do need a lot more clarification of some parts of the MCA. Notably, we need to sort out the problem with 'verbal refusals of life-sustaining treatments and why ADRTs refusing life-sustaining treatments need to be written to be valid', a problem I have analysed in 'There is a problem with Advance Decisions' which can be found in the PDF you can download from my first post in this series.

Associated files and links:

mike stone 19/06/17

The attached PDF is 3 pieces joined together. Two of them stem from some recent discussions I’ve had about ‘grief and grief disorders’. The first piece

The ‘Immediate Shock’ of Bereavement

applies the idea of ‘psychological first aid’ to Home EoL Death and ‘unexpected’ deaths: current behaviour is actually more ‘psychological assault’ than ‘psychological first aid’ following many entirely natural deaths.

My second piece

A Personal Reflection about my own dubious healthcare decisions

is a short discussion of my decision to not seek treatment for my own depression: that is in the context of a ‘Twitter chat’ I’ve been having with a doctor.

The third piece

Complex Nuance is reduced to False Binary Choice – and True Binary Choice is falsely blurred

is something I cobbled together when I heard a phrase on Radio 4 recently: it isn’t necessarily as well-written as it could be, because I wrote it ‘on-the-fly’, but some readers might see ‘what I’m getting at’.

Associated files and links:

mike stone 21/09/17

I have decided to post links to some of my Tweets - more specifically, to some of my 'linked series' of tweets - in this thread, as well as posting PDFs.

My tweets often 'cheat' - I upload an image file, which is a screenshot of text, so I 'break' the 140-character limit. So my tweets are often similar to, but more 'bite-sized' than, my PDFs.

I have posted a series of linked tweets which examine, section-by-section, part 4 of the Mental Capacity Act at:


I want to know if professionals accept that family carers should 'follow decisions made and expressed by their dying loved-one even if those decisions 'are not embedded within 'the records'' - my own answer is 'yes, the patient decides!':


I posted a series of tweets - which I hope are 'thought-provoking' - about end-of-life at:


I have explained in two tweets - and a lawyer gave me an 'off-the-record agreement' ('I would not be able to comment officially on your tweets – but privately (for what it’s worth) they look spot on to me!') - that it is complying with section 4(9) of the Mental Capacity Act, which is the legal requirement around decision-making when the patient/person lacks mental capacity:


mike stone 21/09/17

If anyone finds any of the above 'useful' then - and you will need to 'browse for yourself' - all of my 'image tweets' (hundreds of them) can be found at:


One I would point at, is at:


I get very annoyed indeed, by the 'paradoxical systemic behaviour' which I point at in that tweet!

mike stone 30/11/17

I was looking at a Welsh website about Advance Care Planning (ACP) last week - I became so 'frustrated' by what I was finding on the website, that I decided to write a piece about ACP to send to the website.

The website is at http://advancecareplan.org.uk/

One of my major issues with the website, is that it doesn't appear to match-up with the reality of what happens if family-carers and 999 paramedics are interacting, 'during an emergency' and when the patient is at home, and isn't able to make and express decisions (i.e. when the patient 'has collapsed' or is in cardiopulmonary arrest). The 999 Services do not default to 'believing the family carer' - the 999 staff seem to be 'records-led' in their behaviour. And, for both ACP and also Advance Decisions, mentally-capable patients can change their minds at any time of their choosing - 'the clinical establishment', including ReSPECT http://www.bmj.com/content/356/bmj.j876/rr-7 seem unable to accept that when end-of-life patients are at home, the patients might have expressed a decision to a family-carer FIRST. Often, it is the people sharing a home with the patient, who are the only people a patient can give a decision to: 'the system' seems to want 'proof about' things - what happened when we were not there - which it unreasonable to want proof for.

It is abhorrent to default to 'we don't trust family carers BY DEFAULT' - it is quite bad enough, when your loved-one is dying, without then being confronted by 999 staff who imply that you cannot be trusted!

Associated files and links:

mike stone 07/12/17

I have just posted a series of 'video talks' – short slide-shows with a voice-over – on Twitter. I'm new to these - I only made my first one (not one of these, one I posted earlier in the week) last weekend: and I find making them something of a challenge, compared to writing a piece. However - videos on Twitter are only up to about 2 minutes, so these are short: also, apparently some people prefer to listen rather than to read (although listening to me, might be another matter - I'm no Richard Burton!).

These 4 are about section 4(6) of the Mental Capacity Act, and Best-Interests Decision-Making.





Also a video talk about the complexity of communication during end-of-life at home:


And a video talk about what the MCA provides (a legal defence, not a legal authority) and also about Best Interests compared to Necessity:


Feedback – are these short video talks helpful or not, and have I said anything wrong in them – would be very welcome.

mike stone 23/12/17

I was pointed at a paper about 'advance directives' last week, during a discussion on Twitter.

The Mental Capacity Act, has defined an Advance Decision in English and Welsh law - the Advance Decision of the MCA, is the TRANSLATION INTO SPECIFICS of the 'general concept' of an 'advance directive'.

The attached PDF - which contains a link to the paper we were discussing - is my brief analysis of the paper: in particular, I would point out that the Mental Capacity Act does NOT require that a mentally-capable person 'explains my reasons for refusing an offered treatment' during either a normal consultation (Informed Consent), and it similarly does NOT require that the reasons for the refusal of the treatment are stated on an Advance Decision (ADRT). Our law could rerquire that - but it doesn't.

Associated files and links:

mike stone 06/01/18

There was a talk by Jenny Kitzinger on BBC Radio 4's PM on Tuesday. She told listeners that her mother had an Advance Decision which refused being taken from home to hospital. I've asked on Twitter at:


Opinions seem to differ on this - but when patients and their families are embarking on end-of-life planning, 'can I use a written Advance Decision to forbid my being taken to hospital?' is a question we need to understand the answer to: it is worse-than-useless if a patient writes an ADRT refusing transfer from home to hospital, the family carer is perfectly clear in understanding that their loved-one would definitely refuse being taken to hospital, but the patient collapses, the family carer calls 999 and when the ADRT is shown to 999 paramedics, the paramedics say 'you cannot validly refuse transfer to hospital in an Advance Decision'.

Does anyone have a view - can an ADRT forbid transfer to hospital, or is that not possible with an ADRT (the legal rules for ADRTs are in sections 24 - 26 of the Mental Capacity Act)?

There is some clarification, about her mother's ADRT and how it was used, from Jenny Kitzinger in her tweet at:


As I have said - views on this would be appreciated, and would people please explain their 'role' if they answer (for example 'I'm a 999 paramedic, and I think ...' or 'I'm a patient and my understanding is ...').

It is 'tricky' - I will post my own position on this, but I want to see what people think before I wade in!

mike stone 16/01/18

I have not had replies to my question (see preceding post), about whether an Advance Decision can validly refuse transportation from home to hospital, from 999 paramedics on Twitter. I suspect I will not be getting any.

I wrote up my own analysis of the question, last week, and now I will publish it (the attached PDF). My analysis starts by explaining why the question is so important to many family carers.

I will now - once I can get Twitter to let me paste URLs, which I've been having problems with - invite 999 paramedics on Twitter to comment on my analysis: I think, I might get a few of them to do that. Other people's comments are also welcome.

Associated files and links:

mike stone 16/01/18

Since joining Twitter last year, I have acquired some new contacts within the '999 paramedic community'. My dispute with 'ReSPECT' is also still ongoing.

Some years ago I sent out a survey about various end-of-life issues, and my survey started by asking two questions about a scenario I title 'Father and Son'. I have extracted the Father and Son question from my survey, and written that section of my survey up in the attached PDF, because the question and the answers I obtained are relevant to my discussions with both 999 paramedics and also 'with' ReSPECT.

Associated files and links:

mike stone 20/01/18

Some months ago I sent the attached PDF to a 'fellow NHS campaigner', who does 'talk about the emotional impact' much more than I do, while campaigning. I'm posting it, because the 'topic' has just 'popped up' during a Twitter thread:


That tweet, by Kate Heydon, is:

'Except, initially I was (were you also?) too distressed to talk about the experience. The trauma of it affected not just me, but my (extended) family, relationships. Now I'm able to mostly handle it in a less-emotional way. It takes time to communicate, after the fact, I think?'

Anyway - I've posted my earlier PDF, which I had sent to a different 'contact' by e-mail, so that I can now point Kate Heydon at it: I should point out, the Kate I mention in the PDF, is NOT Kate Heydon. It is possible the Twitter discussion, and my own PDF, might 'ring some bells' with people who have had bad experiences 'of NHS behaviour'.

Associated files and links:

mike stone 02/02/18

I had an interesting hour-long chat on the phone yesterday, with a nurse, and during our chat, she mentioned that relatives who have been appointed as Welfare Attorneys find it a burden to make best-interests decisions. I agree - but, the 'conclusions' which clinicians reach from that truth, are the wrong ones. As I realised that I had written a few times about this issue in some of my recent pieces, but not as the main theme of those pieces, I decided to quickly draw together what I had posted elsewhere, in a single piece (attached). I've written this piece very quickly - about 30 or 40 minutes - and although I've checked the links are working, there could well be the odd typo in it.

Associated files and links:

mike stone 19/02/18

Two senior 'academic' nurses were discussing the use of Social Media for research on Twitter last week: this 'caught my eye' and I've cobbled together my [largely 'off-the-top-of-my-head'] thoughts about using social media for academic heath research, and for campaigning to change NHS behaviour, in the attached PDF, which has an emphasis on 'ethical issues'.

Any dodgy proof reading is 100% down to me - and it ends with a question (so making it 'neatly circular'!).

Associated files and links:

Liz Taylor 23/02/18

Hi Mike

Came across the attached and wondered what you thought.


Associated files and links:

mike stone 24/02/18

Hi Liz, just had a quick read (I'm a bit occupied today with various Twitter-originated things). Interesting, and I might see if I can track her down. I was struck by this sentence:

'Planning for end of life needs to take place early in the course of the disease process, while the person has sufficient mental capacity to consider their preferences and make decisions, not the focus of this blog, but a timely diagnosis of dementia whereby they still have capacity to make plans for their future is essential'

My first general comment, is that the theme of 'plan as early as possible' isn't a great fit with the rest of the paper [unless we assume that 'a timely diagnosis of dementia' equates to 'a diagnosis when the dementia is already quite significantly-developed']. More on my own theme/s - and I'm guessing that you would have expected me to say this - I would be interested to see a blog from her about 'their preferences and make decisions [and how that turns into decision-making and decision-implementation]' because she ducked that enormously-significant, but also disputed, contentious and often badly-implemented area, with her 'not the focus of this blog' comment.

mike stone 05/03/18

Last week a lawyer, Tor Butler-Cole, tweeted the link to a video of a Supreme Court case, during which the Mental Capacity Act is being discussed. I've written something about the video, and attached it here as a PDF, instead of trying to comment on Twitter [which would be more difficult - Twitter is more suited to 'extreme brevity' by my standards].

It is quite interesting - although definitely a minority interests - to see the barristers and the judges talking to each other.

Interesting that this morning - but not yesterday - I can see a mistake (a missing 'an') in my first sentence: despite reading that several times yesterday, I didn't notice it (and, of course, this laptop doesn't have the right software on it for me to correct that minor error at the moment).

Associated files and links:

mike stone 26/03/18

I was alerted last week, by a tweet, to the presence on the Royal College of Physicians website of a podcast, which features a patient and three doctors talking about various end-of-life issues. The podcast is about 40 minutes long, and is informative – it is at:


There is an invitation to comment on it, at the end of the podcast: it doesn’t in fact invite comment by e-mail, but I intend to send some comments by e-mail to the 3 doctors who are part of the podcast, and also to Mark Taubert, who is involved with very similar things in Wales.

I wrote my comments as a PDF, and because 2 of those 4 doctors are people who I already correspond with, but the other 2 are ‘new to me’, I also decided to write another PDF which explains ‘how I became involved in this end-of-life debate’.

I have attached both PDFs.

Another thing which happened last week, was my receipt of the most recent e-mail from some of the clinicians who are part of the development of ‘ReSPECT’ - it is hardly a secret, that I intensely dislike ReSPECT. I will be sending the ‘My Own Story’ PDF to the ReSPECT clinicians: they tell me that they cannot understand why I am so set-against ReSPECT in its current formulation, and in particular they seem unable to see why I have objections to a ReSPECT Form which bears only the signatures of clinicians, and which is largely a document that is promoting, as opposed to curtailing, best-interests decision-making.

I will put to the ReSPECT team the following question: think about the problems I had with 999 Staff – and tell me, do you honestly think that promoting end-of-life documentation which carries ONLY CLINICAL SIGNATURES isn’t going to make the problems I suffered from more likely to be inflicted on relatives and family carers?

Instead, logically-appropriate signatures should be on forms intended to be read 'during clinical emergencies'. So, if a form includes 'an expert opinion about a clinical prognosis' the doctor who is giving an opinion about clinical outcomes [for example 'I do not believe that CPR could ever restore this patient to life, because she is already too clinically fragile'] must sign for that. Patients who record 'their preferences' on a form, should sign the form for that: and, it would be helpful to also have a section where patients who have EXPLAINED THEIR 'PREFERENCES' IN DISCUSSION, listed the names of the people with whom they had discussed their preferences ('preferences' are 'if whatever happened, then I would PROBABLY want ...') and THE PATIENT AND EVERYONE ON THE LIST would sign that section of the form. And crucially - doctors should NOT be signing to 'validate' compliance on the part of other people (notably Welfare Attorneys and Court Deputies) with the law: NOBODY should be 'validating' the compliance of others with the law. For forms which are intended to be read and to affect behaviour DURING 'emergencies', the thing re 'legal compliance' which can justifiably be documented - which is 'what I MYSELF have ACTUALLY DONE to comply with legal requirements' - is NOT APPROPRIATE (so while a record of how the law has been complied with could justifiably be present somewhere - the appropriate place is NOT on a form which is intended to be read DURING 'a clinical emergency').

I pointed this out - that ReSPECT has not got the legally-appropriate signatures on its 'main form' - in a BMJ rapid response early in 2016


and it honestly perplexes me when the clinicians who are defending the current version of the ReSPECT form, tell me they do not understand why I forcefully object to it!

Associated files and links:

mike stone 08/05/18

I have just read both Practising Realistic Medicine (part of the development of healthcare in Scotland) and also a paper by Kit Byatt and Sarah Chapman.

Both mention concepts such as 'evidence-based medicine' and 'shared decision-making', and because I want us to all move to 'we should all be applying the Mental Capacity Act correctly' as our starting point for discussions of this topic, I decided to cobble together a piece on the issue.

I hope I've proof-read it okay - there isn't anything new in it, if you are someone who already follows my writing about the MCA. But both PRM and the paper by Byatt and Chapman (links near the start of my PDF) are worth reading: PRM is longer, and more of a 'specialist read' - the paper by Byatt and Chapman is shorter and perhaps easier to follow for a general readership.

Associated files and links:

mike stone 21/05/18

I came across the names of two law professors in Practising Realistic Medicine, and decided to ask them a question: while doing a bit of 'Googling' I came across a paper by Professor Emma Cave about The Therapeutic Exception. I have written some comments about Emma's paper, as one of the 2 attached PDFs. I will point out - you need to read Emma's paper (my PDF contains links to it) to make much sense [assuming I've written any sense] of my comments on it, and 'it is very much 'specialist reading''.

While I was putting together comments on Emma's paper, I was sent a 'conundrum' about advance care planning and the Mental Capacity Act, by a palliative care consultant - it prompted me to write a short piece (the other attached PDF - 'Yes - But No, But ...') in which I try to explain [I suspect not all that clearly] why doctors and nurses, seem to 'see an entirely different MCA, from what many patients and relatives see when we look at the MCA'. That one isn't anything like as much of a 'specialist read' as my PDF about Emma's paper - I hope 'Yes - But No, But ...' might make it a bit clearer, why implementation of the Mental Capacity Act is so difficult for working doctors and nurses. Please note: I'm saying, that I can see why they find it so challenging to implement the MCA 'as it is written' - I'm not saying that I accept this situation, of patients and relatives being able to read the MCA, only to discover [often in very fraught situations] that 'the professionals aren't doing what the MCA says!'. Put differently - I'm trying to be fair to doctors, nurses and 999 paramedics, but I still want them to change their behaviour and to implement what the MCA 'says'.

Associated files and links: