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

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' ?

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.

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’.

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:

https://twitter.com/MikeStone2_EoL/status/910440889406955520

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!':

https://twitter.com/MikeStone2_EoL/status/906480027109269505

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

https://twitter.com/MikeStone2_EoL/status/905707277088378880

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:

https://twitter.com/MikeStone2_EoL/status/906073527236907009

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:

https://twitter.com/MikeStone2_EoL/media

One I would point at, is at:

https://twitter.com/MikeStone2_EoL/status/905780072606556162

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

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!

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.

https://twitter.com/MikeStone2_EoL/status/938706245145546753

https://twitter.com/MikeStone2_EoL/status/938707405411581952

https://twitter.com/MikeStone2_EoL/status/938708382080434176

https://twitter.com/MikeStone2_EoL/status/938709854289571840

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

https://twitter.com/MikeStone2_EoL/status/938704526516867072

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

https://twitter.com/MikeStone2_EoL/status/938714332686413824

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

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.

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:

https://twitter.com/MikeStone2_EoL/status/948865301063655424

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:

https://twitter.com/JennyKitzinger/status/949326889977597952

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!

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.

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.

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:

https://twitter.com/kateheydonorg/status/954395601260679169

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'.

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.

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'!).

Hi Mike

Came across the attached and wondered what you thought.

Liz

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.

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).

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:

https://ourfuturehealth.rcplondon.ac.uk/podcast/end-of-life-care/

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

http://www.bmj.com/content/352/bmj.i26/rr-5

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!

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.

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'.

It was recently suggested on Twitter, by a doctor has won awards for the quality of his clinical teaching, that the way I usually write about the things of interest and concern to me - about EoL/MCA/CPR - is less-than-easy to follow.

This prompted me to cobble together a 'tweet series' about the Mental Capacity Act over the weekend, which I published yesterday at:

https://twitter.com/MikeStone2_EoL/status/1021319688553459712

There are about 20 tweets, which are in fact tweets with images attached - the images contain two imagined conversations about the Mental Capacity Act. In the first conversation I talk to an imaginary student nurse, and in the second to an imaginary family-carer who is also a welfare attorney.

The PDF I have attached here, is the two conversations you will find in the tweets but presented as a single PDF, which will perhaps be easier to read.

It makes sense to view the conversation with the student nurse, as being about what the Mental Capacity Act means. And the second conversation, with the welfare attorney, can be seen as examining the questions of how are things such as the logical handling of inevitable uncertainties, and where are 'behavioural balance points' to be set such that 'compromises and caveats are balanced and seem to be 'fair when viewed from EVERYONE'S perspective.

That second one, is something I spend an awful lot of time arguing about with senior doctors and nurses. And in all honesty, after years of doing this, I am still not entirely sure how well many of those senior doctors and nurses understand the stuff I explained to my imaginary student nurse in the first conversation.

I responded to some tweets from a consultant doctor which he made about a week ago, and which I mainly interpreted as 'the way you write is too difficult to follow!', by deciding to write a couple of 'simpler to follow' pieces. One was about what the Mental Capacity Act 'does and doesn't say' and that takes the form of two 'imagined conversations' - it is the PDF you can download from my 24/07/18 post in this thread.

I told the doctor that I would attempt to write something 'easy to follow' about Advance Care Planning as it applies during End-of-Life at Home. I had decided to write that piece, before the idea that I could explain the MCA using imagined conversations struck me: in the event, I wrote the conversations piece [which I really like, having done it] first, then started writing the ACP piece. It turned out, that writing the ACP piece was much harder - I had to throw away my first attempt, and re-think my approach. However, having in my view 'got there in the end' - I think I do manage to explain a fundamental problem with ACP in the context of EoL at Home, and to also predict a likely problem which guidance writers might create if they are not extremely careful - I quite like this piece as well.

Any feedback about either piece, welcome.

I was recently told by a doctor, that my dad's death - he died while in conversation with my mum and I - was very unusual. I was interested to learn that, and I have currently got a Twitter Poll running at

https://twitter.com/MikeStone2_EoL/status/1042025598867197952

in an attempt to get feedback about how long it usually takes, if a loved-one is dying at home, for the person to die after 'meaningful communication has become impossible'.

I've cobbled together the PDF over the past couple of days - even put in page numbers, which I often don't bother to do - and it explores, I suppose, the theme of 'are end-of-life protocols too-influenced by what the professionals can most-easily understand themselves?'.

For example, I end the Conclusions section of my piece, with a few questions:

Why, is the transition-point before which a dying loved-one and friends and family can still 'say their goodbyes', and the time after which saying those goodbyes has become impossible, any less important than the transition-point at which future CPR changes from having a chance of being clinically-successful, to almost certainly being clinically-unsuccessful?

Why is what a GP has placed on an electronic database, more significant than what a patient explained to a family-carer, two hours before the patient collapsed, and if the conversation has not yet found its way via the GP into the 'official records'?

Why do clinically-authored protocols at the very least strongly imply that the senior clinician makes the important decisions, and also that family-carers are 'somehow semi-passive bystanders', when neither the law (the MCA) nor my surveys on Twitter (see the Appendix) support that assertion?

This may not be what you need or very helpful i just want to say i think you are amazing and a real champion fighting a fight which plainly needs to be fought and your just the person for the job. It takes a strong capable person and you are plainly and abundantly that person. i salute you but i also wish you and your family hadnt had to go through what you have. Every word echoes the truth of the situation and the way those that really know and care get sidelined and side swiped by highly paid professionals who do have a hard job but should be well trained enough and humble enough to listen and to not think they know it all or always know best. I honestly salute you and stand by you albeit virtually

Thanks Linda - you are praising me far too highly. But, as you say, 'it is a fight that needs to be fought'. It is much too easy for relatives, etc, to get, as you say, 'side swiped' by the professionals - somehow, we need to change that.

I had not, certainly recently, looked at the forms and 'separate guidance' about Lasting Power of Attorney - I had simply worked from the MCA itself - but earlier this week I took a look.

There is something very 'peculiar', if you have spent years analysing the Mental Capacity Act via the Act itself [as I have], about section 7 of the LPA form: see the PDF for an explanation of what I find problematic about section 7 and 'giving a legally-binding instruction about future MEDICAL TREATMENTS to your welfare attorney'.

I have just received a reply from the Office of the Public Guardian (OPG) in answer to a question I think I mentioned in my PDF about section 7 of the LPA form (see the previous post in this series). I asked the OPG, how can you change your mind (i.e. remove) about a decision which you have recorded in section 7 of the LPA form after you have registered the form, WITHOUT removing the appointment of your attorneys? In other words: 'I've registered an LPA and appointed my welfare attorneys in it - I put a decision in section 7, and I want to change my mind about just that decision: how do I do that?'.

Well - you can't do that, and this is the e-mail the OPG sent back in answer to my question:

'Dear Mike Stone

Thank you for your email dated 17th October 2018, the contents of which have been noted.

In answer to your question, It is not possible to remove an instruction on a Lasting Power of Attorney (LPA) without revoking the entire LPA. The only way to potentially revoke instructions contained within a registered Lasting Power of Attorney whilst leaving the power registered would be to apply to the Court of Protection. Even then, it is extremely unlikely the Court would do this.

In any case, the cost to create a brand new Lasting Power of Attorney would be far cheaper than the cost to apply to the Court of Protection, the cost for a court application currently stands at £385.

If you have any further queries, please do not hesitate to call us on 0300 456 0300 or email the OPG at [log in to view email address]. Further information can also be found on GOV.UK at www.gov.uk/power-of-attorney and Justice at http://www.justice.gov.uk/about/opg

Kind regards'

CONCLUSION: even setting aside the legal issues I pointed to in my PDF (basically, I'm not convinced that it is correct for LPA 7 to allow for legally-binding instructions about future medical treatments), the obvious advice must be DO NOT put as an INSTRUCTION in section 7 of an LPA form, anything which you COULD write down as an Advance Decision (ADRT). The law for ADRTs is clear - you can make, alter [but I don't advise altering - altering is trickier than just making a new ADRT] or retract your ADRT whenever you want to, while you are still mentally-capable. And doing that doesn't involve any costs at all, beyond the paper (or form if you are getting an ADRT form from someone else, instead of creating your own) you write it on - of course you still need to get it witnessed, but you are in control of your own ADRT, and in essence an ADRT costs nothing. Whereas changing your instructions on LPA forms, is slow, expensive and in general 'a hassle' - so:

IF you can impart your decision by means of an Advance Decision instead of via section 7 of an LPA, THEN JUST DO IT WITH AN ADRT!

I was reminded of this survey, which I carried out in 2012, by a tweet today that pointed at a recent paper by Dr Mark Taubert, in which he comments on what I will call 'some weirdness around' CPR decision-making:

https://twitter.com/DrDavidWarriner/status/1095050450926297089

I'm going to ask this on Twitter, and I'll also ask it here: does anyone know of any similar 'surveys' which have been performed and reported by healthcare professionals, asking if cardiopulmonary resuscitation should change from 'opt-out' to 'opt-in'?

A couple of weeks ago, Dr Mark Taubert asked people 'can I use these tweets when I'm teaching?': the answer he got from people was 'yes' [along with 'tweets are public - anyone can use them']. Since then, there have been an unusual number of tweets more-or-less on the topic of CPR which I've spotted, and with the aim of presenting some tweets which could be used by 'teachers' to illustrate the many different perspectives which influence CPR decision-making, I have cobbled together this PDF: it is intended to 'help with discussion of' the complexity of CPR decision-making. Although, I have added an appendix, which points to pieces that explain my own position: that can be viewed as somewhat different, from the rest of the piece, which in essence simply explains how perspectives influence beliefs and behaviours.

The file is a very slightly improved - I added one extra tweet, which I had forgotten to include, and I also made slight alterations to parts of the text to make it clearer - version of the piece you can download from my previous post (so download this one instead of the earlier version).

The tweet I had forgotten to include, was from a doctor who performed CPR on an elderly patient in Accident & Emergency, and he tweeted:

I can confirm that doing CPR on an osteoporotic 92 year old was one of the worst things I’ve done as a doctor.

A discussion about Advance Decisions (ADRTs) was taking place on Twitter yesterday, and Jason Dixon would like some sort of online register of ADRTs: I'm in essence fine with that, for ADRTs which would be placed on the register AFTER the person had lost the capacity to revoke the ADRT, but it is much more problematic while the person is still capacitous [I'm not going to explain why here, it takes a while to do it properly]. I wanted to point Jason at something I wrote back in 2012, so I'm posting the piece here - I think we need to 'get ADRTs right' BEFORE we establish an online register of ADRTs (although many people disagree with me, and would like a register 'now').

The PDF is a discussion of a paper about assisted-suicide and euthanasia, from my own perspective: this will not be of interest, I suspect, to most readers but there are reasons why I decided to write the piece [one reason being that one of the authors of the paper is deeply involved with the MCA].

A doctor posted on Twitter, about the piece I posted in my previous addition to this thread 'Very insightful PDF, meant to skim read it but then read it twice, thanks Mike.'. When I went back and re-read my piece, I found a few typing mistakes - so the version 2 I've attached here has had some of the typos corrected.

Take the time to help other people without expecting a reward or gratitude
... "Make each new day count by helping someone or just making someone
smile. We did today, the rewards are remarkable

I was recently asked on Twitter, if I thought my experience after my mum died would have been better, if I had been a Welfare Attorney.

It isn't an easy question to answer - but I've done it 'briefly' in the PDF: the answer is that while I might have had a similar 'bad experience', I'm sure the police would have also had 'a bad experience' as well, if I had been a welfare attorney.

Mike
I was originally going to say that the welfare power of attorney would have made a difference, but I have recently come across four cases recently where someone tried to implement last wishes and best interests and was overruled. I guess its about trying to get the understanding of the whole process better understood so that LPA's for welfare are able to acceded to their loved ones wishes.

Liz,

There seem to be countless tales, of welfare attorneys [under the MCA/LPA] discovering that when 'push comes to shove', the professionals ignore the fact that the attorney is there to make any necessary best-interests decisions. That simply cannot be right: the whole point of getting someone appointed as a welfare attorney, is so that the person you've chosen will make any decisions which you can no longer make yourself.

Senior clinicians who write policy and protocol, write things which definitely imply that it isn't 'the default position is the welfare attorney decides' as well as misdescribing other aspects of the MCA: notably the current ReSPECT form with its absurd exclusion of the signature/s of anyone who isn't a clinician, and the peculiar way that Advance Decisions refusing CPR are 'translated into' DNACPR forms.

I'm not sure how to change this - but I've spent a long time, describing the problem! Often here in the DiC discussion pages. We do have to change this - if we can't change the current 'clinical mindset' then as more patients and relatives become aware of their rights and duties under the Mental Capacity Act (and I hope more people do become better-acquainted-with the MCA) what will happen is, presumably, increasingly 'fraught' conflict between clinicians and, especially, family-carers.

And I'm not keen on conflict - from my Family-Carer during End-of-Life at Home perspective, 'conflict' makes a bad situation much worse, and much more distressing. I would point out: it isn't all that easy, to get many of the clinicians to even talk about the issues, let alone to change their way of thinking.

Brief comments about the words 'should' and 'must' in writings and guidance related to end-of-life behaviour and protocols.

The PDF explains that the best-interests decision-making described by the Mental Capacity Act to apply when a patient lacks the capacity to make his or her own decision about a medical intervention, replaces (or stands-in at) the stage when a patient with mental capacity would decide. So MCA Best Interests is NOT INVOLVED in the decision about what treatments are offered.

Being a good person, costs nothing! Expecting praise is. it's that simple

When I was trying to work out exactly what Dr Zoe Fritz means when she says 'shared understanding', I found a paper by Richard Holton and Zoe Fritz which argues in favour of a concept they label 'Informed Trust'. If I understand their idea correctly [which is by no means certain!], then I much prefer the alternatives I describe in my PDF - of Devolved Trust and Informed Distrust.

As the labels themselves are a bit baffling, I will explain that the context of this is the consultation process, and 'Informed Consent'. It is difficult to summarise their paper or my 'riposte', but I will show something form the start of my PDF:

Holton and Fritz say that their paper is about uncertainty and its implications
within healthcare, and at the end of the first paragraph of their paper we can
read:

‘Most centrally we argue that it is best understood, not in terms of informed
consent, but in terms of informed trust.'

There is currently research and feedback being undertaken, which MIGHT contribute to the creation of some sort of 'National DNACPR Policy for England'.

If there is to be such a policy, I will be deeply-annoyed if it includes the extremely-unhelpful, and logically incorrect, phrase 'DNACPR is a medical decision'.

The PDF, with an internal title of 'If you don't like it, what can you do about it?', isn't very long [at least if compared to some of my pieces] and it explains why the phrase - with its implication that 'A GP can somehow make sure that CPR will not be attempted' - is deeply unsatisfactory.

Hi Mike
As always a thought stimulating comment Finding myself in a situation where I am having these discussions in relation to my Mum, I am so glad that we took the opportunity to talk whilst she was well. There is a definite pressure to make a decision and I was so glad that I was able to argue her case yes there is a dnacpr in place but this in the context of her wishes. However I too am concerned about the power ficen to clinicians in this wording. What if someone has not been able to have the discussions with their loved ones. Keep up the good work and more power to your ear bending.

When I recently commented on X/Twitter that the phrase/sentence 'DNACPR is a medical decision' should be banned from any 'official' guidance about DNACPR and CPR, someone who teaches CPR/DNACPR to doctors and nurses asked '... so what can we say, which you think is right?'.

The PDF contains a list of things which I myself would be saying, if I were teaching about decision-making for CPR. It is 'on a theme with' the PDF 'What CAN you do' which I posted in this thread on 29/08/23.