Two Surveys I carried out last year should be available by email if anybody wants them

mike stone 19/02/15 Dignity Champions forum

Now that DIC seems to allow people to post their contact e-mail addresses (as Rochelle Monte has recently done), I should be able to post my own e-mail address

[log in to view email address]

and an invitation for people to ask me for a couple of surveys, if they are interested.

One survey was to Clinical Commissioning Groups, and asked 2 questions. The other survey was to hospitals, and asked a single question about their Do Not Resuscitate forms.

My policy is to include responses as I received them, after anonymisation - so, ignoring my own 'waffle' (why I asked, what I think the answers show, etc) - you see the questions as I asked them, and the unedited responses.

The Survey of Clinical Commissioning Groups (One England One Law), obtained 39 responses.

The questions I posed were (this is the online form version of my questions):

Dear 'Recipient CCG',

I am sending an e-mail to the contact e-mail addresses of as many CCG's as I can find contact e-mail addresses for, of those listed on the above webpage, in batches. I have only found an online form for your CCG - that stops me from sending the explanatory
attachment, and it makes it more difficult for me to be as clear about my two questions, but I'll try.

I am not a clinician, nor an academic, but I am 'involved in' debate with 'the NHS' about certain end-of-life issues. I am trying to get feedback, about two questions, which I pose below: I am not convinced that this is an FOI request - I consider it as 'more a request for some academic discussion', so could you please forward it to whomever within your CCG could best engage with, and answer, the two questions.


What would GPs in your CCG, say in answer to Alan's question(s) ?
Alan (73) and his wife Liz (71) turn up at their GP's Surgery. Alan is believed to be in good health, but he explains that his mum had a severely incapacitating stroke 6 years before she died, and he is averse to such an outcome for himself.

So he asks his GP "How do I refuse any attempt at CPR, if I am in CPA - if my heart has stopped, I prefer to be left alone to die, rather than to face the highly uncertain outcomes of 'successful' CPR.

Also, nobody could certify that death at the time, but it is my decision and not Liz's - how do I make sure that Liz, who knows I don't want CPR but would presumably be shocked and should not therefore be 'unnecessarily harassed' just after my death, isn't messed about by the police: I think messing Liz about, would inevitably strengthen her long-term memories of the actual death, and that is a very bad thing.

But I want Liz to be able to call 999 if I collapse, because if I'm not in CPA I would probably want treatment - for example, if I've collapsed with a stroke, and it wouldn't kill me, I would want as much active treatment as possible, to avoid living on with avoidable clinical

How do I achieve this ?"

The 'concise version' of that question, is something I recently swapped e-mails with a GP about:


I attach a PDF, which is two pieces joined together: the second piece is about some of my BMJ rapid responses, but my specific question is about the first piece.

In essence, it asks 'How could an elderly but not 'within end-of-life' patient, who has considered the possibility of a cardiopulmonary arrest, and who has decided to try and exercise what appears to be a clear legal right to refuse any future treatment, successfully forbid attempted CPR [for a truly 'sudden' CPA] by 999 Paramedics ?'.

It is a little more complicated: the patient in my scenario, Alan, also points out that this refusal of CPR is his decision, so he wouldn't want his wife 'inappropriately harassed by the police'.


Difficult situation.

Personally I think that it should be an individual's right to make this type of decision (and the recent hospital case stated that CPR decisions should not be made without involvement of the patient [putting aside capacity issues for the moment]) and why should
health professionals think that they should be making decisions of this nature without discussion with the individual?

the process is more difficult...

there appears to be no way of facilitating this with an advance directive and non-doctor health professionals seem to be increasing reluctant to make decisions using 'clinical judgement'

AND forms locally (which I do not like) seem to be de-professionalising nurses and paramedics when it comes to end of life decision making. I think better training and them being prepared to take more responsibility could be a better way forward

Not sure if this answers your question



This amounts to, 'How does your CCG's policy for handling end-of-life home death (where EoL means 'occurring at any time after a 'final year of life' diagnosis), distinguish between 'an early death within known EoL' from 'the death of a thought-to-be-healthy 25 yr old, who
'suddenly drops dead'' ?

In essence, I am asking 'If we define 'expected death' as 'a promise from the GP to certify any future death which doesn't appear to have been obviously unnatural, even if the GP cannot attend post-mortem'', does your region's community death policy distinguish between 'earlier-than-'expected'' EoL deaths, and 'genuinely sudden deaths'.

And, if it does, how ?

My piece on the BMJ might make the question clearer:

I explained the problem in that piece:

'There is no guidance within current community policies, which properly addresses 'I would not be surprised if the patient dies, but I would need to attend post mortem before deciding whether to certify' - currently police behaviour tends to treat 'early EoL death' as very much akin to the sudden death of a believed-to-be-healthy 25 yr old.
This is absurd, to put it mildly, when you are in the position of a person who is living with the patient. The transition from considerate treatment by nurses and the GP, to 'being treated by the police like a suspect when my loved one finally died', is a huge shock to the just
bereaved, and very 'disturbing'. I also think such police behaviour reinforces long-term memories of the death itself, which is a bad thing, and is being ignored by policy creators.

So the death of an elderly patient who 'might die any time, but I (GP) cannot say whether tomorrow or in a year's time' is treated as a 'sudden death' unless the GP attends post mortem and decides to certify: and even an 'expected death' will become, from the
perspective of the care home, 'a death we, and the police, are not certain will be certified' if the GP has not visited within the previous 14 days. The police have a strong tendency to 'seek to investigate in depth' any death until certification is effectively a certainty - this damages bereaved relatives, and is neither 'balanced' nor rational, if a patient is known to be 'very elderly, final-year-of-life or has a condition which involves an ongoing but small probability of 'dying at any time''.

And the care home, or a relative in the patient's own home, cannot be certain that the GP will be able to attend promptly, when the death occurs.'

Regards, Mike Stone

PS There is absolutely no question, that a written Advance Decision SHOULD be capable of refusing CPR for a 'sudden cardiopulmonary arrest' - you only need to read section 25(4) of the Mental Capacity Act, and add a footnote to your ADRT saying something like 'Even if my arrest is very unexpected, and therefore my death could not be certified, my refusal of CPR still stands'.

But, there are serious 'perspective issues' here:

I view an ADRT as a fairly straightforward thing: it is my expression, as a patient, of my decision to refuse a treatment which I am refusing in advance, to guard against the possibility that I will not be able to prevent an intervention by simply saying 'Don't do that !' at the time. I see a written refusal of CPR in the form of an ADRT (which would therefore be witnessed, etc - but which would not necessarily have been seen by any clinician prior to attendance at a CPA) as being something which if superficially 'correct', has to be followed by 999 Paramedics.

But 999 Paramedics, think they are supposed to 'check the probity' of an ADRT refusing CPR: checking 'the probity' of an ADRT is not the same as checking its prima facie validity, which is all the MCA seems to require - and, it isn't possible to refuse CPR for a 'sudden arrest' if paramedics wish to check 'the probity', as doing that is impossible during a CPA.

The hospital survey about an aspect of DNACPR forms obtained responses from 10 hospitals, and the e-mail I sent to them was this:

Dear Sir or Madam,

Assuming that your trust provides 'general' hospital services for adults, would you please forward this e-mail to your hospital's Director of Nursing for me (if you have more than one such hospital, with different DoNs, please forward to each),

Regards, Mike Stone

Dear Director of Nursing,

There seems to be something legally flawed/anomalous, about contemporary DNACPR Forms, and I am sending this e-mail to a selection of hospitals, to try and be more certain of this. Nurses are the most appropriate HCPs for this issue, viewed 'in general terms'.

I assume that your hospital has got a DNACPR Form (using the term, to include any standardised record of DNACPR status). As CPR is essentially no different from any other [life sustaining] treatment, the justifications for withholding CPR are (ignoring any 'cost issues'):

1) the patient has refused the intervention;

2) the intervention could not be clinically effective;

3) the intervention is being withheld as the result of a Mental Capacity Act best interests decision.

All DNACPR Forms, seem to include those 3 justifications - and many forms, record the existence of welfare attorneys (i.e. of 'LPAs').

However, I have not yet seen a DNACPR Form, which EXPLICITLY provides for the signature of a welfare attorney as the justification for a best interests DNACPR decision INSTEAD OF the signature of the 'senior clinician'.

This is legally confused, at best: if I appoint someone as my welfare attorney, and give my attorney powers over life-sustaining treatments including CPR, then it is the attorney who has the legal authority to 'make' best interests decisions about CPR - and the attorney's decision is not 'validated' by anyone else (so the senior clinician does not somehow 'validate' a DNACPR best interests decision, which was made by a suitably-empowered welfare attorney). The law is very clear indeed, on this point.

So my question, is does your hospital's DNACPR Form, make it clear that if a best interests DNACPR decision was made by a suitably-empowered welfare attorney, that the decision is not somehow 'authorised' by your clinicians ?

Regards, Mike Stone

PS There are more complicated issues around 'best interests' - but this one, is entirely unambiguous (although court deputies have no powers over life-sustaining treatments, anyway):

MCA section 6(6)

Section 5 does not authorise a person to do an act which conflicts with a decision made, within the scope of his authority and in accordance with this Part, by-
(a) a donee of a lasting power of attorney granted by P, or
(b) a deputy appointed for P by the court.

PPS This is part of a 'wider discussion' I am engaged in, about various end-of-life, MCA and related issues - the absence of the signature of welfare attorneys on contemporary DNACPR Forms, is very revealing of 'clinical thinking which departs from the law'.

The responses to both surveys, make both fascinating and 'disturbing' reading - for example, these are from the CCG survey:

Response no 1
Dear Mr Stone
Further to my email of 8 August: I have now discussed your email with a clinical colleague here at XXY CCG.
In your email you made reference to many different issues relating to end-of-life care and mentioned several hypothetical examples. Hypothetical situations are difficult to address in this context since, generally speaking, decisions concerning end-of lifecare/CPR/resuscitation are the responsibility of the clinician in charge, who will make the most appropriate decision for the patient, unless the patient is capable of making, and has made, a decision for themselves. In some situations - for example, paramedics attending
to an emergency situation - it would not be possible to seek DNAR authorisation or an Advanced Directive, and the Paramedics would attempt resuscitation (and indeed might be seen as neglecting the patient if they did not do so). In other circumstances, such as when
the patient is in a Care Home, such an order will be more clearly set up with the patient's and/or next-of-kin choice. (When a patient dies suddenly at home, irrespective of age the death will usually require investigation and a Coroner's report be issued).
I have attached the XXY CCG's own DNAR Policy for your information. Since your interest seems to lie in the area of end-of-life care and DNAR decisions generally not just in one situation, you might wish to consider addressing your questions to the NHS at national level, perhaps to NHS England, which has responsibility for end-of-life strategy.

Response no 5
Dear Mr Stone,
XXX CCG policy relating to End of Life Care
Thank you for contacting the CCG regarding our policy on End of Life Care and related issues.
The CCG does not have a position on precisely how the GP should respond faced with the scenario described. GPs. We would expect that GPs would respond to these complex clinical and ethical questions by fully involving the patient and family members and
respond in light of the particular clinical and social care circumstances of the case and in line with existing clinical and legal guidance including that relating to resuscitation. The CCG does not have Community End-of-Life Death Policy which explicitly makes the
distinctions described.
XXX is a positive outlier in terms of patients dying in their usual place of residence. We sit above the national average and the CCG's aim is to ensure that people are dying in their preferred place of care. There has been a review of end of life services undertaken by the
CCG and we currently have a steering group to look at redesigning the pathway for patients in the last year of life working closely with MacMillan to deliver individualised, community based care that is proactive rather than reactive to patients and carers needs.
Patients have a fundamental right to be involved in decision making relating to their care including discussion about resuscitation status. GP's and other community based health workers are increasingly involved in advanced care planning of vulnerable, frail and elderly
patients to ensure individual preferences are discussed. National gold standards framework (GSF) meetings are held by the majority of XXX CCG member practices quarterly. The aim is to proactively identify patients that are potentially in the last year of life and discuss these in a multi-disciplinary professional setting. Unfortunately there will always be unexpected or sudden deaths which we can not plan for. By focusing efforts of patients most at risk and ensuring these patients both in care home settings and in the wider community have advanced care plans in place we can continue to ensure more
patients are dying where they choose.

Response no 6
Dear Mr Stone
Thank you for your email dated 11 August 2014 regarding End of Life.
In response to your query around whether our CCG has an 'End of Life Death Policy' I can confirm that we do not have one of these in place. We do however recognise the issues around DNARs including transferability and we are reviewing this as part of our End of Life
Strategy 2014-2016.
Thank you for your comments, we shall ensure that this issue is discussed at a future End of Life Accountable Care Partnership Meeting.

Response no 9
1 How would Alan's GP, answer his question(s)?
The CCG is not able to respond to this question as it is not responsible for commissioning GPs.
2 Does your area have a "Community End-of_life Death Policy"?
No. As a CCG, and hence not a provider of clinical care, we do not have such a policy.

Response no 19
Dear Mr Stone
Further to your email below we confirm that we are not taking this forward as a Freedom of Information Act request.
All CCGs must abide by current legislation and are not permitted to invoke "local" alterations. Any changes to the current legislation around End of Life Care and the associated issues would need to be instigated at national government level. It is not a local issue to be commented on by individual CCGs.
We therefore regret that we are unable to offer a formal response to your comments.
Best wishes

Response no 29
Dear Mr Stone,
I am writing as Clinical Lead for EOLC at Ourtown CCG, in response to your email of the 6th August. You have raised issues that we are familiar with in EOLC that are being addressed nationally and also at a local level.
To answer your more specific question about the 'S1 statement', there is no statement such as this at the moment, but we are acutely aware of the concerns around expected death vs non- expected death, as well as the issues around ADRT.
Locally we are working to the national guidance in 'One Chance to get it Right'. As a CCG we have monthly steering group meetings with representatives from the local hospice, community nursing, carers group, secondary care, primary care, ambulance service, out of hours and commissioners. I feel this gives us a well-rounded group to take this work forward.
Yours sincerely,

Note to DIC readers - 'the S1 statement' features in my proposed solution to question 2, and it is the first of the two here:

There is only one obvious solution to this one, and it simply involves GPs recording prominently in the patient's (home-located) medical notes, the situation regarding the likelihood that 'if the patient died a natural death' the death would subsequently be certified by the GP.

The situations and the appropriate notes, are pretty obvious:

'I (the GP) would no longer be surprised by the natural death of this patient, but I would need to attend post-mortem before deciding whether to certify the death'

followed at a later stage of clinical deterioration by;

'I (the GP) will now certify any death which is not apparently unnatural, even if I am unable to attend post-mortem'.

I have posted the 'solution' elsewhere on DIC, but if I look it up all of this text will disappear - I'll add the link later.

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mike stone 19/02/15

It turns out my memory was letting me down - the 'solution' I mention above was posted at:

but it really makes much more sense to get the survey write-up from me by e-mail, as the survey write up explains it much better !

I also have a composite PDF of a series of BMJ 'rapid responses' which I've made covering Mental Capacity Act, end-of-life and some post-mortem issues for death at home: if anybody wants that one, e-mail me. I look at issues such as the conflict between 'patient confidentiality' and section 4(6) of the MCA, etc.