Is speaking awkarness to authority a role for Champions ?
The recent post with an attachment describing what Dignity Champions should be doing, attracted my interest - unusually I am not involved in caring for anyone at the moment, either professionally or 'lay', but I am involved in a debate about the materials various bodies are publishing for End-of-Life Care and Cardiopulmonary Resuscitation.
My main 'problem or objection', is that the current clinically-authored guidance is offensive to relatives of EoL patients, especially live-with relatives of patients who are in their own homes, because it seems to default to 'we can distrust relatives' as opposed to the more logically correct but less restrictive 'relatives are not usually clinicians'.
As part of my efforts to alter clinical behaviour so that live-with relatives are treated as a full part of a patient's 'care team', I have just sent the attached (I hope it attaches !) PDF to the country's NHS Ambulance Services, requesting that their Leads for AS involvement in EoL situations answer a few questions for me.
I would be interested, in any comments here on this site, about whether my 'flow of logic' in the attachment, appears to be correct or flawed ?
I'm especially interested to know, how many people think that a written ADRT refusing future CPR is 'legally binding', but that a face-to-face verbal refusal, made during the clinical situation which leads to the arrest and directly to a clinician involved in that care and subsequently present at the CPA, is 'not legally binding' ? (assuming the patient retains mental capacity until the CPA occurs),
Regards, Mike Stone
I am also very interested in this one:
What is the difference between a patient saying to his GP 'I've had enough of this - if I arrest from now on, I forbid CPR' and the patient saying to a relative who he is living with 'I've had enough of this - if you think I have stopped breathing, then don't call anyone and let me die in peace' ?
Associated files and links:
For AS EoL Leads from Mike Stone.pdf
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Two problems, here.
I should have typed awkwardness with the 'd'.
More to the point, the site refuses to let me attach the file I needed to, which makes the entire thing pointless !
I will need to try another approach, less satisfactory, if I cannot attach the necessary file.
I have an update, on part of this one.
I have been very annoyed that local end-of-life guidance within England, has been increasingly including this, or the equivalent, within it:
'A valid and applicable written Advance Decision (ADRT) refusing cardiopulmonary resuscitation (CPR) is legally binding, but a verbal refusal of CPR is not legally binding (but must be taken into account)'
This is really annoying - it is a fundamental confusion of the principle of Informed Consent (which can equivalently be described as the principle of Considered Refusal), combined with a misunderstanding of the Mental Capacity Act (MCA).
Put simply, a written Advance Decision, is merely an elaboration of a refusal in writing: and if the refusal lacks clarity, you cannot ask the document 'to explain the refusal more clearly'. But if the patient can talk to you, he or she can explain to you his or her intended instruction, as recorded on the document - so, however you look at it, a verbal discussion with a person, is better than just reading something they have written. It is quite difficult to label a properly-elaborated and properly-understood verbal refusal of CPR (it cannot be a valid ADRT for the purposes of the MCA), and it does not involve making a section 4 MCA best interests decision, either (because the clinician is simply following the patient's decision to refuse the treatment) - but the logic of this, is pretty obvious !
In my 'Christmas update' to Juliet Spiller, a consultant contact in Scotland, I commented on this issue, and Juliet eloquently explains the basic issue:
'For what it's worth I would be amazed to hear any clinician saying that a
competent current verbal statement refusing CPR (or any treatment for
that matter) can be overridden by a previous written directive. That makes
no clinical or ethical sense to me and I do wonder if something has been
"lost in translation" between you and Claud along the way. The case you
give below is a "no-brainer" and I can't accept that any clinician could
justify doing anything other than act on their current understanding of the
patient's competent refusal which is the verbal one.'
This is the 'case I gave below' (marked with 'START' and 'END' for clarity):
An EoL patient is visited at home on a Monday by two district nurses (DN1 & DN2). The patient's wife is also present. The patient wants to write an ADRT refusing CPR under certain circumstances, and he explains this to the DNs, and asks them 'How do I word this, so that any clinicians who read it, will understand what I have just explained to you about the circumstances under which I would refuse, or accept, CPR ?'.
The two DNs come up with a form of wording, he writes an ADRT using that form of words, and he gets both the DNs and his wife to witness it.
Two days later on the Wednesday, his GP and two different DNs (DN3 & DN4) are visiting him. Again, his wife is present. He shows them the ADRT and asks the 3 clinicians to tell him 'when you read this, under what circumstances am I refusing or accepting CPR ?'.
These 3 clinicians, come up with an answer that differs from his intended instruction, in some respect - so he explains to these 3 clinicians exactly what he explained to DN1 & DN2, and asks them 'So, how should I alter the wording, in order that clinicians who read my new altered ADRT understand that I am refusing/accepting CPR under the circumstances I have just explained to you in our detailed discussion, bearing in mind that the current wording is obviously inadequate ?'.
The GP, DN3 & DN4 put their heads together and create a new form of words, which they think should lead other clinicians to understand his refusal and its exceptions, as they understand it in the light of their detailed discussion with him. These new words are written on a new ADRT, which he is about to sign, but he suddenly arrests before he has been able to sign it.
QUESTION: we now have:
1) A signed and witnessed ADRT, but the GP, DN3 & DN4 are aware that their 'prima facie interpretation' of its wording, is not what the patient intended its words to indicate to them (despite those words having been formulated by two other clinicians, DN1 & DN2).
2) A new but unsigned ADRT, which has wording on it formulated by the GP, DN3 & DN4, to attempt to convey the understanding of the patient's refusal of CPR which they have just gleaned in a detailed verbal discussion with him.
How on earth, can the apparently valid original ADRT be the instruction re CPR to the GP, DN3 & DN4, when the patient has just explained to them that their interpretation of it was not the instruction he intended it to convey, and when they have just created a form of words intended to convey that instruction (which they do now understand, because of the discussion) to other clinicians on a new/altered ADRT, be the thing that guides their response to his CPA ?
It is obvious, that they must act on their understanding of his refusal - and that was gleaned not from the original ADRT (awaiting replacement or modification) but it exists in their minds (because of the DISCUSSION) and is about to be described in their words on the new ADRT for the benefit not of them, but of other possible readers of this new ADRT.
I used that argument, Juliet's eloquent words, and a document of mine describing a DNACPR Justification Hierarchy, to send a question about this issue to hospitals, etc, early this year. The hospitals have failed to respond, but one of the groups I contacted was the UK Clinical Ethics Network.
The UKCEN homepage is:
It tells us that one of UKCEN's main purposes is to 'Provide up to date and reliable information on ethical issues that commonly present to clinical ethics committees or arise in clinical practice.'
Anne Slowther is the Chair of UKCEN, and she is with Juliet and me, about this issue: the validity hinges on how well the refusal is understood, not on whether or not it has been written down: Anne sent me this e-mail (note that Anne is using ART to mean Advance Refusal of Treatment):
Dear Mr Stone
Thank you for your email enquiry to UKCEN regarding advance refusal of treatment and DNACPR.
Please be aware that this is not a response on behalf of UKCEN but my personal response as an academic clinical ethicist. UKCEN provides support for UK clinical ethics committees but does not have a remit to give opinions on behalf of individual CECs or to produce Network position statements. Therefore I am unable to speak on behalf of UK CECs on the point you raise.
My understanding of English law is that a contemporaneous refusal of treatment, even life sustaining treatment, by a person with capacity must be respected and that this refusal does not have to be in writing. The MCA addresses situations where a person with capacity can withdraw a previous ART, or where a previous written ART is considered invalid because of the person doing something that is inconsistent with the decision remaining his fixed decision. (section 25.2) The Act also states that an ART is not applicable to the situation if at the material time the person in question has capacity to give or refuse consent to it (25.3).
Individual clinical ethics committees provide support and advice on ethical issues relating to patient care in their own Trusts but any question relating to law (as with the MCA) would be directed to the Trust's legal department, thus while a CEC may advise on a particular case where an ART or DNACPR order was involved they would not comment in general terms on the legal or ethical frameworks. It may be that Trust legal departments would be better placed to answer your query. If you are concerned that this is a national problem regarding clinical practice then it may also be more effective to contact the Department of Health directly.
Trust legal departments almost always refuse to answer questions about this, the DH cannot resolve the issue on its own - wha tis needed, is a proper discussion and debate of the problem !