The SCIE Robyn and Anne scenario compared to my Alan and Liz scenario: the essential difference between 'informed consent' and 'best interests'
The SCIE Robyn and Anne scenario compared to my Alan and Liz scenario: the essential difference between 'informed consent' and 'best interests'
I have been discussing an online e-learning tool which is on the SCIE website, with the SCIE's Mental Capacity Act chap. There is a scenario inside the tool, which features Robyn and Anne - it poses very much the same question (although this question isn't posed inside the SCIE e-learning tool) as is posed by my Alan and Liz scenario.
The SCIE MCA e-learning tool is at:
http://www.scie.org.uk/mca/e-learning/
My Alan and Liz scenario can be found at (where it is a little way in, as 'QUESTION 1'):
I have also asked the same question, slightly differently, in a piece on BMJ:
http://www.bmj.com/content/350/bmj.h2877/rr
Theses are the essentials of the Robyn and Anne scenario, as presented in the SCIE learning tool:
In brief, we are told that Anne is Robyn's partner, and Anne made Robyn her welfare attorney a year ago, after Robyn's brother was diagnosed with cancer. Anne and Robyn talked about CPR - we are told 'we both agreed we didn't want to be resuscitated if we had a long-term condition like dementia' and also 'Anne instructed Robyn that she did not want to be resuscitated, if this was ever an option'.
Then Robyn tells us 'Three weeks ago, Anne suffered multiple injuries, including a severe head injury, after being hit by a car while cycling in the city'.
The tool then tells us that 'Robyn should make sure that any decision she makes is in Robyn's best interests'.
This is my 'issue' with this, as I explained it in my comment to Hugh:
'It makes no sense, to imply - as this is doing - that Robyn 'would be making a best-interests decision' in this situation. Robyn is Anne's partner, her welfare attorney, and Anne has explained to Robyn 'that I don't want to be resuscitated, if this is ever an option'.'
Hugh commented:
'We do imply this, don't we? This is problematic, and I'll need to discuss.'
In response to Hugh's comment, I then added:
'The problem is the combination of two things you've included: Anne explained her refusal of future CPR to Robyn but you also made Robyn her partner, thus implying a level of ongoing contact which effectively means that Robyn 'would be as certain as it is possible to be about Anne's position re CPR' - and it is the uncertainty of 'working out the likely position' which distinguishes 'normal patient autonomy' from section-4 best-interests decision making.'
My own scenarios involve the same essentials: ongoing contact (in my examples, the husband explains to his wife that he is refusing attempted cardiopulmonary resuscitation, then the husband collapses and the wife is the person present when he collapses) and a sudden incident which takes the patient immediately from capacitous to incapacitous. Nobody could [reasonably] be any more certain than either Robyn, or the wife is, of the patient's refusal of the treatment - and that is true whether or not a written Advance Decision has been made [because Robyn, and the wife, would know about the ADRT, and either Anne or the husband would of course tell Robyn or the wife if the ADRT had been retracted].
This is clearly not 'making a best-interests decision' on the part of Robyn or the wife - it is 'following a clearly-understood decision expressed by the patient' and that is NOT 'making a best-interests decision' [it is just the normal 'patient autonomy' rule].
The idea - widely held, but confused - that 'the refusal has to be in the form of a written Advance Decision, because the treatment being refused is life-sustaining' is also incorrect: I do have the 'proof' already online, but I'll include it here anyway (at the end).
I've also explained this online, but again I'll explain it here - I can't see how this can be incorrect, when you THINK ABOUT the MCA.
The SCIE tool uses the wording 'Anne instructed Robyn that she did not want to be resuscitated'. An instruction, is an expressed decision - an instruction 'isn't vague' [like 'a preference'] and it is stronger concept than 'a wish'.
If you say to someone 'I'll have a cup of tea' you have 'made the decision'.
If you say 'I'll have a hot drink' you have expressed some sort of 'preference'.
English law has settled on the idea that if the patient has made the decision, and there is no reason to believe the decision has been misunderstood, or that the patient has changed his or her mind, then the decision has to be followed. The MCA's 'best-interests' decision-making describes something different - put simply, it involves 'working out what the patient would PROBABLY have decided, when the patient cannot decide and then tell us, IF THE PATIENT HAS NOT MADE AND EXPLAINED THE DECISION'.
Robyn [and the wife in my similar scenario] does not have any 'working out' to do - Robyn KNOWS (to a level of certainty, which is pretty-much as good as it ever can be in the real world - certainly to a higher level of certainty than is usually the case with a written ADRT which a court would judge to be valid) that Anne has refused CPR.
This is the crucial issue - 'how certain are you of the patient's refusal of the treatment ?'.
I have shown some survey answers in Poser no 11, in my 'Poser series' at:
The answers showed - and I have no reason to think the situation has got any better since my survey, and it might be getting worse - that there is a significant problem around 'whether professionals believe the word of family carers' and that the situation isn't at all satisfactory (it is a mess).
XXXXXXXXXXXXXXXXXXXXXXXX
Here is the proof (originally published on DIC April 2013), that a refusal of CPR is more legally-binding when face-to-face and verbal [and CRUCIALLY 'during a situation of ongoing contact'] than an apparently valid written Advance Decision which refuses CPR:
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):
START
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.
END
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.
Yours sincerely
Anne Slowther
Chair UKCEN
Trust legal departments almost always refuse to answer questions about this, the DH cannot resolve the issue on its own - what is needed, is a proper discussion and debate of the problem !