A Submission to the Ministerial DNACPR Decision Oversight Group
There is currently work going on to improve the behaviour around DNACPR decision-making, being led by a Ministerial Group. So far as I can see, family-carers who have views on DNACPR but who are not already involved-with certain 'organisations' which have been selected to provide feedback, have not been invited to provide their views. So I'll written some feedback about DNACPR in the attached PDF, and by e-mail and Twitter/X I will be pointing the ministerial group and its members at my piece. I have no great expectation that my feedback will be read, and even less expectation that it will create any change - but, all I can do is to try.
I would add to this feedback, something I've written but which isn't in the PDF - my piece at:
https://www.dignityincare.org.uk/Discuss-and-debate/download/474/
and in particular what I wrote on pages 11 and 12 in that PDF. Basically, 'If the clinicians refuse to change, then patients and relatives need to prompt change by 'challenging' the clinicians'. I urge people to read the PDF, which can be downloaded from the link above.
The PDF attached here, is my usual mixture of analysis of, and vexation with, what patients and relatives see if we read the contemporary 'guidance' about CPR/DNACPR.
The vexation which is the simplest to express, is this:
A family-carer during End-of-Life-at-Home, could be forgiven for reading what the BMA et al write about CPR, and thinking '... they seem not to have noticed something obvious - if my loved-one seems to have arrested while I am the only person with her, then there isn't a clinician present to make a decision about CPR/DNACPR'.
While writing my PDF, I found a really useful sentence in the Care Quality Commission's 2020 interim report. The sentence is essentially identical to a sentence which I published here on dignity in Care back in 2017, and the CQC wrote:
A best interests decision about CPR is unique to each person and is to
be guided by the quality of future life that the person themselves would
regard as acceptable.
I invite readers to ponder: if my dad collapses, I call 999, and after 999 paramedics have arrived they say 'he is in cardiopulmonary arrest', then who of the people present (the paramedics or me) is more likely to understand '[what is] the quality of future life that the person themselves would regard as acceptable'?
Associated files and links:
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Some feedback to the Ministerial DNACPR Oversight Group
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The solicitor Ben Troke, who has an interest in the Mental Capacity Act (MCA), has written a book ‘A Practical Guide to the Law of Medical Treatment Decisions’ (Paperback: 978-1-912687-89-3). We are told that ‘Demystifying the law is Ben’s passion’, and I can recommend Ben’s descriptions of Best Interests in his book (I have not read the sections on ‘detention’).
I have also attempted to explain MCA best interests without using ‘legalese’, in my PDF at:
Invariably, when clinical-bodies write about MCA best interests, they imply that there is an identifiable ‘decision-maker’. When a practice direction called PD9E was withdrawn, our courts decided that clinically assisted nutrition and hydration (CANH) could be withdrawn without permission from the court, if all of the clinicians and all of the ‘family’ agreed that withdrawal of CANH would be in the patient’s best interests. Despite the fact that this is easy to describe - ‘when everyone agrees about the best-interests decision’ covers it – some guidance, which from memory was jointly published by the BMA and the RCP, insisted that the person making the best-interests decision is the doctor who originally prescribed CANH (or who has ‘continued’ the CANH). An argument that ‘duty of care’ places doctors in charge of MCA best interests strikes me as being flawed, but it is clear that in practice the process of withdrawing CANH and providing the follow-on-support after withdrawal will require the involvement of clinicians. Logically, that isn’t quite the same as arguing that whoever prescribed the CANH controls best-interests as to whether CANH should be withdrawn – but, it is clear that the clinicians who will in practice actually withdraw the CANH do need an MCA best-interests defence for doing that.
On pages 106 and 107 of his book, Ben Troke suggests a rule of thumb to identify who is ‘the’ best interests decision-maker. Ben uses the example of a surgeon, who will need a defence against an accusation of GBH.
Ben then moves on, and points out that in reality it probably doesn’t matter who ‘the decision maker’ is (and logically, by extension, if there is an identifiable ‘decision maker’) - clinician, relative, attorney or deputy – because Ben writes ‘any substantial dispute must be referred to the Court of Protection’. Technically, while I suspect the guidance for doctors probably increasingly stresses ‘if there is a serious dispute, refer it to court’, I think the Act actually says that a dispute ‘can’ be referred to court, as opposed to Ben’s ‘must’ be referred to court.
However, almost nothing of the above, works well for CPR/DNACPR when the patient/loved-one is at home. We don’t know in advance of a cardiopulmonary arrest, who will be present at the arrest: but it is much more likely to be a family-carer who lives with the dying person, than it is to be the patient’s GP. As it requires an essentially instant decision to either attempt or withhold CPR when the patient arrests, it seems absurd to suggest that a GP who isn’t present ‘is the decision maker’. It is even more absurd, to suggest that the decision could be referred to court while the patient is in arrest. As I have recently made clear in my writing: you can only attempt or withhold CPR, IF YOU ARE PRESENT WHEN THE PATIENT ARRESTS. And nobody 'prescribes' attempted CPR.
There is something else I wish to discuss. The Guidance about CPR which is issued by clinical bodies, such as the BMA/RCN/RC(UK) guidance about CPR decision-making, seems to have a distinct category for ‘when the benefits and burdens of CPR are finely-balanced’. I don’t like this categorisation.
My reasoning, is that the first step in consideration of CPR when there is the time to properly consider CPR, which means during ‘planning ahead’, is to establish the clinical factors: the existing clinical situation of the patient, and the probability of the various post-CPR outcomes. If it is absolutely clear that CPR could not restart the heart and breathing, then we are in ‘clinicians do not need to offer an intervention which could not work’ territory. But if there is ‘a fine balance of benefits and burdens’ then there are benefits and burdens to be considered, which should be assessed either by the patient, or as part of genuine MCA best-interests decision making. Which is exactly the same, so far as I can see in legal terms, as when there are benefits and burdens which are less ‘finely balanced’.
Putting that another way, the law seems to me to go:
First establish all of the clinical information, then consider this information along with other things during either Informed Consent or MCA best-interests decision-making.
It doesn’t matter, what the ratio between ‘burdens’ and ‘benefits’ is – if ‘quality of life’ is part of the consideration, then we are not in a special legal situation: if CPR is being offered, and that has to be decided FIRST, we then move on to informed consent or best interests. You can’t have the second stage, which shouldn’t take place unless CPR is ‘on offer’, influencing whether CPR is on offer.
Alex Ruck-Keene, has allowed two lawyers, Richard Charlton and Bharati Gidoomal, to post a guest blog titled 'Guest post – the risks of ReSPECT' on his website:
https://www.mentalcapacitylawandpolicy.org.uk/guest-post-the-risks-of-respect/
Charlton and Gidoomal tell us:
'Unfortunately, our access to records in care and nursing homes, and to hospital records in our representation of clients in the Court of Protection proceedings has demonstrated that this form (the ReSPECT form) also creates the possibility for the same abuse as the DNACPR form (Do Not Attempt Cardiopulmonary Resuscitation), with unfortunately even wider application. This is because ReSPECT forms cover all forms of treatment not just DNACPR.'
They finish their blog with this:
'...relatives, friends, and professionals should ensure that any ReSPECT form that exists, especially for a resident in a care home, nursing home or in a hospital, is properly created. We do not know how many other unlawful ReSPECT forms are out there which could have potentially tragic consequences.'.
Charlton and Gidoomal are describing ReSPECT forms which are completed unacceptably, whereas I object to fundamental aspects of the form, notably whose signatures are on the form, who completes which sections, and in general I object to the way that 'the form is controlled by the clinicians, and doesn't truly represent the involvement of family-carers, legal proxies, etc'. I don't know if Charlton and Gidoomal believe that the nature of the form, creates some of the problems they describe: but it would certainly make it easier for 'relatives, friends, ... [to] ensure that any ReSPECT form that exists, especially for a resident in a care home, nursing home or in a hospital, is properly created.' if the form was redesigned as I've suggested, to bear the signatures of many non-clinicians.
I'm not 100% sure, if Charlton and Gidoomal would prefer a separate form for CPR/DNACPR as I would - and I have recently proposed a fundamental change to 'DNACPR forms' in my piece at: