Comments on some NHS Advance Care Planning Guidance about the principles of ACP
FORENOTE: the PDF which you can download, is the text which you can read here but with bolds and a little extra added to it.
I am going to make some comments on a ‘high-level’ piece about the principles of Advance Care Planning (ACP) which has just been published: ‘The Universal Principles for Advance Care Planning has been jointly published by a coalition of the partners listed above, in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’ (2021).’
It is Gateway ref: B0845 and we are informed that the most-recent version will be at:
www.england.nhs.uk/eolc/resources/
There is a lot to like about this publication, but I also have some significant issues with it – one of my issues, being that a concern about DNACPR decision-making has, in this piece, become rather ‘submerged’ within wider Advance Care Planning. There are issues with cardiopulmonary resuscitation (CPR) which definitely need to be addressed separately from ACP more generally.
I will start by commenting on a form of wording – here on page 4 – which has always annoyed me:
‘All discussion with the person should convey a sense of ownership of the process.’
As a patient, what am I being told? Are you telling me that the patient does own the ACP process – or are you telling me that the patient does NOT own the ACP process, but should be misled into believing that he/she does own the process? Because if the second – well, being led to believe that you ‘own something’, if it subsequently it turns out that you do not own it, is unacceptable ‘duplicity’ of the worst kind in the healthcare context.
My first point which is about the ‘overall coherence of’ the guidance, is that we are told that ACP involves a patient who can at the time make his or her own decisions (a capacitous patient) – on page 6:
‘ACP is a voluntary process of person-centred discussion between an individual
and their care providers about their preferences and priorities for their future care,
while they have the mental capacity for meaningful conversation about these.’
This leaves an enormous hole: what about ‘planning ahead’ which does not take place until the patient has lost mental capacity? Wales has tackled this problem, by introducing and using the concept of FUTURE CARE PLANNING (FCP) which covers planning whether or not the patient is capacitous – a paper by Taubert and Bounds explains FCP:
https://spcare.bmj.com/content/bmjspcare/early/2022/01/31/bmjspcare-2021-003498.full.pdf
I BELIEVE THAT ENGLAND SHOULD PROMPTLY MOVE TO FUTURE CARE PLANNING INSTEAD OF ADVANCE CARE PLANNING.
The guidance is clear about what it considers to be an ACP discussion – we are told on page 6:
‘Advance Care Planning discussions can occur over time, between people and those important to them, such as family, friends, people in their communities as well as with health and care professionals.’
So, it seems that a relevant conversation between a person/patient and a relative or friend is definitely part of ACP – which must presumably be true even if no clinicians are involved. It must be true even if no professionals are aware of the discussion – therefore the ‘discussions within the family’ mentioned by a patient’s wife in a Journal of Medical Ethics paper I contributed to, do count as ‘ACP’. A link to the JME paper can be found in my piece at:
I am less happy with this, on page 9:
‘The person agrees the outcomes of their advance care planning conversation
through a shared decision making process in partnership with relevant
professionals.’
The ‘outcome of’ a conversation – an ACP conversation in this instance – is ideally mutually-improved understanding: information and ‘views’ will have been exchanged. Unfortunately, it is possible – and definitely does happen during ‘healthcare conversations’ – that misunderstanding will occur: each of the parties involved, believes that the conversation ‘meant a different thing’.
I note that suddenly, we have had this ‘outcome of’ term introduced, and the family, friends, etc have disappeared: this ‘outcome of ACP conversations’ seems to only involve the patient and ‘relevant professionals’. WHY? And, it is worth digging-into the phrase ‘shared decision making process’ in that sentence above as well: almost none of the documentation which the professionals create, contains ‘decisions’.
From now onwards, I hope it will become clear, why I wrote earlier that CPR involves issues which mean it needs to be specifically-addressed, separately from FCP/ACP more generally.
When a patient has thought about ‘ACP’ and is talking to ‘relevant professionals’ (usually doctors and nurses in the context of healthcare) the patient will want to know which treatments would be offered. Then the patient might express a view on those interventions – would she want them, would she refuse them, is she uncertain and therefore doesn’t want to ‘plan ahead’ beyond saying ‘I would want to decide at the time’. Many of these ‘future options’ which would be available to a capacitous patient (or would be considered during best-interests decision making) are delivered ONLY BY doctors and nurses: surgery, skilled nursing-care, etc. That is NOT TRUE for CPR – CPR is taught as first-aid, so many friends, relatives and family-carers can attempt CPR. A person could have discussed the future with his family, and indicated that he would always want CPR to be attempted: a relative could agree to always attempt CPR, and/or to always phone 999 and try to get paramedics to attempt CPR. So, a ‘patient’ and a family-carer capable of performing CPR, could ‘agree the outcomes of their advance care planning conversation through a shared decision making process’ WITHOUT ANY PROFESSIONALS BEING INVOLVED. It is worth pointing out, that DNACPR is not ‘a treatment’ – DNACPR is the withholding of a treatment: as such, a relative who could not perform CPR, could ‘agree an outcome’ with the person (who I often describe as ‘the loved-one’) of ‘trying to prevent CPR from being attempted’ if the person made it clear ‘I would NEVER want CPR if my heart had stopped beating’.
Page 6 of the guidance, tells us the following:
‘The outputs of these discussions may include one or more of the following:
• An advance statement – of wishes, preferences and priorities, and may
include nomination of a named spokesperson
• An Advance Decision to Refuse Treatment (ADRT)
• Nomination of a Lasting Power of Attorney (LPA) for health and welfare who
is legally empowered to make decisions up to, or including, life sustaining
treatment on behalf of the person if they do not have mental capacity at the
time, depending on the level of authority granted by the person.
• Context-specific treatment recommendations such as emergency care
and treatment plans, treatment escalation plans, cardiopulmonary
resuscitation decisions, etc.’
Of that list, a patient can entirely independently of any other person, do the first (create ‘an advance statement’). The second is something which a person can do independently of any other person, except for the involvement of a witness to the person’s signature on a written document (obviously a verbal ADRT, does require a listener!). The third involves the person and his/her chosen Attorneys. Only the fourth, necessarily involves doctors, nurses, etc. And if ‘planning ahead’ is made when an end-of-life patient is at home, and other people are sharing that home, then the crucial first-step of any planning is between the patient and the people living with him [who in that situation will often be ‘family-carers’].
Things such as the ReSPECT form, ‘DNACPR forms’ (by which I mean forms signed only by clinicians – so I am not including ADRTs refusing CPR) and other documents which are referred to in the fourth item on that list, typically provide information. Sometimes the information is presented as ‘a recommendation’ but it is almost never ‘a decision’: the document would be ‘an instruction’ if its purpose were to convey ‘a decision’. An ADRT refusing CPR can reasonably be described as an instruction, and it is defined as being a decision.
It turns out – and this causes endless issues with how various documents are described in guidance, etc – that it isn’t really possible [except for a written ADRT] to record a DNACPR decision in advance of a cardiopulmonary arrest, unless a court ruling is involved.
On page 12 of the guidance, there is a list under the title ‘Therefore we should see that…..’ and three of the things in the list are:
‘The outcomes are based on the person’s preferences and priorities about their future care, informed by the relevant professionals’ knowledge and experience of the condition(s) and its likely future course.
Health and care workers involved in the conversation recognise that the person with mental capacity has a right to make decisions to refuse treatment that health and care workers do not agree with or may think unwise. In the same way, if a decision thought ‘unwise’ by others is the basis of a valid and applicable ADRT made while the person had capacity and which they have not withdrawn, this is legally binding.
Everybody involved in ACP understands that clinicians are not legally bound to offer treatments which they judge would not be of benefit , including cardiopulmonary resuscitation, chemotherapy, oxygen, intravenous antibiotics, etc. but they must discuss and explain this to the person or, if the person lacks capacity, with those important to them. In the infrequent instances where this isn’t discussed, the reason needs to be clearly documented. These must be individualised judgements, and not blanket decisions based on age, disability, care setting or background. A second opinion should be offered in the event of a disagreement.’
Traditionally, the third of those has usually turned into what amounts to ‘if clinicians believe that CPR would be futile then CPR should not be attempted’. The meaning of ‘futile’ has always been ‘a bit ‘slippery’’ but I think by now – 2022 – we should be writing ‘if CPR could not restart the heart and breathing’ instead of ‘if CPR would be futile’. Alex Ruck-Keene, a barrister involved with the MCA, wrote in our JME paper:
‘If there is a situation in which CPR would simply not work to restart the heart or breathing, then the paramedics would be under no duty to attempt it, as there is no duty to seek to carry out a futile procedure.’
Ben Troke, a solicitor with expertise in the MCA, writes in his recent book ‘A Practical Guide to the Law of Medical Treatment Decisions’ (on page 133):
‘I tend to think of ‘futile’ as meaning there’s no benefit …’
If we accept my position that in 2022 we should be using ‘if CPR definitely could not restart the heart and breathing then not offering CPR would be justifiable’, then it turns out that IN ADVANCE OF a cardiopulmonary arrest most honest doctors would admit they cannot meet that test. Almost always, a doctor can only say ‘I believe that a future attempt at CPR would be ALMOST CERTAIN to not restart this patient’s heart’. AT THE TIME OF an arrest, it would sometimes be possible to decide with certainty that CPR couldn’t work: decapitation or a massive chest injury come to mind.
It might be possible, rarely, to say with great confidence that future CPR could not work – I suppose if it were certain that a patient had extremely-fragile ribs, it could be asserted that chest-compressions would not work [but perhaps electrical methods might work].
It isn’t obvious, how the patient’s ‘wishes and preferences’ can be at the heart of the decision about CPR, if the clinicians refuse to offer CPR ‘because we think it would fail’. And – if it would fail as the clinicians predicted, then whether or not CPR were attempted, the patient would be dead.
We can also have a peculiar situation, when the patient is at home. It is perfectly possible to conceive of a situation when a GP might be convinced that CPR couldn’t be successful, but the patient was still mobile. In that situation the GP might ‘make the patient DNACPR’ even if the patient wanted CPR to be attempted. If the patient arrested at home, 999 paramedics would probably not attempt CPR. But, if this patient collapsed and arrested in the street, walking to a local shop, it is very likely that any attending paramedics would attempt CPR.
I believe the time has come, for the NHS to change its position to ‘CPR should be attempted, if while capacitous [and informed of the likely outcomes of CPR] the patient had asked for CPR to be attempted’. And I sincerely hope, that people who are in arrest, do not feel CPR while it is being attempted.
I outlined why I believe the change is necessary a few years ago:
If we do change, then it must be for everyone: on grounds of ‘fairness and consistency’ if CPR is to be offered when the clinicians predict it would not work, then that offer must be made to all capacitous patients.
As I wrote in the Journal of Medical Ethics paper, decent end-of-life care requires everyone supporting the patient to be working together:
‘When my mother died about 10 years ago, I might have found myself as a relative trying to prevent a 999 paramedic from attempting CPR, but in the event, I found myself being ‘confronted by’ 999 personnel who seemed unable to understand why when my mum died at the end of a peaceful 4-day terminal coma, I had NOT felt the need ‘to phone someone immediately’. This prompted me to embark on an investigation into end-of-life (EoL) guidance, protocols, mindsets and laws, which revealed to me a situation I can, at best, describe as urgently requiring improvement, especially but not exclusively for EoL-at-home, and which, in complex and confusing situations, protects professionals at the expense of damaging relatives and, sometimes, even patients.
From my family carer perspective, this situation has to change. And, the direction of change must be one which improves the support given to patients, by promoting integration between everyone, lay and professional, involved in supporting patients. This ‘model’ requires ‘us and us’ as opposed to ‘us and them’: it emphasises teamwork between family carers and the clinicians who are in regular and ongoing contact with the patient, and it replaces ‘multidisciplinary team thinking’, with genuine professional-lay integration.
Anyone can listen to a patient—provided you are present to listen: if only a relative is present, only the relative can listen. Often it will require a clinician, such as a 999 paramedic, to confirm that a patient is in cardiopulmonary arrest, but the family carer who called 999, is the person most likely to know if the patient would have wanted CPR. Put simply, the clinicians are the experts in the clinical aspects, and the family and friends are the experts in ‘the patient as an individual’.’
We need to all work together. We need more stress on involvement, and less stress on who is a professional and who is a relative or family-carer. We need more stress on the understanding within the group of people who are in ongoing-contact-with the patient, and less stress on documents which attempt to impart SOME OF that understanding to ‘external’ clinicians.
Written by Mike Stone, March 2022
Twitter @MikeStone2_EoL
Associated files and links:
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Comments on some NHS Advance Care Planning Guidance extended PDF version
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