Autonomy and Safety
I was listening to someone who had visited a lot of care homes and then written a book, on the radio a few days ago. He summed up, in a single sentence, a huge issue/problem, with the way that the elderly, and also the terminal or dying, are treated. What he pointed out, was that:
'It is the children who chose the care home for their parents: and the children want autonomy for themselves, but they look for safety for their parents'.
This issue of autonomy versus safety, is a huge one: even trying to disentangle the two, leaves problems with each 'concept' on its own.
Professionals have mixed views about 'autonomy': on the one hand they often claim to be 'autonomous professionals', while at the same time being subject to extensive 'guidance' which restricts their freedom of action: frequently bemoaning the 'stupidity' of some of that guidance, if a disaster happens the first recourse for most professionals is 'that I followed our guidance properly'. Medical doctors wax very philosophical, about 'autonomy': in particular, they defend 'arguing against the decisions patients are making' on the grounds that 'even if mentally-capable, the patient isn't truly autonomous, and might be being influenced [by family, for example]' - curiously, during these 'philosophical discussions', medics are less keen to emphasise how they themselves are influenced by their own bosses, guidance, etc.
There is also a fundamental issue, in that decisions can either be made by one person (in which case, ideas about 'autonomy' can largely be ignored - actually, English law goes for the very simple 'mentally-capable people make their own decisions) or by some group of people (in which case, you do need to define the decision-making process: is it a vote, or what). I have skimmed those topics, at:
http://www.bmj.com/content/349/bmj.g4349/rr/760472
http://www.bmj.com/content/349/bmj.g4855/rr/761712
http://www.bmj.com/content/349/bmj.g4349/rr/759994
It is clear, from many media reports and also various court cases, that when faced with a conflict between patient autonomy and 'safeguarding', most professionals naturally go for 'safety' - at its simplest, most professionals go for the easier-to-'measure' 'keeping people alive' position. But it could be argued, that those children should not be looking at a care home for their parents, and thinking 'does this look 'safe' - it could be argued, that they should be thinking "If my mum comes here, will she look forward to waking up in the mornings". The correct question might be, not 'are you [mum] safe here', but 'are you enjoying being here'. 'Autonomy for me, but 'safety' for you', isn't exactly consistent, is it ?
This issue presents itself in a slightly different way, if mentally-incapable adults are being considered: then the quite tricky to address questions, become things such as 'If it is obvious that someone is really suffering, and we can't stop that, should we let the person die ?' - the court case in the file attached to this one, is a case like that:
The technical term for that, is 'a best interests decision' - and there is a lot of uncertainty, about this idea of 'best interests'. Two different doctors, or two different lawyers, can have very different opinions, about 'what is in the patient's best interests'. I cannot really argue, with the existence of some uncertainty about 'best interests' - but, as I stated in the file:
But there is conceptual difference between 'the law isn't clear about this' and 'the law could legitimately be open to differing interpretations' - if the latter is taken to its logical extreme, then any interpretation would be valid (so, nobody could actually breach the law, whatever the person decided to do). Although I object to that 'anything goes' possibility, I would accept it as 'a possibility' until people change it to 'We professionals can have differing legitimate views about the meaning of the law, but your lay interpretations are not valid in any event'.
'We professionals can have differing legitimate views about the meaning of the law, but your lay interpretations are not valid in any event' is not a position I, or many other laymen, will accept - as Sarah Morpeth commented
'... I have been patronised by a range of doctors during discussions of 'escalations of care' who have told me that it's best for me to have the 'burden of responsibility' taken off my shoulders. I actually think that the medical team should have the burden of responsibility taken away from them.'
This does seem to come down, to a 'power struggle': clinicians, who do not really understand what a patient 'feels about life, enjoys, etc' but who can see clinical conditions, do not like to give up decision-making 'authority' and are inevitably mainly influenced by how healthy or ill a person seems to be and clinical prognoses: but I, and many 'relatives', look instead at the question 'What would my dad want to happen, in this situation', something the family and friends 'understand' but the clinicians often do not.
'What would my dad want to happen, in this situation' can be regarded as 'second-hand 'autonomy''.
'Decision-making mainly guided by clinical prognoses' can be regarded as 'safeguarding'.
Frequently, these two approaches are in direct opposition to each other !
Some Points about the new BMA/RCN/RC(UK) Joint CPR Guidance
There is a new version of the 'Joint CPR Guidance' now published - you can download it from:
www.resus.org.uk/pages/dnacpr.htm
I am less than happy, with this revised guidance - and the reason, is connected to what I wrote above, when I commented 'This issue of autonomy versus safety, is a huge one: even trying to disentangle the two, leaves problems with each 'concept' on its own.'
The Joint CPR Guidance, fails miserably to 'properly disentangle' various concepts: for example, it muddles up the terms 'wish' and 'decision' [and also confuses predictions with decisions], but it is at its worst with this section, which appears at the end of section 16 of the guidance (page 26):
'As noted earlier, local resuscitation policies should make
clear how CPR decisions are to be communicated and who
is responsible for ensuring that this happens. In drawing
up a local protocol, involvement of all local healthcare
providers, in particular the ambulance service and outof-
hours service providers, is essential. Acceptance and
recognition of the protocol by the police and coroner or
procurator fiscal's office should be sought to ensure that
when a death occurs in the community with a DNACPR
decision in place, this is treated as an expected death.'
Now, almost nobody - which is to say, no area or regional post-mortem policy for end-of-life home death' - is currently 'correct and also perspective-balanced'. Almost everyone uses a concept of 'expected death' [and the far from satisfactory idea, that a death which isn't 'expected' is therefore 'unexpected/sudden'], but nobody has got this right. The only useful and correct way to define 'expected death', is as I defined it in a piece on the BMJ:
http://www.bmj.com/content/347/bmj.f4085/rr/654490
I wrote in that piece:
'In this context, expected has an obvious logical meaning: an 'expected death' is one which occurs after the GP has 'promised to certify even if I cannot attend post mortem' (with the safety provided by that promise, the coroner can hugely relax the investigative aspect of post mortem behaviour, effectively instructing suitably trained nurses/etc that 'unless the death was obviously unnatural, just arrange for the body to be removed, try to keep the police out of it, and do not pester grieving relatives').'
There is NO MENTION of CPR (cardiopulmonary resuscitation) in that definition of an 'expected death' - and it is quite obvious, that the concept behind 'expected death' is that some deaths are so 'predictable and imminent', that the police should be kept away from them [unless there is some clear indication of a murder having occurred]. Furthermore, although the Joint CPR Guidance isn't very clear about this point either, English law is very clear that a patient can refuse attempted CPR for any future cardiopulmonary arrest (CPA), however unlikely an arrest might be.
It is obvious, that the Joint CPR Guidance is deficient in mentioning 'expected death' without correctly explaining the concept, and incorrect to imply that the presence of a DNACPR decision can be used to indicate that a death 'was an expected death': the really quick way to see the absurdity of using a DNACPR as a proxy for 'expected death', is to realise that even if there were no clinical methods for CPR (in which case, obviously there could not be 'DNACPR decisions') the requirement for 'expected community death' would still exist.
The following is necessarily quite lengthy, but it really does 'need to out there somewhere', and I've decided to put it here. This - extracted from my 'One England One Law' report and my 'More Conversation Less Confusion' piece - explains both the fundamental problem with current 'expected death policies', and what seems to be the only logical and fair-to-everyone 'solution':
My survey, asked this question -
'Do your GPs, honestly believe that your region has a CPR/VoD policy,
which prevents the POLICE from behaving as if an 'early EoL home
death' is similar to the 'sudden death of a thought-to-be-healthy 25 yr
old', if the GP cannot promptly at tend post-mortem.'
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'.
The notes have to be 'known to the family' and available to relatives immediately post-mortem: if police, despite having found no actual evidence that a death was unnatural, and who will be retaining the body until the coroner is satisfied, start to imply [by questioning and/or behaviour] 'that because the cause of death isn't certain, the death
is 'de facto suspicious'', relatives must be able to counter with 'Why is an apparently natural death a surprise to you - when it isn't surprising to the GP ?'.
It isn't, as if there are not lots of deaths which fall into that first situation - a paper by Blackmore et al pointed explained this point:
www.endoflifecare-intelligence.org.uk/view?rid=116
Within the paper, the authors explain the complication of deciding what is or isn't 'an unexpected death', and they comment that 'it could be assumed, however, that referrals to the coronial service where no inquest and no post mortem were required were in fact not
unexpected deaths because a death certificate could be issued following a discussion between the clinician and coroner only,' - and if that assumption is made they came up with a figure of 22% of deaths as being 'unexpected', whereas if you include 'there was a
conversation with the coroner' in the description of an unexpected death, the figure for 'unexpected' deaths was 46%.
This is very much a 'T-Shirt issue' - I can assure you, that relatives who have experienced the way that the police tend to behave as if 'early EoL deaths' are automatically suspicious, instead of 'probably just a bit early, if there are no obvious signs of murder', are unlikely to consider that police behaviour is 'balanced and reasonable'.
There does seem to be, some misunderstanding, and perhaps conflation, about this issue around 'expected death'.
It seems to me, that some General Practitioners, 'think in terms of' end-of-life home deaths which they certify, and those which they do not certify. But that isn't the problem, if you are a live-with relative, the police become involved, and there is no record of the death being
'expected', in the sense of 'the GP has already promised to certify'. If the GP isn't there, the police do often behave far too 'suspiciously': although, of course, there is no collected data, to 'formally prove that'.
After the GP has appeared, which can take hours, the GP might well decide to certify such a death - but it is wrong for GPs to think that this, which you could think of as 'the GP sort-of-classifying the death as 'expected' retrospectively', is any sort of solution, to the problems live-with relatives face before the GP turns up.
And this issue does not even arise, in hospitals - so hospital doctors, will understand it even less well, than GPs (who, because the problem occurs when the GP isn't present immediately post-mortem but the police are, do not see this police behaviour first hand).
It should be easy to grasp, that the prediction that 'this patient will die in
72 hours time' must be subject to the usual uncertainties associated
with all forecasts of that general type: and in this case, that means the
clinician could not genuinely be surprised if the patient actually died
after 48 or 96 hours, instead of the 'best prediction' of 72.
When you apply this to 'expected' death, you can ask 'What is the time
period within which the death 'becomes expected' for the purpose of
policy writing ? Within how many days - 2, 7, 14, 30 or what ?'. There
are some reasonable boundary constraints: 'death within the next 2
days' is too short to be of much use to the relatives (in terms of keeping
the police out of things when the death occurs), and as GPs must have
seen the patient within the previous 14 days to certify without attending
post-mortem, anything longer than 'death within the next 14 days'
seems too long a period.
Or, you can use the model of a fixed probability of dying on each day,
with that same probability applying on every subsequent day if the
patient has not yet died. This model is easiest when thinking about the
absurdity of 'writing protocols which use 'expected death' as a sharp
demarcation for EoL behaviour', because the 'death within 14 days' definition is roughly the same as a 1-in-10 chance of dying on each day: so even if doctors could accurately forecast that (and they can't), how is a 1-in-10 probability of dying tomorrow, 'so very different in any real sense from a 1-in-11 chance of dying tomorrow' ?
Just for clarity: in England a doctor can 'certify' a death without attending post-mortem, if the doctor has visited the patient within the previous 14 days, OR a doctor can certify the death IF the doctor attends post-mortem [in which case the requirement to have visited within the previous 14 days does not apply] - so my two statements (above) which GPs would record, fit with the 'rules' for certification.
You could learn quite a lot, if all GPs recorded those two statements, and they were then analysed after deaths:
If everyone adopted a policy that GPs should record in patient notes, my two suggested statements, the statements themselves fulfill my 'fundamental and [relatively] unambiguous' criteria. The only real ambiguities, hinge on 'how surprised' a GP would be. But, if everyone recorded these two statements, and post-mortem records of the statements (dated) and the date of death were available for analysis, then it would be possible for/to:
a) Individual GPs, could compare their own 'forecasting and categorising' skills/approach, to that of other GPs - consistency across GPs, could be assessed;
b) As the second statement is effectively for 'expected death', the time between its appearance in the notes, and the actual death, reveals the 'X' in (for a given GP) 'expected death equates to death within 'X' days'. If the coroner and the area's GPs see that 'X' in the region is coming out at '20 days', or at '3 days', when the 'idea' was that 'X' should be 10 days (for example), GPs can try to modify their behaviour.
Note: I realise, that it isn't 'death within 'X'days - the forecast is really 'I expect the patient will die on the Xth day from now' but with an error distribution curve - but you will get the point, of being able to compare the objective and the reality:
c) The information about how many patients die after the first statement has been recorded, but before the GP has recorded the second 'expected death' statement, is really useful analytically. And so is the percentage of known EoL/LYOL patients who die without the first statement havng been entered into patient notes;
d) The 'death trajectories' of different illnesses, could in theory be harvested to a large extent, by analysing the dates and presence of the statements, and the time of the death (put simply, it would tell you whether it was easier to correctly predict the death for a COPD patient, compared to a patient dying from liver failure, etc).
Just above a) I mentioned two criteria - they came from this part, which didn't easily fit anywhere above:
'It is clear, that different areas are writing their own policies, for end-of-life - and in one area it is called Last Year(s) of Life (LYOL). I approve of LYOL, as it happens.
But I would point out, that NHS staff do sometimes move around, and Ambulance Services often cover many different CCGs.
So, surely a 'common core approach' within locally-modified EoL/LYOL guidance, would make sense ? And the common bits, should be both fundamental and also 'unambiguous'.
Sorry about the length of that piece - I hope, that I explained the issue(s) clearly !
There is something else 'very weird indeed' in those Joint CPR Guidelines (see the previous post, above).
Despite it being clear that a Welfare Attorney (sometimes referred to as 'an LPA') is appointed to MAKE best interests decisions, the BMA/RCN/RC(UK) seem to think they can ignore that fundamental legal point. On page 19 of the guidance, we can read that:
In England and Wales the Mental Capacity Act allows
people over 18 years of age who have capacity to give
Lasting Power of Attorney (LPA), appointing a Welfare
Attorney to make health and personal welfare decisions
on their behalf once such capacity is lost. The Court of
Protection may, on application, appoint a deputy with
similar powers. Before relying on the authority of this
person, the healthcare team must be satisfied that:
[several valid reasons missed out here, but a list ends with]
the decision being made by the attorney is in the patient's
best interests.
This is truly weird - it simply ISN'T THE ROLE of the clinicians to decide what is in the patient's best interests, when a Welfare Attorney has been legally-empowered to make that decision. The law is very clear indeed, about what clinicians can do, if they are unhappy - and it ISN'T 'not rely on the authority of the welfare attorney because we [clinicians] disagree with the best interests decision'. It is explained in sections 6(6) and 6(7) of the Mental Capacity Act:
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.
6(7) (7) But nothing in subsection (6) stops a person-
(a) providing life-sustaining treatment, or
(b) doing any act which he reasonably believes to be necessary to prevent a serious deterioration in P's condition,
while a decision as respects any relevant issue is sought from the court.
Those two sections - which seem clear to me - are explained very clearly in the MCA's Code of Practice, in section 7.29:
7.29 Attorneys must always follow the Act's principles and
make decisions in the donor's best interests. If healthcare
staff disagree with the attorney's assessment of best
interests, they should discuss the case with other medical
experts and/or get a formal second opinion. Then they should
discuss the matter further with the attorney. If they cannot
settle the disagreement, they can apply to the Court of
Protection (see paragraphs 7.45-7.49 below). While the court
is coming to a decision, healthcare staff can give lifesustaining
treatment to prolong the donor's life or stop their
condition getting worse.
There is NOT any 'option' for healthcare professionals, to 'challenge' the best interests decisions made by welfare attorneys, on the grounds that 'we think you've made the wrong decision' UNLESS THE HCPs APPLY FOR A COURT RULING - and even then, what they can do while awaiting a court ruling, is limited to 'preservation of life'.
However, more interestingly, IF MEDICS BELIEVE IN THEIR OWN 'LOGIC', then presumably when the medics think that they are empowered to make best interests decisions, they are equally happy for family and friends to say 'we've decided to not rely on your best interests decision, because we are not satisfied that the decision you [HCPs] have made is in our loved-one's best interests' ?
That one really is a 'step too far' - irrespective of the issues with a lack of 'definition' of the meaning of 'best interests', it is clear that best interests decisions which fall within the powers of Welfare Attorneys or Court Deputies, and are made and expressed by those WAs or CDs, are supposed to be followed: that is why WAs and CDs are there !!!
I am not happy with the various defects present in the new Joint CPR Guidance - however, the mistakes are so easy higlight, that the guidance itself can be used to prove that the BMA, RCN and RC(UK) are definitley not 'experts' for things such as 'expected home death' or law: which is good, considering that laymen such as myself frequently come up against the 'the experts know best' problem.
PS There is an issue, with 'clearly perverse' best interests decisions, whoever makes them - the MCA doesn't really address that issue (because of section 4(9)'s wording), but it isn't obvious how it could be addressed. The Office of the Public Guardian's staff, talking on the radio some time ago, said something like 'make sure that you trust the person you appoint as a welfare attorney' - that is indeed where the 'safety' rests, because the law does go with 'the patient appointed the welfare attorney to make the decisions'.