My ongoing debate with David Oliver: it isn't that I cannot see 'grey areas'
I have an ongoing and interesting 'debate' with Professor David Oliver, which takes place within BMJ rapid responses and also e-mails.
To be clear about this: I like David, and I think he is deeply concerned with improving the care of elderly patients.
But David repeatedly tells me that I am over-simplifying things, when I assert my preference for law over ethics - and I reply with 'you are a hospital consultant, and I write as a former family carer during end-of-life at home, and we disagree because of our perspectives'. As I recently commented in an e-mail to some other people (as an aside to the comment that David uses 'main carer' for a concept which Ilora Finlay had used next-of-kin to describe):
'I've been continuing my argument with David Oliver, in BMJ responses, over 'law versus ethics' and related issues during the last couple of weeks: David claims that I don't accept how 'grey' situations can be, and I claim I fully accept that, but he isn't standing where I am. Bluntly, that David's 'grey issues' tend to occur inside a hospital, when family and/or patients are talking to a consultant and a decision is not 'an emergency' - but my 'grey issues' happen when usually a family carer, is inside a home, and talking to 999 Services (not to the GP) when a decision has to be reached very quickly. The level of understanding of the staff, and the rapidity required during decision-making, are significantly different - as is what 'looks like a grey area' to professionals and family carers. I think that David does not understand how confused EoL at home can easily become, when current 'protocols' might be sensible if the level of discussion and communication implied within them were the reality - but that level of discussion and communication simply is not the reality !'
David appears to me, to be arguing that 'ethics and law' are what must be considered - I consider that 'law, then a combination of logic, ethics and morality' are what must be considered. As I repeatedly stress, David's experience is as a senior hospital doctor, but mine is as a family carer during end-of-life at home, and particularly when a family carer is interacting with people other than the GP.
To explain my position with an example:
a) Nobody disputes that the NHS is struggling to meet demand - that clinicians are really hard-pressed
b) GPs and District Nurses are also under those pressures - these clinicians spend only limited amounts of time with end-of-life patients who are in their own homes
c) There is an objective, to allow more patients to die in their own homes, if patients wish to do that
d) Things which 'look like emergencies' often occur as death nears: 'collapses', cardiopulmonary arrest - and the patient often cannot express a decision DURING these situations
e) However the law is clear - once informed, mentally capable patients can make their own decisions, and these decisions can apply during future periods of incapacity which the patient had anticipated
Now, WHEN I PUT THESE TOGETHER, I arrive at this:
1) because of d), the clinicians are under a duty to explain to patients 'what might happen in the future, and the clinical consequences of those things and any decisions you make about those possibilities'
2) therefore, we should be assuming 'informed patients' ('ongoingly-informed patients')
3) because of e), informed patients can make and express decisions whenever they want to do that, including about future potential treatments - and BECAUSE OF b), it is entirely possible that these decisions will be expressed FIRST to family carers who are sharing a home with the patient
I now introduce 'logic and ethics': the 'logic' is that most family carers are honest, and the ethics is that 'therefore the 999 Services must be told to BELIEVE WHAT FAMILY CARERS TELL THEM ABOUT DECISIONS MADE BY THE PATIENT [unless there is some definite evidence of lying]'.
Put even more simply:
'If a patient is allowed to make his own decisions, and logically then needs to tell someone what his decision is, if the patient tells a family carer BECAUSE ONLY THE FAMILY CARER IS THERE TO BE TOLD, then professionals (people such as 999 paramedics) must subsequently believe the family carers account of this conversation if the patient has collapsed and cannot confirm it'.
Currently 'the system' seems to want a family carer to prove that such a conversation took place, instead of defaulting to trusting family carers: I see that as both ILLOGICAL and UNETHICAL - not to mention as GROSSLY OFFENSIVE and IMPOSSIBLE.
So, I do 'sometimes use ethics' - but not, in connection with whether the MCA 'contains 'soft paternalism'' (it doesn't - the MCA as a law has settled on defining decision-making, decision-making authority, and decision-making justification, and having entrenched 'patient individuality' at its core, the MCA has thrown away 'paternalism' of any strength: I've never claimed this is an easy thing for working clinicians 'to live with' [and I've often pointed out that it is very difficult for working clinicians to accept and apply] but you cannot logically combine the MCA and paternalism without creating a conceptual mess).
I was reading 'Realistic Medicine' by Scotland's Chief Medical Officer last week. A theme of the piece is the increasing relevance to the NHS of elderly, and of 'end-of-life', patients.
There is a suggestion that there should be fewer interventions during end-of-life - and there is a graph on page 14 which seems to show that patients with one type of lung cancer live longer with 'early palliative care' than with 'standard care'. The 'standard care' graph looks a bit 'strange' in its 'most patients have already died' area, but more significantly length of life isn't necessarily the best metric here: 'how good was the patient's life ?' isn't assessed by length of life.
We are also told of a King's Fund study (and I recognised the title - I've read that study, and I seem to remember having a few issues with it) which tells us something interesting:
3 Doctors generally choose less treatment for themselves than they provide for their patients.
That was no 3 in a list, and let us assume it applies to end-of-life, because no 1 in the list was:
1 Doctors often fail to take into consideration patient preferences in suggesting and providing treatment. Treatment that does not coincide with the patient's preferences may ultimately be wasteful (in that it doesn't provide value for them). This can be seen in the use of heroic, complex and uncomfortable treatments as a patient approaches the end of life. It also appears to be demonstrable in many more settings.
So, let us assume that when doctors 'are dying', they chose to have less active treatment than the public receives - and, let us ask 'how come - why is that ?'.
Possible explanations which spring to mind, are:
a) Doctors understand the outcomes of treatments [and of no treatment] better than their patients, and the difference would not exist if that difference in understanding was not there;
b) Something about being a doctor, changes their decision-making: even if the public and doctors both understood the outcomes of the various treatment options, doctors would choose less treatment for themselves than the public chooses.
In principle, explanation a) is unsatisfactory - if it is the reason, it indicates that the public are not being adequately-informed by doctors and nurses. Explanation b) is trickier: there might not be any 'right or wrong' in b), just 'differences'.
Now, there is a paradox in the law/MCA, if you agree with me about what the MCA says. It is that if a patient has lost mental capacity, then any best-interests decision-maker must try to 'think like the individual patient' - but that while mentally-capable, patients are only required to express their decisions, and need not 'explain their thinking' unless they choose to do that. I've discussed this 'paradox' elsewhere and at length. See the footnote.
Many doctors, think that they are allowed to ask patients about 'how and why you reached your decision'. My position is that doctors can ask, but that patients are under no obligation to answer.
Put another way, doctors think 'understanding the patient's beliefs' is a part of their job.
I ask a question: can a patient legitimately ask his GP two questions, and expect to receive the answers ?:
Q1 Do you have a religious belief, and what is it if you do ?
Q2 Do you believe that suicide should be illegal ?
Why might a patient want the answers ?
Well, suppose that you are terminal and secular. For so long as you are trying to stay alive, you want active treatments and as much intervention as would help you: in this situation, you might like your GP to 'consider that life is sacred' and to be 'very pro-life'.
Suppose, you become more ill, and reach the point when 'I would prefer to not wake up tomorrow - I would now prefer to be dead'. You might no longer want a 'pro-life' GP - now, you might want a secular GP who would see your 'no more interventions' position as being your choice, not as 'somehow giving up'. And you definitely, I think, wouldn't want to 'argue the toss' with a pro-life GP or nurse, about whether your 'I would now be better off dead' position was right or wrong.
Footnote.
Clinicians think they need to understand how the patient thinks, because 'understanding how the patient thought' is a fundamental part of best-interests decision-making (100% true) and that the clinicians make the best-interests decisions (not necessarily true and where I fundamentally disagree with clinicians about what the law says).
It is in theory possible, to apply 'how the patient thought' WITHOUT getting 'inside the patient's thoughts' - if you have lived with someone for many years, you can resort to 'what I saw him DO'. In any event, judges such as Mr Justice Hayden accept that if you are not a person who is 'close to the patient' then you should be relying on those people who are 'close to the patient' to answer this 'understanding how the patient thought' question:
http://www.bailii.org/ew/cases/EWCOP/2014/4.html
53. If ever a court heard a holistic account of a man's character, life, talents and priorities it is this court in this case. Each of the witnesses has contributed to the overall picture and I include in that the treating clinicians, whose view of TH seems to me to accord very much with that communicated by his friends. I am left in no doubt at all that TH would wish to determine what remains of his life in his own way not least because that is the strategy he has always both expressed and adopted. I have no doubt that he would wish to leave the hospital and go to the home of his ex-wife and his mate's Spud and end his days quietly there and with dignity as he sees it. Privacy, personal autonomy and dignity have not only been features of TH's life, they have been the creed by which he has lived it. He may not have prepared a document that complies with the criteria of section 24, giving advance directions to refuse treatment but he has in so many oblique and tangential ways over so many years communicated his views so uncompromisingly and indeed bluntly that none of his friends are left in any doubt what he would want in his present situation. I have given this judgment at this stage so that I can record my findings in relation to TH's views. Mr Spencer on behalf of the Trust does not argue against this analysis, he agrees that nobody having listened to the evidence in this case could be in any real doubt what TH would want.
The significant sentence is, with my upper case:
He may not have prepared a document that complies with the criteria of section 24, giving advance directions to refuse treatment but he has in SO MANY OBLIQUE AND TANGENTIAL WAYS OVER SO MANY YEARS COMMUNICATED HIS VIEWS so uncompromisingly and indeed bluntly that NONE OF HIS FRIENDS ARE LEFT IN ANY DOUBT what he would want in his present situation.
I will probably add something further to this theme of where David Oliver and I disagree later. To 'briefly touch on that' I will say this:
If I were the father of a 22 years old anorexic daughter, then I doubt that I would simply adopt 'its her choice' as my position.
If my elderly parent were dying at home, then I definitely would be supporting what I knew my parent wanted to happen, as opposed to what a GP wanted to happen - here, I completely go with 'its my parent's choice'.
I've decided to develop - and it isn't easy to describe - this issue of 'soft paternalism' in a series of pieces to appear here.
I'll call them 'Chapter 'X': title' and they will appear one at a time.
Some might not seem to be directly connected to 'soft paternalism', in which case I simply thought the point relevant.
Chapter 1: Surgeons must learn from but not dwell on their 'mistakes' - but bereaved relatives do dwell on 'bad' deaths
Henry Marsh, the brain surgeon, explained in his book 'Do No Harm' that surgeons cannot spend too much time thinking about when their operations had awful outcomes for patients - for example, left the patient paralysed, or unable to talk.
If something 'goes wrong' with a death, then bereaved relatives cannot so easily 'forget'.
For example, if your dying mother makes it very clear to you that she is determined to die at home, and not in hospital, and you support her for months towards that end, then 'right at the end of her life' she collapses and a 999 paramedic who is involved 'scoops her up and takes her to hospital where she dies without returning home', you won't easily forget that.
If your dad has made it very clear that he would never want anybody to attempt cardiopulmonary resuscitation, and somebody such as a paramedic or a nurse attempts it, you will be very angered by that even if the CPR fails (which it probably would).
What 'angers you' is the 'system' failing to do what YOU KNOW your parent would have wanted - or more often doing something you know your parent would not have wanted - and frequently this type of thing happens because there isn't a properly joined-up 'system' around dying, especially if patients are in their own homes.
From my family carer, or patient position, I do not see why I should be accepting, or forgiving, of this 'failure of the system to get its act together in a patient-centred way'.
Chapter 2: 'Professional Duty of Care' might well be a learned behaviour - but working out what is in a person's 'Best Interests' is something an informed layperson must be capable of doing
I stress, again, that I write 'as a family carer during end-of-life at home'. I therefore 'write with an objective of protecting family carers who are doing their honest best' - it is a sad fact, that this protection is necessary because of some deeply unsatisfactory professional behaviour (especially by the 999 Services).
I'm told by a Hospital Geriatrician that:
'And when it comes to assessing mental capacity for a specific decision according to those legal tests set out in the MCA, there is inevitably more grey because the professional making the determination must make a judgement about how much the person really does understand about ramifications or how much their decision making is coloured by say pain, fear, anxiety or desperation to leave hospital'
Now, my issue is this: clearly it can be tricky to decide whether a person possesses capacity (and the 'pain/fear' issue is absurdly intricate - there are reasons why I write about CPR, and one of those reasons is that you are not 'in pain' when CPR would be attempted because you are unconscious !), and professionals will be more experienced and trained - but, ANYBODY WHO IS ABOUT TO ACT ON 'BEST INTERESTS' GROUNDS MUST 'ASSESS CAPACITY'.
Family carers, are definitely subject to the MCA - and they can only act to thwart a patient's self-determination if the family carer is satisfied that the patient is indeed (technically, could reasonably be considered to be, mentally-incapable) mentally-incapable for the decision in question. And family carers are REQUIRED to act 'in the patient's best interests' because only by doing so, can the protection of section 4(9) of the Act be claimed.
It is even clearer, that because of sections 6(6) and 6(7) of the MCA, combined with the fact that a layperson can be appointed as an attorney, that 'normal lay people, if adequately informed and if they have read the MCA, MUST BE CAPABLE of making satisfactory best-interests decisions'.
SO WHILE 'MEDICAL ETHICS' and 'SOFT PATERNALISM' might be complex ideas and beyond the grasp of family carers, THE MCA MUST BE UNDERSTANDABLE BY FAMILY CARERS.
If I'm out with a friend, he gets 'blind drunk' and starts wandering into the road, nobody is likely to object to my pulling him out of the traffic - it isn't clear to me that 'legally he is in my care' but I think 'act first and don't bother about the law' is what everyone would do.
If you are a live-with family carer for a terminally-diagnosed loved-one, you are definitely 'involved'. Either you therefore must follow the MCA, and act in your loved-one's 'best interests', if he loses his capacity, or the alternative [which equates to 'the MCA would not apply to you] would be that you are 'not involved - and you can legitimately just stand and watch'. My understanding of English law, is that if you are 'a passer-by' and out-of-doors, 'legally you can just walk past someone who has collapsed in the road': but that isn't true when you are involved in the care of a dying loved-one. And you wouldn't want it to be true - family carers ARE NOT SPECTATORS ! The 999 Services 'somehow' often seem to think that family carers are spectators - which is a major issue for me. See Chapter 3.
There was an episode of 'Inside Health' on BBC Radio 4 today (19 October 2016) and some GPs were talking about end-of-life in the programme.
GP Dr Nour Ghazal said (transcription): " I don't think any of us would like to talk about death itself or when you are going to die"
GP Dr Margaret McCartney said "writing a care plan - now, care plans - people mean different things by them, but what I mean is ..." and she also told us (100% correctly in terms of what they do - but not in my opinion what they should be doing !) if you don't have a DNACPR Form the automatic response of emergency services is to go ahead and do CPR.
Now, it is indeed very difficult to 'talk about the dying bit': as I pointed out in one of my earliest BMJ rapid responses:
http://www.bmj.com/content/347/bmj.f4085/rr/652862
'The question, is how are the cultural and other barriers which tend to inhibit discussions of 'the actual dying bit' to be overcome ? Clinicians seem relatively keen to discuss care during the progression towards death, and aftercare of grieving bereaved: but the closer to 'the moment of death itself', the quieter clinicians seem to become, in terms of being willing to have honest and open discussions with their patients and the public.'
The GPs both wanted to do what their patients chose - for example, facilitating dying at home if the patient wanted that.
I CANNOT GRASP why the 999 Services, or anybody else for that matter, fails to understand that 'there is a 'FAMILY CARER'S 'DUTY OF CARE'' during EoL - and it is TO ACHIEVE THE PATIENT'S OBJECTIVES'.
Family carers are with the patient for far longer than the GP or community nurses are, family carers listen to their dying loved-one [and from a background of a far deeper 'understanding of the individual' than that possessed by the GP or nurses !], and it is I think INEVITABLE that most secular family carers will just 'be trying to do what their loved-one wants done'.
Why would you do anything different ? I simply cannot grasp why you would try to impose decisions on a terminal loved-one, when the consequences of the decision would be felt not by you but by your loved-one. How can you live with 'I decided to do or support something I know my dad didn't want - and it went dreadfully wrong, with horrible consequences for my dad' compared to 'my dad decided - and it was his decision'.
That is certainly my position as a secular person - I have no evidence, but my guess is that most secular family carers would agree with me.
To end 'where I started': 'working out what is in a person's 'Best Interests' is something an informed layperson must be capable of'
A live-with family carer is in ONGOING CONTACT with the dying person: you listen to your loved-one, you see how she behaves, etc. Listening to your loved-one's decision and following it isn't really anything to do with best interests (but turning that 'listening' into 'written advance statements' INSTEAD OF written Advance Decisions is 'best interests' and makes little sense !) but in a wider sense, all of this ONGOING CONTACT EQUIPS YOU TO PROPERLY CONSIDER SECTION 4(6) OF THE MCA if you do need to make a 'best interests decision'.
Chapter 3: The 999 Services 'somehow' often seem to think that family carers are spectators - which is a major issue for me
'Tis but a small step, fellow traveller', to get from the combination of 'the NHS's approach to improving end-of-life care is to 'register' patients who are expected to die within a year or so', and my assertion in Chapter 2 that live-with family carers are the people in closest contact with the patient and are best-placed to listen to the patient, to:
When a family carer who is known to be caring for an EoL patient calls 999, instead of 'delving into the records and trying to make 'best interests' decisions themselves', 999 paramedics should instead:
ASK THE FAMILY CARER 'WHY DID YOU CALL US - AND WHAT CAN WE DO TO HELP ?'
I involved a senior WMAS paramedic in discussion of these things (MCA, ADRTs compared to 'DNACPR forms', expected/unexpected death', etc) after the fiasco surrounding my mum's death, and after a few months of this discussion (he was surprised to discover that 'expected death' and 'unexpected death' were not, as he had believed, 'legally-defined terms') he sent me this in an e-mail:
'We are a long way from doing this (although I would!!) But at least we are beginning to agree .. Resus in my opinion is just a clinical intervention like any other skill and should not be seen as a mandated right by health care professionals .. After all if we were not called it would not have been done!! The simple answer is to ask why were we called and how can we help!'
I LIKE THAT 'SIMPLE ANSWER' - because the current approach SEEMS TO BE BASED ON 'FAMILY CARERS ARE NOT TO BE TRUSTED' which deeply angers me.
But he sent me that, about 2010 - we are not any closer to the 999 Services being told ' to ask why were we called and how can we help!'.
Chapter 4 will cover 'can 999 paramedics make genuine best-interests decisions' and 'how does 'duty of care' work if you've got a family carer who does understand what the patient wanted, and who has talked to a patient more recently than anybody else has, and a 999 paramedic who knows absolutely nothing about the collapsed patient 'in a holistic sense'.
Chapter 4: Can 999 Paramedics make 'best-interests decisions' ? - I can't see how they can claim they can
This is one of the 'core issues' I write about, and where 'the system' and I are at odds.
Technically, the reason a person has to act in a mentally-incapable person's 'best interests' [as defined by section 4 of the Mental Capacity Act] is mainly to claim protection from a charge of 'intervening without consent' (the other reason is to avoid being charged with 'neglect' - which is more complex to analyse). So, if a person is in cardiopulmonary arrest, my attempt at CPR involves violently compressing her chest, which might break bones and cause some internal damage - obviously, such behaviour in any normal situation, 'is an assault'.
The MCA provides this legal protection, if you can claim to have satisfied section 4(9) of the Act, which involves having acted in accord with section 4(6). And section 4(6) is very complex indeed - it doesn't seem logically defensible to claim that just reading a 'care plan', or an EPaCCS, or whatever the former ECTP ends up being called, is enough to claim compliance with section 4(9).
Put simply, I don't believe that paramedics can make defensible MCA best-interests decisions.
But I think that family carers, if informed of the medical situation by a 999 paramedic, COULD make defensible MCA best-interests decisions.
Because of what I wrote at the end of Chapter 3.
In my opinion, if the NHS has recorded a patient on an 'end-of-life register', then this has 'systemic implications' - but you can't claim to have satisfied those implications by incorrectly arguing that you can somehow 'make the 999 services a part of the patient's inner-core of carers' simply by documenting discussions and decisions which the 999 services were not directly involved in. Only the people who were [or perhaps should have been] involved in those discussions, are in a position to satisfy section 4(9) of the MCA.
Perhaps the most logical response would be to create a register onto which patients at the end of life could upload their personal wishes. This would be accessed by the ambulance control in the event of the 999 call being made ,and therefore the attending paramedic making a more informed approach as to the course of action taken. This would also relieve the pressure on attending crews .
Have a look at the preferred priorities of care where a person who is end of life can say what they would prefer. For example if I wanted to die on the beach but it was not possible due to distance, weather etc, play me the sound of the sea and it would be as near as possible to my wishes http://www.dyingmatters.org/sites/default/files/preferred_priorities_for_care.pdf
Hi Tim and Ann,
Thanks for contributing.
I've just spent 20 minutes typing a response, then hit the wrong button and lost it. I'll add something tomorrow dealing with Tim's post (he is describing what is happening - but it isn't satisfactory because it seems to 'distrust family carers by default' and also doesn't take into account how dying at home actually works for patients and family carers) - but my issues are quite well described in these 3 pieces:
It requires genuine integration between family and clinicians for end of life care to become satisfactory:
http://www.bmj.com/content/353/bmj.i2188/rr
I believe that Advance Decisions should be encouraged but that 'advance statements' should be discouraged:
Yes: End of life care everywhere is everyone's business:
http://www.bmj.com/content/354/bmj.i3888/rr/927045
Ann's comment is perfectly sensible for things such as what she described. But it isn't right for medical treatments, and especially for life-sustaining treatments: in my opinion we need to be getting the decisions from the patient [if at all possible] for those treatments.
I'm back with more time now, Tim.
Your '... a register onto which patients at the end of life could upload their personal wishes' is what 'the NHS' is doing at the moment.
But, although some of these electronic databases seem to have the intention of allowing patients direct access to them, and perhaps direct editing of them, I have NOT seen a system which allows the family/friends living with the patient to interact directly with the databases.
The closer patients come to actually dying, the faster things can actually happen, and in my opinion the more complex situations can become: also, if you are the family carer of a dying patient databases are not the first thing on your mind. And if you are the patient, and very frail, in great pain, becoming increasingly tired, etc, you might not have the energy/enthusiasm to directly update 'your own' database - even assuming that you have got IT access, and the necessary IT 'literacy'.
My issue, is that the system simply does not seem to trust family carers. In this 'social media age' family will come to understand that 'the system isn't trusting us' and in my opinion, increasingly family carers will adopt 'so we can't trust 999' as a legitimate position. I have pointed this out:
http://www.bmj.com/content/350/bmj.h3181/rr