Argue the Toss: can Consent and Best Interests live together or not ?
I am not going to make a false show of neutrality here - it is one or the other, and the two concepts definitely make unhappy bedfellows.
I was recently reading a book, 'ABC of Dementia', edited by Bernard Coope and Felicity Richards (2014 ISBN 978-1-118-47402-0). The 'ABC series' is apparently mainly aimed at GPs, although this one is on the 'Reading Well Books on Prescription for Dementia' list. It is, in my opinion, quite technical - I think most lay readers would need to do some background reading if they wanted to follow it all (I cannot follow the anatomical terminology, for example).
The authors of the book, are people who work in mental health in the Worcestershire area, and I should make a few comments. Some of the more complex things for the Mental Capacity Act, are the interaction between mental capacity and 'mental ill-health', and especially for dementia the facts that: mental capacity is a decision-specific concept (meaning that a person can possess mental capacity for some decisions, but not for other decisions, at the same time); that mental capacity can, with a condition such as dementia, fluctuate from day-to-day; that once serious dementia has been present for a long time, the concept of 'doing what the patient would have wanted us to do' becomes increasingly difficult to work with; and that the MCA wants the 'wishes and preferences' of a mentally-incapable person, to 'be taken into account' by whoever is making a best-interests decision.
So the authors of this book, are usually facing a much more complex decision-making situation, than the ones I usually analyse in my end-of-life writing. And some of the most crucial questions for me - such as the one I raise at the following link - are very different, from the most crucial questions for these authors:
http://www.bmj.com/content/350/bmj.h2877/rr
The book is a series of chapters, each of which has a distinct author(s), although it comes from Worcester. I picked it up in my local library, when I was killing some time and wondered if any of the books about dementia, covered decision-making: and this one, is to my mind 'strange' when the authors write about the technical aspects of decision-making (I've been trying to raise this, with the authors). As examples, we can find:
Chapter 12 'Dementia and the Law
'An LPA giving an attorney a decision to refuse treatment will invalidate any previous advance decision to refuse treatment made by the individual'
Chapter 13 'End-of-Life Care in Dementia'
'Surrogate decision-makers may have taken out a Lasting Power of Attorney ...'
Chapter 5 'Drug treatment'
'In some cases where capacity is an issue, consent will ideally need to be sought from the carer ...'
Now, it might help if I explain some of the words being used here: 'capacity' means mental capacity, and the Mental Capacity Act (helped by a recent court ruling - 'Montgomery') makes it clear that if patients are mentally-capable [which is the starting assumption: it is incapacity which has to be proven] they make their own decisions about whether to accept an offered treatment, and that if the patient is mentally incapable, 'section 4 best interests decision-making applies' (where I am referring to section 4 of the Mental Capacity Act). 'LPA' is the Lasting Powers of Attorney Act, a piece of law which allows a patient who is still mentally-capable, to 'chose/appoint' another person (usually called a Health and Welfare Attorney, a Welfare Attorney, just 'the attorney' or sometimes even 'an LPA' - I usually use Welfare Attorney) to make the best interests decision about treatment. The term 'carer' usually means a relative or friend who is caring for the patient - here, 'the carer' could be the husband of a wife who is suffering from dementia, for example.
I have written often and tediously, about the Mental Capacity Act (MCA) - for example, see in particular my piece at this link and the PDF file which can be downloaded:
Before I move on and discuss those phrases from the book, I should point out that I disagree with 'mainstream clinical opinion' about what the MCA means - in my view many clinicians are not interpreting section 3, section 4(9), sections 6(6) and 6(7), and section 42 properly. Nor do clinicians seem to 'emphasise the thrust of the MCA', which is very clearly one of 'enabling patient self-determination' (Advance Decisions, the ability to appoint a welfare attorney of the patient's own choosing to control best interests decision-making, and the emphasis that patients are by default assumed to be mentally-capable).
This is not entirely the fault of clinicians, because until the last decade or two, there was a really strange [and logically unsatisfactory] legal situation, which was 'extremely muddled' in terms of 'who decided what' while patients were mentally capable. The confused legal situation, was effectively 'that patients decided which treatments to accept of refuse, but that doctors did not need to tell them everything they would need to consider in order to make an informed decision, and some 'clinical paternalism' was allowed, in the sense that doctors could try and prevent patients from making 'bad decisions''.
But the Montgomery case has made the legal situation pretty clear - the law now expects doctors to provide patients with enough information for the patient to make a properly-informed decision, and the doctors must then accept the patient's decision: this is usually described as either patient self-determination or as Informed Consent. The other idea - the idea that doctors should be 'pushing patients into making 'the right decision'' is the concept described as 'medical paternalism': and it is 'effectively dead - finally killed, by the Montgomery ruling'.
RETURNING TO THE PHRASES USED IN 'ABC of Dementia'
'An LPA giving an attorney a decision to refuse treatment will invalidate any previous advance decision to refuse treatment made by the individual'
Well, an Advance Decision to refuse treatment (ADRT), is an instruction from the patient - it is the expression of a decision made by the patient, to refuse a possible future treatment which he/she has considered. It is true that if you create an Advance Decision and then a welfare attorney is appointed whose powers extend over the same treatment as the one specified in the Advance Decision, that ADRT becomes invalid when the attorney is appointed. You can however create or express another ADRT after you have appointed the attorney (which then serves to restrict the attorney's decision-making powers). But 'giving a decision' to anybody while you are mentally capable, should remove the decision-making from them (whether or not they are a welfare attorney). So this should have said:
'An LPA giving an attorney power over the treatment specified in a previous advance decision will invalidate the advance decision to refuse treatment previously made by the individual'
There is also an issue with Advance Decisions which refuse life-sustaining treatments - it is REALLY ANNOYING and an analysis of it can be found online in my comment at 11/04/13 - 13:32 in the piece at:
THE SECOND PHRASE
'Surrogate decision-makers may have taken out a Lasting Power of Attorney ...'
My issue with this one, is 'what it seems to imply'.
It isn't the attorney 'who decides to take out a Lasting Power of Attorney' - the PATIENT decides he/she wishes to appoint an attorney, to make the necessary best interests decisions should the patient lose mental capacity in the future. So the authority of a welfare attorney, comes from the patient (but with a court 'stamp of approval' of the attorney's appointment).
On the other hand, if a loved-one has already lost mental capacity, a relative can apply to the court to be made a Court Deputy: this is more acceptably described as 'taking out'.
Patients can empower their welfare attorneys to make decisions over all treatments, including life-sustaining treatments (it is up to the patient, to decide how much power the attorney is given) - but Court Deputies cannot make decisions about life-sustaining treatments.
THE THIRD PHRASE
'In some cases where capacity is an issue, consent will ideally need to be sought from the carer ...'
This is REALLY INTERESTING.
The sentence followed a description of the pros and cons of various drug treatments for dementia, and this is presumably for the situation of a dementia patient who has lost mental capacity, who is being cared for: so, let us assume that there is a wife with dementia, and her husband is 'her carer', and that the discussion is between the GP and the husband, about a proposed medication. Suppose that the GP is in favour of the wife being given a tablet every morning, and that this would need to be done by the husband.
There is a question, of how the best interests decision is arrived at (the decision being 'is it in the wife's best interests, to take the tablet every day ?') and I do not see eye-to-eye with many other authors over that one - see the PDF from the first of the links above:
The one thing which is certain, is that the GP CANNOT 'get consent' from the husband - that is true whether or not the husband is a welfare attorney.
Doctors 'naturally think in terms of consent, but only mentally-capable patients can 'consent' to an offered treatment: if the patient is mentally incapable, consent does not apply as a concept: what applies, is 'compliance with MCA best-interests decision-making'. If the husband were a welfare attorney with power over the treatment decision, then the attorney would make and express the decision 'that it is in my wife's best interests for her to take the tablets'. And a welfare attorney's decision, stands above anybody else's opinion.
If the husband is 'just a normal relative', I think the husband is usually in a better position to make a best interests decision than the GP, although most professionals disagree with me - but whatever your view about that, the fact is that the GP and/or the husband, are making best-interests decisions. NOBODY is 'consenting to the treatment' - what people are doing, is 'claiming to have satisfied section 4(9) of the MCA'. I consider that the MCA imposes the same 'rules' on both the GP and the husband, but that section 42 of the MCA makes the situation 'a bit different for some of the other professional carers'.
The GP cannot 'order the husband' to do anything, and the husband cannot 'order the GP' to do anything (which is where section 42 introduces a complication - the GP can 'sort of order' nurses, etc, to do things) - what they can do, is TO AGREE WITH EACH OTHER about what would be in the best interests of the wife.
The GP and the husband need to talk to each other, and if they agree, it is POINTLESS (and actively unhelpful) to suggest than either one of them has made the decision - it makes more sense to claim 'that they have discussed the situation with each other, and they both agree that it is in the wife's best interests for her to take the tablet'.
And at a practical level, if the husband tells the GP 'I won't give the tablets to my wife', and it is the husband who is the wife's carer, how would the tablets be given ?
COMMENT: It might seem that the GP saying 'I suggested the wife take [whatever the medication is] and the husband consented' is not so very different: but it IS different, because it is not a correct description of the MCA's best-interests requirement (and that is something which is much misunderstood, and really does need to be 'tidied up' in the minds of GPs and nurses).
I sent an e-mail to a consultant earlier this year, asking him if his understanding of the MCA was similar to mine, and it seems to be - he sent the following e-mail, and it looks very much like what I write about the MCA, but it isn't quite the same as what many other clinicians write about the MCA. I would not have written a few things, which he has written - but I think, if we 'argued the point', we would actually be agreeing with other. He says 'You cannot consent on behalf of another adult unless you have a health and welfare lasting power of attorney, or are a court appointed deputy (in which case it is up to the attorney or deputy to determine best interests, but this can be challenged in court)' but in fact, he does point out in there that the attorney/deputy 'is determining best interests' and EARLIER ON he had written 'To give consent you need mental capacity ... If you lack capacity the MCA allows you to do things without consent, and be protected from liability for assault or battery, so long as the thing is in the persons best interests'. Which gets us back to what I've already mentioned - doctors 'instinctively tend to think in terms of 'getting consent'.
See my piece at:
http://www.bmj.com/content/350/bmj.h2877/rr-7
I agree with him about the [sometimes extreme] stress on a relative who is making a best interests decision, but there is also 'stress' if you are a relative who isn't a welfare attorney, and you know that the professionals are doing something your loved-one would not want to happen - in fact, I keep suggesting that wherever possible, best-interests decision making should be avoided, by 'getting the decision from the patient before incapacity', as I said at:
http://www.bmj.com/content/347/bmj.f4085/rr/652862
I also have a MAJOR ISSUE with this 'the professionals can legitimately distrust the relatives' position, which almost all professionals seem to see as legitimate, but I see as offensive:
http://www.bmj.com/content/350/bmj.h3181/rr-2
The consultant wrote in his e-mail to me this:
Not much to argue with in the pdf! We seem to think along the same lines
On decision making. It is all set out in the MCA 2005 (and its code of practice) - which is remarkably readable and understandable for a piece of legislation http://www.legislation.gov.uk/ukpga/2005/9/contents
To do anything (examine, a test, or an operation) you need consent or it is an assault or battery. To give consent you need mental capacity (to be able to understand, retain and use relevant material to a decision and communicate that decision). If you lack capacity the MCA allows you to do things without consent, and be protected from liability for assault or battery, so long as the thing is in the persons best interests.
It sets out how to assess best interests. Involve the person in the decision (and facilitate communication and understanding - eg translation, sign language, pictures, whatever) ; take account of their current and previously expressed views ('beliefs, preferences and values'), consult family and 'others concerned for the patient' (actually blood relatives have no special rights - there is no such thing as a next of kin in this law, that is only for people who die intestate), and use the least restrictive alternative.
You cannot consent on behalf of another adult unless you have a health and welfare lasting power of attorney, or are a court appointed deputy (in which case it is up to the attorney or deputy to determine best interests, but this can be challenged in court)
In effect determining best interests means 'we should do what the patient would have decided, if the patient could have decided'. And you cannot comply with the law without talking to family. Done properly in the majority of cases there is no conflict. If there is no family or friends ('unbefriended' - remarkably 10-20% of those with dementia in hospitals) you should consult an IMCA. The House of Lords recently expressed frustration about poor implementation - the problem is that to do it properly is incredibly time consuming, a very scare resource. Another problem is that capacity (and best interests assessment) is decision and time specific, and we make hundreds of decisions each day. And capacity is often far from clear cut.
The decision maker is just that - the person making the decision, and it may or may not be a doctor (it could be a nurse, OT, care home manager, or social worker - SW argue that for social care decisions it is up to them NOT medical staff). It may be a family member where the family member is the decision maker (eg at home). Unfortunately a minority of family members do not act in the best interests of a frail older person. The up-side is that this avoids the 'emotional burden' of decision asking which very heavily on some.
NOTE: it is possible to regard the following, as a critical comment about the way the phrase 'Advance Care Planning' is being used by clinicians and clinical authors.
I will be sending a long PDF (I cannot attach it here since the website changes) to the authors of 'ABC of Dementia' next Monday, in the hope of getting some feedback from them.
My interest is in end-of-life but these days dementia is increasingly described as a terminal illness, so there is link; there is also a link in that mental incapacity is an aspect of both end-of-life and also of dementia, so much of my writing analyses the Mental Capacity Act in the context of end-of-life.
'ABC' makes a comment about 'understanding of the MCA' on page 49:
'the legal framework (Mental Capacity Act 2005) for decision-making was and still is largely not understood or applied by non-mental health specialist staff in acute hospitals.'
My own analysis of the MCA can be found on this website at:
but there is something in 'ABC' about the concept of Advance Care Planning, which reflects other clinical writing - in essence, an unacceptable 'vagueness and blurring' of the distinction between 'following the patient's previously expressed CLEAR APPLICABLE DECISION after the patient has become mentally-incapable', and 'MAKING A [MCA section 4] BEST INTERESTS DECISION'.
I used a phrase in the piece I'm sending to the authors of 'ABC' which is:
'Section 4 decision-making is only necessary if the patient has not made the required decision and expressed it in advance - so 'best interests' is about moving from what I will call 'the cloud of patient preferences and wishes which a person deeply involved with the patient 'has picked up on'' to 'a reasonable level of certainty, about how that 'cloud of understanding' applies to the decision in question'.'
In the PDF which can be downloaded from the link above, I explained it slightly differently when discussing cardiopulmonary resuscitation (CPR):
'A genuine section 4 best interests decision, involves 'working out the patient's likely wishes' - there must be some degree of uncertainty about those wishes. Whoever is considering the best interests test, the fundamental struggle is in persuading oneself that this uncertainty is small enough, to believe that the patient would have refused CPR for the particular CPA in question.'
I explained that 'if you are as certain as it is reasonably possible to be that the decision formerly expressed by the patient applies to the decision at hand' then that isn't anything to do with 'best-interests decision-making' - it is simply 'following the normal rule of Informed Consent/Patient Autonomy'.
There is a link to something written by a judge in the downloadable PDF:
http://www.bailii.org/ew/cases/EWCOP/2014/4.html
and the judge explains what I called 'the cloud of patient preferences and wishes which a person deeply involved with the patient 'has picked up on'' when he writes (his section 53):
'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.'
SO, THIS IS MY ISSUE WITH [almost all] CLINICAL AUTHORS - they seem to imply that patients 'should make clear their 'WISHES and PREFERENCES''. If a patient only expresses a wish or preference, the patient is still leaving the future decision in the hands of somebody else - wishes and preferences, are 'part of section 4 decision-making'.
IF A PATIENT HAS CONSIDERED A SPECIFIC FUTURE DECISION THEN THE PATIENT SHOULD EXPRESS HIS/HER DECISION - in other words, the patient should express an Advance Decision.
The expression of 'wishes and preferences' TO YOUR CLINICIANS is A VERY BAD IDEA if instead you could be clear about what you would want to happen - your clinicians, will almost certainly NEVER KNOW YOU WELL ENOUGH 'to think like you do'. Your family and friends might be able to 'think like you do' - but your clinicians, hardly ever.
Understanding a patients 'wishes and preferences' is something which should be left to THE PATIENT'S FAMILY AND FRIENDS [unless there are none who could be asked] - again, as the judge wrote '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'.
Clinicians [who should understand the MCA] muddling together patient autonomy being carried forward into a future period of mental incapacity, and section 4 best-interests decision-making during mental incapacity, is such a fundamental failure in understanding of the MCA, as to make anybody who does understand the ethos of the MCA 'weep in despair' !
ABOUT 'PATIENT CONFIDENTIALITY'
There is something about 'confidentiality' in the ABC of Dementia which is worth commenting on.
On page 47 we are told this:
'When a person with dementia enters hospital and becomes a patient, he or she enters a world of confidentiality. Hospital staff trained in the need to maintain confidentiality can be reluctant to discuss health matters with a relative.'
And on page 49, we are told this:
'In fact, the Code of Practice for the Mental Capacity Act 2005 strongly encourages discussions with family on key aspects of care and treatment.'
There is undoubtedly a serious issue with the way that many clinicians have had 'confidentiality' hammered into their thinking, while at the same time they both struggle to rationalise section 4 of the Mental capacity Act (MCA), and also 'want an organised working life'.
I have written about the clash between section 4(6) of the MCA and the concept of patient confidentiality both on the BMJ and in this discussion forum:
http://www.bmj.com/content/348/bmj.g4094/rr/703333
Before I quote from the first of those two, I will point something out: page 49 of 'ABC' mentioned the MCA's Code of Practice supporting 'discussions with family'. In fact, section 4 of the MCA itself - the Act (which is law, whereas the Code is 'guidance') - seems to require discussions not 'with family', but instead with 'anybody who could legitimately 'think like the patient'' (my phrase). The necessary consultations are not with family, they are with 'the people who understand the patient as a person'.
And I would point at the fact that 'family and friends are NOT 'structured and hierarchical' in the way that a clinical team is - the NHS often tries to 'nominate a single laymen as a point of contact with all family and friends' and that is often not appropriate, because it is imposing a 'structure' which frequently doesn't exist in 'the lay group'. I got very vexed by that in connection with some some EPaCCS guidance - see poser no 3 in the series at:
I don't think that the 'confidentiality problem' is quite as complicated as the NHS makes it become by imposing ideas which are absent inside the MCA, onto what the MCA actually says: fundamentally, while a patient is still mentally-capable, the rule is indeed 'the patient controls confidentiality' - but if the patient has lost mental capacity, the rule becomes 'the requirements of meaningful section 4 best-interests decision-making control confidentiality'.
So a good starting point, is what I wrote in the DIC piece 'Should hospital nurses and doctors be keeping the relatives of patients informed ?':
'This NHS behaviour is missing something obvious, and it is also confusing 'the patient isn't telling his relatives anything' with 'we must not share information without patient consent'.
Putting this simply, if a patient has reached a stage when the patient cannot communicate with either clinicians or with relatives, it is perfectly legitimate (and, there is some legal backing for the idea that family/friends are expected to be questioning professionals in this situation, as part of a 'checks and balances' system) for the family to ask nurses and doctors 'What is going on - what is being done to my dad ?': and the clinicians should be answering those questions, and properly engaging with family and friends.
The simple rule of thumb, probably, is that if a wife could be asked by her husband 'What have they been doing today, then ?', then the husband should be asking the wife: but if the wife has lapsed into a coma, or for other reasons could not answer herself, then it is perfectly reasonable for the husband to put the question to the doctors and nurses, and to expect answers.'
A couple of days ago I came across a paper written by a Dr Muzaffar about 5 years ago - I could only read the abstract (the full paper is 'subscription'):
http://emj.bmj.com/content/28/9/741.abstract?sid=c7cd5419-7b56-43b8-b0c2-e0f91d00ba38
Dr Muzaffar is discussing the 'famous' Kerrie Wooltorton case, and he doesn't like the outcome of the case (as I understand the situation, she wanted to commit suicide, but she did not want to die alone - so she poisoned herself but went to hospital, and explained that she did not want treatment, but she wanted to die in hospital where she would not die alone: she wasn't treated and she did die in hospital).
Where I do agree with Muzaffar, is that he writes 'The case raises many ethical and practice issues'.
But he then goes on to explain his understanding of the law, and in particular of the Mental Capacity Act, and I cannot agree with him about that: in particular he writes '... the Mental Capacity Act and case law, which clearly favour preservation of life'. No, it doesn't: the Mental Capacity Act starts from the position that mentally-capable patients are self-determining, so this case hinges on whether Kerrie Wooltorton was mentally capable (and the Act states that patients must be assumed to be mentally capable unless incapacity is proven).
I suspect - this is only implied in the abstract - that Muzaffar is also under the mistaken impression that a verbal refusal of a life-sustaining treatment is not legally-binding: that is a very common misunderstanding of the rules for Advance Decisions as described in the MCA (the simplest way to understand that issue, is to make the assumption that the MCA was written to apply to situations when the patient and clinicians were not in 'continuous contact' while a previously mentally-competent patient becomes mentally-incapable during an ongoing interaction).
Muzaffar seems to believe that the doctors in the Wooltorton case got the law wrong, when they decided to not treat her against her refusal of treatment: I suspect they probably asked the hospital's lawyers (and were perhaps surprised by the answer they received).
In any event - and I only mention this stuff about suicide, because it highlights how many doctors see ethics where the law sees patient self-determination - Justice Sir Mark Hedley has explained this situation, as I mentioned in a BMJ rapid response:
http://www.bmj.com/content/350/bmj.h2883/rr-2
'There was a report in The Independent (newspaper), June 24th 2013 (carried on pages 1, 6 and 7), when Sir Mark Hedley, a recently-retired judge, explained that 'I decided at 10pm that a suicidal man with mental health problems could be allowed to die of an overdose rather than order doctors to pump his stomach ... I decided he had capacity [to refuse treatment], so he died that night. That's exactly what he wanted to do... That one never found its way into any report of any sort'. Sir Mark was the out-of-hours Court of Protection judge.
So the law, seems to be clear about patient self-determination, and allows patients to be, to use my phrase, 'self destructive': not an easy thing for clinicians to 'live with'. Medical ethics, seems to be much more concerned with 'good outcomes' but that results in significantly greater ambiguity than is present in a well-drafted law.'
BRIEF EXPLANATION: in the piece in the newspaper, Sir Mark further explained "it was a phone call at 10 o'clock on a Sunday night. Actually directly from a consultant at the hospital, though usually they come through lawyers. There would have been no [published] order at all because once I'd made a finding of capacity, there was no jurisdiction for the court to act."
It is legally the case, that a suicide attempt is not necessarily proof of a lack of mental capacity - that makes life very difficult for clinicians, but it is the way the law now stands in England.