Sometimes thinking can help
There has been some recent discussion on the BMJ website about the Mental Capacity Act (MCA) as it applies in emergency situations, in a sort of 'teaching piece'. The authors immediately attracted criticism of their suggestion that somehow in emergencies, the MCA could be ignored and earlier 'general laws' could be used instead: the authors have conceded that they were wrong on this point (which I return to below).
There was also a recent report from a House of Lords select committee about the implementation of the MCA, with the report implying that this is very unsatisfactory, with many people including professionals either misunderstanding or ignoring the MCA. It is clear that 'safeguarding' is impeding the 'respect patient autonomy' fundamentalism of the Act - and it is clear to me, that 'process' impedes 'responsiveness'.
The House of Lords Select Committee on the Mental Capacity Act 2005 - Report (I hope both or at least one of the links, to the same page, will work):
http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/1...
http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/13902.htm
But there is a something fundamental, which is not really being discussed by clinicians and other professionals, about the MCA, and it can be argued from the same type of reasoning that resolves (to my mind) the issue mentioned above.
It is surely irrational to argue that Parliament would go to the trouble of enacting a new law, the MCA, unless that was intended to change something: arguing that 'all a new law does is to leave things unaltered' is downright weird, as a position ! When you add in 'and Parliament spends ages debating the actual wording of the Bill before voting on it', then logically you arrive at '... and we must assume that the meaning of a new law is contained within its actual wording'.
This is basically a logical argument, not a legal one - it is a description of the only way that 'laws could sensibly work': unlike diplomatic statements, a law cannot usefully 'mean different things to different people'.
There is a lot of current debate around many aspects of the MCA, including around 'best interests': the argument above, does imply that whatever 'best interests' is, it must be defined within the MCA itself, and in practice this means by section 4 of the Act. Within the overall context of the fact that the MCA, where it is clearest and most obvious, attempts to strengthen patient self-determination: it seeks to 'get the decision from the patient' if at all possible. But it isn't entirely clear, exactly what section 4 says about how a best interests decision should be reached: the Act tells decision-makers what they need to be thinking about, which isn't the same thing at all.
But the MCA includes a provision which we can also use, in this little piece of logic: the patient can (with a registration process as a check) appoint someone to make those best interests decisions about medical treatments if the patient becomes mentally-incapable - I'm going to call this person a Welfare Attorney. The Act is very clear, that if there is a welfare attorney, then the attorney is the person who makes the best interests decisions: at a pragmatic level, the attorney can consent to or refuse offered medical treatments [when the patient no longer can do that him/herself].
And, it is clear that most welfare attorneys are likely to be laymen - attorneys are very likely to be either family or friends of the patient. This is important - I never see the following argument presented by professionals, but it seems to be rock-solid.
If a nurse or a doctor is making a best interests decision, the clinicians will be influenced by their ideas about medical ethics, and their previous professional experiences, and doctors are also influenced by 'paternalism'. If a problem goes to court, the judge will be influenced by a wide understanding of the law: however, most cases do not go to courts for a ruling, and that is usually something to be avoided if possible, so I'll stick to best interests decision-making which doesn't go to a court.
Welfare attorneys are not 'trained up' for the position - they acquire the power to be the best interests decision-maker on appointment, but very few welfare attorneys will be at all expert in either medical ethics or in law: attorneys are simply 'laymen trusted by the patient', putting it at its simplest. And yet, the Mental Capacity Act places a layman who has been appointed as an attorney, 'in charge' of the best interests decisions.
The only logical conclusion, is that it follows from the Act, a typical layman (who has not been appointed as an attorney) is entirely capable of making perfectly good best interests decisions (it isn't the ability to make best interests decisions that changes when someone is appointed as a welfare attorney: what changes, is the ability to 'impose that decision on others').
This runs entirely counter to the widely-held belief, that 'the clinicians consult with the family and friends, but ultimately the clinicians make the [best interests] decision' - if [as I've shown above] there is no reason to believe that clinicians 'make better best interests decisions than family and friends', then there should be rather more discussion about that [flawed in my opinion] belief. And more discussion, would probably lead to where we should be anyway - to 'everyone has got to get together and talk about what is best for the patient'.
Mike
Yet again you raise cogent arguments on a very important topic. I too have been witness to occasions when the clinicians seem to have forgotten that there are others who might have an idea of what the individual may want, and on two occasions did not listen to the individual themselves who were more than capable of being involved in the process. I especially agree with your point about what changes when someone becomes a welfare attorney. It is not always possible to have some of those discussions at the right time, and it's never easy, but perhaps if we helped friends and relatives to talk about some the issues then we could at least speak from an informed base, maybe that's where we should be putting some of our energies. that might at the very least ensure the dignity of the individual is maintained and respected. I'd be interested to know what others think.
Hi Liz,
I've just this morning tried to get that argument onto the BMJ website via what is called a 'rapid response' - I know it has got to the Editor who decides which comments to publish, but I don't yet know if it will be published or not.
The House of Lords report was very clear about the problems - and your 'on two occasions did not listen to the individual themselves who were more than capable of being involved in the process' raises two possibilities (around 'capable'). Individuals who are considered mentally-capable of making the decision, should be allowed to make it, full stop: that is very clear, legally. And even if the person is considered to lack the capacity to actually make the decision, best-interests decision-making should consider the person's 'experience' - how the decision would 'feel to the person/patient'. It is of course true - and this also causes rampant confusion - that a patient can be capacitous for one decision, but lacking in capacity for another [contemporaneous] decision.
The trickiest part of the logic of my argument above, is that you end up with no way of arriving at a single decision, in a dispute (unless there is a welfare attorney or court deputy to impose their decision). But if you accept that, professionals and laymen would I think be forced to talk to each other rather more - and that would in my view increase the chance of the ideal situation being reached (the ideal situation, is where everyone agrees about the best interests decision: then you can record the decision, and record who was involved, but there is no need to claim that there was an individual decision-maker).
I suspect - I'm trying to find out if anyone collects the evidence for this, with no luck so far - that the easiest place to examine 'we [family] do not understand how the decisions about medical treatment are being made, and we are not clear about our exact role in the decision-making', would be to ask the family/friends of dementia sufferers.
If I used these 'social media' things (which I don't) I might be tempted to try and set up some sort of attempt to get feedback on that, using one of those social media tools.
Further to my post above, my piece about this has now appeared on the BMJ website:
http://www.bmj.com/content/348/bmj.g2043?tab=responses
Complete with a mistake - I missed a 'not' out, in:
Why would Parliament bother to enact a new law, and to spend so much time debating the wording of Bills, if new laws did [not] effect change ...
Hi Mike
In terms of collecting evidence I wonder if this is something that JRF might be able to do. There has to be a record of the numbers of best interests meetings held, and certainly in social care I am sure that LAs would be able to produce that information, I know I have been involved in several - some very good where there were lots of attempts to gather evidence about what the individual would want from a range of viewpoints and others where it was a bit-this is what would be best - and little discussion. I don't know if health care keep similar records and there will be some discussions that are' informal' that are perhaps not recorded in the same way. However I do feel strongly that it is about getting the debate out there, and am going to suggest we put something in our next newsletter to champions. The more people who are asking the question and working to ensure the individual has a role in the decision making process, albeit by proxy, the more likely we are to have those informed discussions.
Thanks Liz, I don't actually know what JRF is ?
The House of Lords report was very clear, about the widespread misunderstanding of the MCA amongst social work staff and nurses and doctors. It also pointed out that hardly any patients and relatives had heard of, let alone 'understand', the MCA and Advance Decisions/Welfare Attorneys - 'more publicity to make laymen aware' was one of the HoLs recommendations.
But I feel 100% certain, that although caring for people who are suffering from dementia and my end-of-life issues are not identical, in both situations the patients and especially family/friends would be very unclear about 'decision-making'.
There is also uncertainty about exactly why discovering 'what the patient would have decided, had he/she been able to decide' is important: if everyone is convinced that 'he had considered this situation, and he made it clear that ...' then you would [in my opinion - there is, despite the apparent simplicity of 'he TOLD us', some dispute because of the wording within sections 24 - 26 of the MCA] be following the patient's decision (so that isn't 'best interests' decision-making). It is more complicated, when everyone agrees that they have figured out 'what he would decide in this situation, even though he had not actually considered this specific situation' - that does involve a genuine 'best interests' decision, but nobody is very sure whether in this situation 'we all go with what we believe the patient would have chosen' or not. In particular, if you don't 'go with what the patient would have wanted [legally, something called 'substituted judgement' as I understand it - and problematic even for judges]', it isn't at all clear how you balance 'what we feel sure she would have wanted us to do' with 'preservation of life' issues.
But how can a patient plan ahead - for either possible dementia or for EoL - if the patient cannot understand how the professionals are going to behave, when faced with decision-making ? And unless professionals and laymen do actually talk to each other about this, how can there be a sensible balance between things like patient autonomy and professional concerns about 'safeguarding', and how can lay perspectives (and the family perspective is frequently pretty simple - 'You should be doing, what my mum would have wanted !) and professional perspectives (more hierarchical and process-based) be reconciled ?
I suspect that your ' I don't know if health care keep similar records and there will be some discussions that are' informal' that are perhaps not recorded in the same way' will be the case - I'm guessing that there will be a distinct lack of 'evidence' that people, lay and professional, are baffled by MCA best interests decision making. There will probably be lots of records, to show that people 'complied with local protocols' - the issue, is whether those protocols, comply with the law (as opposed to stating that they do - they all claim to comply with the law), and are balanced and 'sensible'.
Hi Mike
Sorry JRF stands for Joseph Rowntree Foundation, they do quite a lot of research on a range of social care, housing and community topics. Maybe the real research need is for a better way of getting the message out there and helping the public understand. I take your point about how anyone can make advance decisions about things they are not fully informed about, and that lack of information is often about how -as you say- professionals will act and interpret the legislation and the protocols that go with that. But maybe if we can encourage people to start having the conversation and writing things down we will have a better chance of getting it right. This does sound like something that the Dignity in Care campaign should work on and I'll raise it at the next Council meeting to see if someone wants to take it forward. In the meantime lets hope others will join our conversation.
Thanks Liz,
I'll track down the e-mail contact details for JRF and ask them.
I couldn't agree more, that without the conversations, it isn't possible to move forwards: there are more 'technical' issues, but if the conversations were taking place, those issues would be brought into the sunlight and thought about as well,
Mike
I've just got a reply from Joseph Rowntree Foundation:
'I'm sorry, but this isn't something we have specifically covered in our own research.'
My 'gut instinct', is that nobody will have been 'collecting this data' and/or seriously looking into this question.
JRF did supply some links - not checked them out yet, as the e-mail is only just in:
The following reports, however, refer to decision making and
may be of interest:
Talking Mats® help involve people with dementia and
their carers in decision making
http://www.jrf.org.uk/publications/talking-mats-decision-making
A Better Life: what older people with high support needs
value
http://www.jrf.org.uk/sites/files/jrf/older-people-and-high-support-needs-full.pdf
Talking Mats® helps people with dementia to communicate
more effectively with family carers
http://www.jrf.org.uk/media-centre/talking-mats-dementia-communication