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Wednesday 12 December 2012

Thought provoking papers on capacity

I came across two fascinating papers this week that I thought I'd share, both of which have interesting implications for that slippery concept we call "mental capacity".  The first was a case report by a medical team who had 'established capacity'* in a patient with partial locked in syndrome (Carrington, S. & Birns, J. (2012) 'Establishing capacity in a patient with incomplete locked-in syndrome', Progress in Neurology and Psychiatry 16(6) p 18-20 - happily the paper is FREE!).  This is one of the first papers I've seen on the communication aspect of mental capacity.  As Tom O'Shea and I were pondering on Twitter, I wonder if this test would have come out differently if the man had been making decisions which his treating team disagreed with.  The paper is also of interest in connection with advance decisions, because whereas before his stroke the man had indicated he would not have wanted to live with partial locked-in syndrome, following his stroke he not only wanted life-sustaining treatment, but he wanted to be resuscitated in the event of cardiac failure.  A lot of the debates surrounding Tony Nicklinson's request for assisted suicide assumed that nobody would want to live in his shoes (yes Polly Toynbee, I am talking about your particularly offensive article), yet a survey conducted last year actually found that a majority of people with locked in syndrome were happy and only a minority wanted to end their lives.  The point (for me) about Nicklinson was about his autonomy to do something non-disabled people would be able to do independently.  We should approach with extreme caution the assumptions people who haven't experienced a condition first hand make about quality of life.  This, of course, has a bearing on the ongoing DNAR debates, but that's another post for another day.

The other article I wanted to bring to your attention was a brilliant paper by the Joseph Rowntree Foundation on improving decision making in the care and support of older people.  The paper wasn't about capacity as such, but it does have a bearing on how we approach capacity.  The research found that many factors have a bearing on the 'decision ecology' for older people, and I'm just going to pinch this list from their summary:
  • older people get help from others to make better decisions;
  • neighbours play a distinctive role;
  • non-kin support of independent people and volunteers is important;
  • community networks contribute significantly to decision-making and care;
  • different relationships provide different types of support for older people;
  • the support provided by different people is fluid;
  • the motivation of formal workers and semi-formal volunteers in caring professions is based on strong values;
  • formal carers can make the wrong decisions and tend to be overly risk averse;
  • informal connections do not necessarily result in better decisions;
  • older people’s well-being can be compromised by conflicts in relationships
  • older people make valuable contributions to society
The research found that 'Older people rely more on affect – gut instinct, feelings and experience – than deliberative cognitive processes but their accumulated knowledge and experience appears to compensate for a decline in effortful thinking.'  The research also focusses on the importance of trust for good decision making:
High-trust relationships increase the likelihood of formal carers making good decisions about care. For example, older people generally trust doctors and allow them a major role in decisions about health. However, for good decision-making in a medical context, doctors need to build and maintain a good relationship with older patients. Factors that undermine trust (e.g. high staff turnover, perceived professional incompetence) reduce the likelihood of good decision-making 
The research has some important implications for how we approach, and assess, capacity.  In the first place the research supports arguments which are commonly made in connection with Article 12 of the Convention of the Rights of Persons with Disabilities, that our decision making ability is highly contingent upon our social networks.  The emphasis on trust and continuity of care in good decision making suggests that the modern industrial care environment may actively deplete decision making capabilities.  The trust issues are quite interesting, and relate to an analogy I often make about my "mental capacity" to make decisions about fixing my car.  When my garage ring me to say that the blibberdibung is broken and will cost £400 to fix, I have no idea what they're talking about.  I don't understand what they're communicating to me, I don't know how to weigh the risks of taking my chances and not fixing it against shelling out half my monthly income.  So what do I do?  I rely on my gut instincts of whether or not I trust the mechanics.  In this case, I do trust my mechanics, but I can't really verbalise any rational reasons for that.  The head mechanic has a nice smile, they have a picture of Guru Nanak on the wall which they burn incense underneath, they are next door to my favourite cafe.  Those aren't really rational reasons for trusting them, but I do.  

When I think about loss of capacity to make decisions about my own care and treatment in the future, the thing that terrifies me more than anything about the Mental Capacity Act is the idea that people I neither like nor trust might make decisions on my behalf.  The way the Act is constructed makes it largely insensitive to the quality of relationships between those assessing capacity and making best interests decisions, and people who are alleged to lack capacity.  Because it relies primarily upon a 'general defence' it constructs capacity assessors and best interests decision makers as fungible entities, as if anybody could assess your capacity and make decisions on your behalf.  (In fact, I often wonder if one of the reasons why the MCA is so popular in the research literature is because most of the research literature is written by professionals, or about professionals' views of the Act, and it empowers professionals to a really quite remarkable degree). But we are talking about relationships with people who will pry into one's reasons for highly personal decisions and, potentially, then make them on your behalf.  This inattentiveness to relationships is one of the worst things about the MCA in my view, and it's one of the reasons I am increasingly interested in approaches like that taken in British Columbia, Canada. 

Another important consideration is that if older people (in fact, I suspect, all people) make decisions on the basis of gut instinct and affect, rather than 'conscious rationality', the underpinnings of their decisions may be less susceptible to verbal justifications.  They may, therefore, be more likely to be interpreted as decisions which 'lacked capacity' by assessors.  For example, take this passage from the case RT v LT: 
In his oral evidence, Dr K's emphasis, as it seemed to me, was on what he perceived as LT's inability, in the words of section 3(1)(c) of the Act "to use or weigh ….. information as part of the process of making the decision". In this regard, as in others, he was forcefully and skilfully challenged by Miss Markus for RT, who had earlier given oral evidence that in his view, LT did indeed have capacity. A capable person, Miss Markus suggested, might well dismiss arguments out of hand as contrary to a strongly held belief. Dr K agreed: what, however, made LT different was what he had earlier in his evidence described as "the wall through which you could not pass". Miss Markus put to Dr K that he had not really given LT the opportunity to go back and "identify the negatives". Dr K responded that he had tried, but had been met with "don't know"s and "I want to go home – why don't you understand that?"
LT's frustration with the questions of the assessor, with being assessed, is palpable in this passage.  She clearly strongly wants to go home, but can't verbalise her reasons for it.  Can most of us verbalise our reasons for our most strongly held preferences and values?  I can't easily verbalise the reasons for some of the most important decisions I ever made.  Some of the best decisions I ever made I made whilst experiencing mental illness myself, and I certainly could not have verbalised the reasons for it then.  The neuroscientist Damasio has argued that far from emotions conflicting with reason, they underpin it (2008).  It's well known in psychology that people construct post-hoc rationalisations for decisions which were made on the basis of emotion.  If capacity assessments are just picking up on people's ability to rationalise post-hoc decisions which they made on gut feelings and emotions, then they will penalise people with reduced verbal fluency even though they may be making decisions on the same basis as anybody else.  

One of the points made by Amita Dhanda in her critique of functional capacity is that 'this process of identification will render the capacity of all persons with disability open to question' (Dhanda, A. (2006-7) 'Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future', Syracuse Journal of International Law and Commerce 34 p 429).  One of the peculiarities of the Mental Capacity Act is that one of its supposedly most progressive elements - that capacity is "decision specific" - could potentially also prove to be one of the most problematic for disabled people.  It means that the potential for any decisions of yours to be found to lack capacity is ever present.  You could successfully demonstrate your capacity on a Monday, and find you've lost it on Tuesday to a different assessor.  Any decision you take which puts those around you on high alert, you will probably have to demonstrate you had the capacity to make.  This, in turn, places people who have conditions where their capacity is frequently called into doubt in the position of having to justify a vast array of decisions to a large number of people who stumble into their lives, decisions which most of us just take for granted.

I'm not saying, as some would argue, that it is never appropriate to act in a way which overrides a person's choices or actions.  When I cast my mind back to some scenarios I experienced working in care, or think about some of the situations which have arisen in case law, it makes me uncomfortable to think what would happen if there was no mechanism to, e.g., restrain a person or make some limited decisions on their behalf.  Just to give an example from case law, think about P in the Cheshire case - imagine if you were unable to stop him trying to ingest his soiled incontinence pads.  P had previously had to go to hospital because his airway had become blocked from doing this, and so a care plan was devised which imposed certain restrictions to prevent him from doing this.  Or think about Mrs EH who (because of her dementia) is leaving the gas on, forgetting to eat, forgetting to take her medication, forgetting to wear warm clothes and wandering out into busy roads.  Support isn't always a straightforward answer if, like Mrs EH, a person doesn't want support and doesn't believe they need it (Mrs EH thought she was still in full time employment and was managing tasks like cooking and shopping when she manifestly was not).  I just don't think those arguing that we should abolish substituted decision making altogether have given us any answers for situations like these,** unless the answer is "let people like P choke and Mrs EH wander in front of a car, so that people with less impaired decision making have more freedom" - an argument I find utilitarian and abhorrent.  But at the same time, the mechanisms of the Mental Capacity Act do seem, to me, to exacerbate unequal power relations between people with disabilities and those supporting them, do seem to be inattentive to the realities of how we all make decisions, and consequently do seem to perpetuate inequalities and double standards for people with disabilities.

*I put 'established capacity' in quotes not to indicate doubt about this man's decision making abilities, but to establish some critical distance from the concept of capacity itself.
**To those who have sometimes suggested to me that the 'duty of care' would provide for situations like these, no no no it wouldn't.  At least, not in England and Wales.  The duty of care to interfere with a person's autonomy is engage only where their ability to make a free and informed rational choice is impaired, that is to say, where they lack capacity.  'Necessity' is also sometimes suggested, but the Mental Capacity Act is the codified doctrine of necessity for these types of issues.

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