This is just a quick post (I hope) before cracking on with work… It’s prompted by a great blog post by Mark B who argues that a bias against families is written into the structure of the Mental Capacity Act 2005 (MCA), and further discussions on Twitter that his post provoked.
Power games, knowledge and resistance
You only have to look at the case law of the MCA, and read the House of Lords Select Committee on the MCA‘s evidence volumes, to see that the MCA sets up, or at least sits atop, various tangled power relations between disabled people, their families and health and social care professionals. One of the most commonly occurring themes in case law are tensions between families and professionals about issues such as where a person should live, who they should have contact with, medical treatments and care arrangements. Or, the wishes of the person themselves might sit in tension with that of professionals and/or families. Because of the structure of the MCA, these disputes – which at base are about much more widely ranging socio-political and even existential issues – become disputes about the person’s ‘mental capacity’ and ‘best interests’. And then, surrounding this inner triangle of power relations, are the lawyers and the courts and bodies like regulators and ombudsmen, and even wider actors such as friends, the general public, the media (think, for one moment, of the influence the front page of the Daily Mail has over court judgments, and even over general perceptions of professionals and courts, and thus how people engage with them). The MCA structures and defines the power games that they enter into with each other and the tools they have at their disposal to achieve their goals or resist those of others.
Power is a term that is frequently used in sociology and some political theory, but you don’t see it discussed much in the literature on the MCA. Academics writing about the MCA prefer to write about autonomy, probably because somewhere along the line it got filed under ‘medical ethics’ or ‘bioethics’, and it’s received comparatively little attention from social and political theorists. But I think power is in many ways a much more useful way of thinking about what’s going on with the MCA. It’s much more attentive than the literature on ‘autonomy’ to the wider power structures that are in operation around the MCA, it’s much more worried about the different social and political and material influences on the various actors, and their complex and entangled relationships with each other and wider society. And theories of power are much more concerned about the potential for resistance.
The literature on power is also much more attentive to the influence of discourse and the constructed nature of knowledge and expertise than the literature on autonomy tends to be. In the context of the MCA, that’s hugely important. We know that different ways of talking about people influences how they are perceived and therefore treated: that’s why courts and experts using phrases like ‘mental age’ sets most people’s teeth on edge. One of the points made by Mark B in his post is that the ‘expertise’ of families is undervalued by the MCA. Of course, the MCA itself doesn’t have anything to say about ‘expertise’, but one of the research questions I’d like to look at in future is the construction of knowledge and expertise in judgments of the Court of Protection. In particular, I’d like to examine cases that pit forms of knowledge that Foucault called ‘disciplinary’, which are about norms of human behaviour and studies of ‘clinical’ populations and techniques for their ‘correction’, and forms of knowledge which we might call – after Foucault’s essay on governmentality – ‘pastoral’, the kinds of individualised and personal knowledge that a carer or family member may have precisely because of their attentive care of a particular individual, biographical knowledge, knowledge that is forged through bonds of love that cannot be replaced by claims to expertise on a particular population. I digress, but my point is this: the MCA sets up very complex power relations between an array of actors, and these connect with wider issues about the status of different actors in society.
Claims of empowerment
At some point during the development of the MCA it became associated with claims of empowerment. Lord Falconer’s foreword to the Code of Practice says ‘It will empower people to make decisions for themselves wherever possible’. A quick search of my Endnote catalogue of references throws up loads of references to papers making the claim that the MCA is ’empowering’, or promotes autonomy, or enshrines rights for people to make decisions for themselves.
I find these claims fascinating, and am in the process of putting together a proposal to do more research on the genealogy of these claims to empower: where do they come from, who was making them, and why? Because, from a purely legal perspective, this is a totally bizarre claim. What the MCA does, when you break it down, is set out when third parties can make decisions on behalf of a person who they ‘reasonably believe’ lacks ‘mental capacity’, in their ‘best interests’. It does so through a variety of mechanisms – the court can make orders making decisions on behalf of a person or declarations about their capacity and best interests and it can appoint deputies to make decisions on behalf of a person (s15-21 MCA), individuals can appoint attorneys to make decisions on their behalf should they lack ‘mental capacity’ in the future.
In the context of health and social care, the most important and frequently relied upon mechanism is what’s known as the ‘general defence’. Every day in England and Wales, millions of decisions are taken by families, healthcare and social care practitioners that rely upon the general defence. Only a tiny, tiny, proportion of health and welfare decisions end up in court. Only a tiny, tiny, proportion of people have deputies for health and welfare decisions. I’ve no idea how many people have health and welfare attorneys, but my guess is that it numbers in the tens of thousands at most, and still represents a very small fraction of people affected by the MCA. People with developmental disabilities will only very rarely have attorneys, as they’d need to be regarded as having the mental capacity to appoint one. So when we are thinking about how the MCA works, we obviously can’t ignore the operation of the court and deputies, but the general defence is for the most part what we need to think about.
The origins of the general defence
The general defence is contained in sections 5 and 6 of the MCA. It says that that a person who performs an act of care or treatment that (they reasonably believe) is in the best interests of a person who (they reasonably believe) lacks mental capacity will have the same protection from liability that they would have had if the person had consented to it. If that act involves restraint, then the actor must reasonably believe that it is necessary, and it must (objectively speaking) be proportionate to the severity and likelihood of the risk of harm that might befall them otherwise.
The fundamental architecture of the general defence is based on a case called Re F. There ain’t a whole lot about this case that’s empowering – or at least, it is empowering, but for professionals and courts, rather than F herself. F had learning disabilities and lived in a hospital. She had begun a sexual relationship with another patient, and her mother was worried that she’d become pregnant, so she asked the doctors to sterilise her. There had recently been a whole string of court cases about the sterilisation of disabled children, and so the need for some form of legal authority for sterilisation operations was at the forefront of (some) people’s minds (although there is some evidence that not all doctors were worried about this, and that sterilisations were taking place at this time without concern about legal authority). So the doctors went to court to ask what legal authority they had to sterilise a woman who, in their view, could not consent to the operation.
Reading the judgment now, F herself seems almost invisible as a person. We are not told who she is, how she feels about this proposal, what attempts have been made to help her understand it, how she has responded to medical procedures in the past and thus might to this procedure, and so on. She’s just presented as a thorny legal and social problem, with no personality, history or views of her own. (As an aside, if this case were to come to court today, it’s doubtful that sterilisation would be the issue – and much more likely that everyone would be worrying about whether she should be having sex in the first place; is that progress?!)
The House of Lords surveyed the various forms of legal authority that could be relied upon by the doctors to perform this operation. The courts had long had a parens patriae jurisdiction to make decisions on behalf of ‘incapable’ people, but this had been abolished by the Mental Health Act 1959. Statutory guardianship had existed since the early twentieth century (interestingly, this was introduced precisely as an alternative to sterilisation, to appease eugenicists who were worried about disabled people ‘procreating’; the point of guardianship and other practices like confinement in ‘colonies’ was to control their sexuality and fertility). However, by the late 1970’s guardianship was looking old fashioned, paternalistic and not a little sexist (the MHA 1959 conferred upon guardians ‘all such powers as would be exercisable by them or him in relation to the patient if they or he were the father of the patient and the patient were under the age of fourteen years’). So the Mental Health Act 1983 stripped back the powers of guardians to limited ‘essential powers’ such as deciding where a person should live, but included no powers to make medical treatment decisions. Today, guardianship is hardly ever used, and indeed is almost never be used for people with learning disabilities because the MHA as a whole is generally restricted from being used for this group.
Let’s just pause here a moment and think about power. At law, in the late 1980’s when F’s case went to court, the doctors and courts found that they had no source of legal authority to make decisions on behalf of those they deemed ‘incapable’. Alongside this, there were concerns (expressed by the Law Society – sorry I can’t find a link to this) that social services lacked any powers to intervene to ‘safeguard’ people from abuse or other risks connected with poor decision making. So the problem the courts are tackling here isn’t F’s empowerment, as such, but the lack of power expressed by medical and social care professionals.
The House of Lords solved this problem by invoking the common law doctrine of necessity. They held that it was lawful under the doctrine of necessity to perform acts of care or treatment for a person who lacked mental capacity in their best interests. In a strict legal sense, this is a defence not a power: calling this a power would be like saying children under the age of 10 have a ‘power’ to murder and steal because of the defence of infancy. But in a practical sense, this operates as a very wide ranging power with few procedural safeguards, yet by calling it a defence we could avoid confronting that reality.
The House of Lords also held that whilst the courts had no authority to make health and welfare decisions on a person’s behalf, they could ‘declare’ whether or not a person had capacity or whether or not a proposed act was lawful, being in a person’s best interests. As various commentators observed, such a ‘declaration’ had no clear legal status; Peter Bartlett called it a ‘security blanket’. But let’s think a minute: why did doctors and courts want a security blanket? What were they worried about? What was the risk here? Legally speaking, the risk was that F herself (or someone on her behalf) might sue them for battery for performing a sterilisation without consent. So in one sense at least, the ‘problem’ solved by Re F is F’s own power, her legal power, to sue professionals for non-consensual acts; the case is about neutralising the legal threat posed by F herself. However, I suspect the odds of F herself mounting a legal action against the doctor were vanishingly small (especially since her mother wanted her to be sterilised, and so would be unlikely to help her sue); the issue would have been the perceived legitimacy of a potentially highly controversial intervention.
Now, clearly the entirety of the MCA is not based on Re F. Concepts like the presumption of mental capacity have been washing about in English law for centuries, and the principle of least restriction had been kicking about for decades. The ‘functional test’ of mental capacity contained in sections 2 and 3 MCA is often cited as one of the Act’s more progressive elements. This took a very twisty route into law – the Law Commission initially proposed such as test, based on standardised tests used in the USA to determine ‘competence’ to consent to medical treatment. In Re C (Adult: Refusal of Medical Treatment)  1 W.L.R. 290, C was the first person to bring a case to court arguing that he had mental capacity and thus should not be subject to a medical intervention that he objected to. A psychiatrist argued that he had mental capacity, but in order to do so had to point to some principled test – during a break in proceedings he asked for the Law Commission’s work on mental capacity to be faxed to him. The court adopted this test, and so it found its way into the common law, before eventually being codifed in the MCA.
By my reckoning, there are fewer than five cases like C’s before the MCA was passed, where people went to court to argue that they had mental capacity. Almost all the cases heard under the declaratory jurisdiction are about medical (and a smattering of social care) professionals asking the courts to cloak their proposed acts (or omissions) with legitimacy. There are a tiny handful of cases about relatives arguing with each other, or with professionals, but mostly the cases heard under the declaratory jurisdiction were much more about ’empowering’ and legitimising professionals, not people who were said to lack mental capacity. When looked at in the round, apart from a few ‘heroic’ cases like C’s, or like Ms B, the overarching impression one has of this jurisdiction (which the MCA is based upon) is a concern with empowering professionals, not disabled people or their families.
By the early 2000s the Law Commission had long finished their proposals for the MCA, but the government was faffing about and had not introduced these into law. There was growing concern among health and social care professionals and civil society about the absence of any clear statutory framework for making health and welfare decisions, and the arrangements for property and affairs were looking tired and old fashioned. There was also a push for more advance planning instruments. So an alliance of organisations campaigned for the Law Commission’s proposals to be made law, and in doing so they introduced some of the most progressive elements of the MCA – the second principle, that people should be supported to make decisions, and the introduction of advocacy.
At this point in time, the Law Commission had proposed that the principle established in Re F – protection from liability for acts of care or treatment in the best interests of a person who lacks mental capacity – be named the ‘general authority’. The alliance of campaigners flagged up that this general authority seemed alarmingly broad, and might include acts by health and social care professionals which the person themselves or their families objected to. The government responded through with a cosmetic alteration: it was renamed the ‘general defence’, But nothing in the statute or the Code made clear what its limits were, or what should happen if disputes arose. Fast forward a few years, and we start to see the Court of Protection seeing a growing number of cases of this nature, cases about detention, cases about Article 8. The courts responded by essentially inventing a set of principles that were never made clear in the declaratory jurisdiciton authorities, nor the Law Commission, nor the statute nor the Codes: that if conflicts break out between the individual and others, or their family and others, about serious welfare issues, then an application should be made to court.
Power relationships and the general defence
So let’s pause and think about what legal relationships the MCA sets up between people who are alleged to lack mental capacity, their families and the professionals who have the monopoly on delivering acts of care or treatment, and thus relying upon the general defence. The individual themselves obviously has to be assessed for mental capacity and then consulted for their wishes, feelings, values and beliefs, and encouraged and permitted to take part in any best interests decision. Clearly this is better than not consulting with the person or involving them, and in that sense the MCA make significant progress on the case of F, where F herself is basically a spare part in this process of decision making. Family, too, must be consulted ‘if it is practicable and appropriate to consult them’, about the person’s best interests, and their wishes, feelings, values and beliefs. Again, this is better than not consulting with them. The fact it sometimes doesn’t happen in practice is not, in fairness, the fault of the MCA.
But let’s look at the bigger picture here. If these are ‘rights’ at all, they are ‘rights’ to be assessed and consulted, whilst professionals assess and make decisions. If the person under assessment or those to be consulted disagree – what is their recourse? The sociologist Max Weber famously defined power as ‘the ability of an individual or group to achieve their own goals or aims when others are trying to prevent them from realising them’. Ok, so if the person said to lack capacity does not want the proposed best interests intervention, but others do, what ability do they have to achieve their own goal or aims? Realistically, they are stuffed. The odds of them being able to challenge this intervention will depend on there being others around them who are willing and able to help them. If families and professionals are in agreement, as in the case of F, then they are doubly stuffed, because that seriously constrains the pool of actors who could help them to challenge the decision. The odds of them making an application to court themselves are vanishingly small (although there are a few cases where this happens, which help us all sleep at night, safe in the knowledge that the MCA ’empowered’ them). Even for families, our research suggests they almost never make applications to the Court of Protection. So what is happening on the ground, in these situations? Does everyone sit down and talk it through and reach a consensus? Perhaps sometimes they do. Or, do people and families sometimes ‘helplessly acquiesce’ (as Munby put in in A and C) in the face of proposals they object to, unsure even of how they could resist them, whether they can afford to, or whether it would be wise to do so given their ongoing reliance on these professionals to deliver the health and social care services they are reliant upon?
I’m not trying to criticise professionals here, nor even the courts. I believe that for the most part, they are doing their best with the legal framework that they have. But I do think it’s really important that we step back and critically assess these claims that the MCA empowers disabled people and their families. Empowerment means that there has to be at least reasonable odds that your will could prevail in the face of opposition, and I just don’t think the MCA really gives disabled people and their families that. Where are the levers of resistance? And what are the effects and costs of using them?
It is of course possible to use the MCA in a progressive way, and some of the provisions proposed by the Law Commission and campaigners will help to do that – provisions about supporting people to make decisions, consulting with them and their families and including them. It can potentially facilitate ’empowerment’ insofar as professionals actively choose to use it in this way. But ultimately, its ’empowering’ potential is largely dependent upon the goodwill of professionals choosing to consult and involve in a non-tokenistic way, and even then they are not bound to respect the views of the person or their family. Ultimately, the way the Act is set up, the will that will prevail is the will of whomever relies upon the general defence, and that will primarily be professionals. In theory, family members could be appointed as attorneys or deputies, in which case their will could prevail. But as I already noted, Lasting Powers of Attorney are problematic for people with developmental disabilities, and welfare deputyship is very rare indeed.
Not all countries set up their legal systems like this. In British Columbia, for example, the system for health and welfare decision making on behalf of people who ‘lack capacity’ starts from a presumption that family, not professionals, should be taking those decisions. My understanding (but I’m too lazy to look this up) is that various states in the USA work on this basis too. Now, I’m not saying this is necessarily any better from the perspective of empowering the individual themselves (just read this story from BC if you doubt that), but these examples do show that the power structures established by the MCA are not natural and God given and other places do this a different way.
The approach taken by the UN Convention on the Rights of Persons with Disabilities (CRPD) (see my introduction here) is much more closely aligned with attempting to empower the individual. The ‘correct’ interpretation of Article 12 CRPD is evolving and often contested, but it certainly places a much stronger emphasis on supporting people to make decisions for themselves, and aligning decisions with a person’s rights, will and preferences. The literature on Article 12 CRPD strongly emphasises the role of friends and family in both supporting people to make decisions and helping to interpret or understand their will and preferences. I’d say this literature places a much stronger emphasis on the kinds of biographical and personal knowledge that friends and family are likely to have, than medical and professional ‘expertise’. In some ways, this is potentially very empowering to families who feel shut out by the MCA, but this comes with a big ‘but’. The literature on Article 12 also places a strong emphasis on support being consensual, so where people don’t want their families to be involved in supporting or representing them, the CRPD approach to capacity would not strengthen their role.
The role of families under the CRPD is not premised on their having some natural right to determine what happens to their relatives, but is based on the idea of consensual relationships of trust that may exist between individuals and their family and friends. Where people want their families involved, mechanisms like Representation Agreements and support agreements potentially really strengthen families in helping to support and advocate for relatives, but they could only be used where people want their families to take on this role. However, the expression of a desire for families (or friends) to take on this role need not be verbal – Representation Agreements, for example, are based on a very low capacity threshold of essentially being able to indicate that you approve of a particular person and enjoy a relationship of trust with them.
I’ve definitely gone on longer than I meant to. But what I wanted to say, in very brief, was this: we need to think a lot more about power and the MCA, and I think we need to critically assess claims that the MCA is empowering. I’m not saying that everything about the MCA is rubbish, or that it can’t be put to good use, or that campaigners back in the early 2000s didn’t do a great job to get some progressive things written into the statute. But at the end of the day, when push comes to shove, this is not an instrument that was designed to help disabled people resist the power of those around them.