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Wednesday, 24 August 2011

Is the Mental Capacity Act 2005 too paternalistic?

The concept of mental capacity sits at the junction of two of the most powerful discourses in our society today: autonomy, and paternalism.  The Mental Capacity Act 2005 (MCA) is concerned with autonomy in two interlinked senses:
  • Autonomy meant as the right to determine one's own course, free from external interference (closely linked to the concept of negative liberty and Liberalism in political philosophy);
  • Autonomy meant as the capacity for self-governance of one's actions (often called 'personal autonomy' in Philosophy).
At base, the MCA serves a gatekeeping function between actions (or inaction) predicated upon discourses of autonomy or paternalism.  (Very) roughly put: if you have the capacity for autonomous (self-governing) decision making, you should enjoy the right to autonomous (free from interference) decision making.  If you don't have the capacity for autonomous decision making, then paternalistic interferences with your affairs are permitted.  In theory, under the MCA a person should not be denied the right to make decisions they are capable of making; but equally they should not suffer the consequences of decisions they are incapable of making.

It is, I think, rather hard for someone embedded in a modern, liberal democracy with welfarist leanings to disagree with the basic tenets of the MCA.  It has been widely welcomed as an autonomy-promoting Act, I don't think it's excessive to say that some have welcomed it as an emancipatory Act in some regards.  The Draft Code of Practice states:
'The Act is intended to assist and support people who might lack capacity and to discourage those who care for them from being overly restrictive or controlling. But the Act also aims to provide an appropriate balance between an individual’s right to autonomy and self-determination with the right to safeguards and protection from harm where that person lacks capacity to make decisions to protect him/herself.' [3.2]
Manthorpe and colleagues wrote that the Act would ‘enhance personal autonomy’.  Antaki and colleagues write that the Act 'enshrines in law the right to make one’s own decisions, whatever one’s mental impairments' (which isn't quite correct; because incapacity is defined by reference to mental impairment, but I'll come on to that issue in a bit).  In any case, the Act has largely been welcomed as a triumph for autonomy over paternalism.  In an international context, and in a broader historical context, this is probably a fairly accurate assessment (see, e.g., this article - pdf -on Lithuanian mental capacity laws).  But if we were to get purely technical about it, the MCA was introduced because there was no satisfactory mechanism to enable paternalistic interferences.

The proximate case that kicked off the journey towards the MCA was of course Re F (1990), a case where doctors applied to the court for legal protection against litigation or even prosecution for battery should they perform a sterilisation on a woman with learning disabilities who could not consent to it.  In Re  F Lord Goff expressed concern that:
...there is no English authority on the question whether as a matter of common law (and if so in what circumstances) medical treatment can lawfully be given to a person who is disabled by mental incapacity from consenting to it. Indeed, the matter goes further; for a comparable problem can arise in relation to persons of sound mind who are, for example, rendered unconscious in an accident or rendered speechless by a catastrophic stroke.... In the case of mentally disordered persons, they may require care of a more basic kind - dressing, feeding, and so on - to assist them in their daily life, as well as routine treatment by doctors and dentists.
The implicit suggestion in Lord Goff's comments are that even the most mundane acts of care require consent, and there was no clear legal position on the status of acts that interfered with bodily integrity without consent.  A series of cases followed where professionals and family members wanted to do things to people who were deemed incapable of consenting to them, things like deciding where they should live (Re S (Hospital Patient: Court's Jurisdiction) [1996] Fam 1 (CA)),  withdrawing life-sustaining treatment, or use force to impose treatment on a person (Norfolk v Norwich Healthcare (NHS) Trust [1996] 2 FLR 613).  It seems highly doubtful that these cases represented the only instances of non-consensual interference with decisional autonomy, or bodily integrity.  They weren't new acts, but the concern about them was new.  The felt need for the MCA is probably better understood as responding to a growing shift towards autonomy in the wider culture, which posed a problem for longstanding paternalistic practices, as arising from a technical gap in the law.

I'm not arguing that the MCA is not an incredibly useful and important law from the perspective of promoting the autonomy of people with disabilities, but I am saying that the initial impetus for the act was because, in the words of the Law Commission:
‘There was no longer any machinery for assuming responsibility for every aspect of a completely incapacitated person’s life.’ [3.5]
I recognise, of course, that during the build up to the Act many activist groups were involved in promoting the autonomy-giving aspects of Act (indeed, it was largely activist groups who kept up the momentum for the Act to be passed in law at all, almost a decade after the Law Commission had finished it's research).  But if the Act was to increase the autonomy available to people with diagnoses of mental disorders, you could definitely make a case that the way it did so was through imposing the 'rule of law' on practices that - whilst they might technically occupy a legal grey area - were undoubtedly longstanding, widespread and widely socially sanctioned.  The Act created no new offences of 'interferences with autonomy'; indeed it created no straightforward rights to autonomy;  it created a 'general defence' for professionals and caregivers who were concerned that Lord Donaldson's 'flak jacket' of consent was a bit thin for comfort.  It created a means for people to continue to do things they were already doing, but attempted to overlay those acts with a legal framework that would remove their arbitrariness, and require that those acts were justified within discourses that gave more than a passing nod to autonomy.

The autonomy of the Mental Capacity Act 2005

In a global context the MCA is undeniably fairly progressive among mental capacity laws.  As I have discussed previously, in their research prior to the MCA the Law Commission rejected outdated and restrictive 'status' and 'outcome' approaches to mental capacity, favouring a functional approach instead.   Crucially though, incapacity is still established by reference to 'an impairment of, or a disturbance in the functioning of, the mind or brain' (MCA s2(1)), what the Law Commission call the 'diagnostic criterion'.  Functional approaches have themselves been criticised on the basis that 'once disability is established, no further questions [are] asked' (Dhanda, 2006), and hence they function in practice like status tests.  Dhanda criticises the functional test on the basis that cultural presumptions that all people with disabilities lack legal capacity shift the burden onto the disabled person to prove that they have capacity; a tendency that s1(6) MCA ('A person must be assumed to have capacity unless it is established that he lacks capacity') and s2(3) MCA ('A lack of capacity cannot be established merely by reference to (a)a person's age or appearance, or; (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity) strive to stem.  Whether these provisions are effective in dislodging cultural presumptions of incapacity is another question entirely; one which, I suspect, is very dependent on the context of the relevant decision.

Elsewhere, Dhanda and others have written about the importance of supporting people to make decisions, before presuming that they lack incapacity.  Dhanda expresses this as an understanding of autonomy that is grounded in an acknowledgement that it rests - for all of us - upon interdependence, not independence. She reminds us that everyone seeks help at times making decisions.  On paper, the MCA stands up quite well to this criticism with the requirement that 'A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.' (s1(3) MCA) and s3(2) MCA ('A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means)').

If one accepts the substantive premises of the MCA, one could argue that it still falls down in terms of promoting autonomy through accessible procedural safeguards against abuse of power and misapplication.  Certainly I would have a lot of sympathy for that argument; indeed a study of the adequacy or otherwise of the procedural mechanisms of the Act forms a substantial part of my research.  However, setting aside this issue for now, there are - at an international level - debates about the validity of the very concept of legal incapacity in relation to mental disorder. The European Disability Forum have said 'the concept of incapacity must be rejected from the outset' (doc).  These debates present a fundamental discursive assault on the paternalistic elements contained within the Act, and consequently any paternalistic interferences it permits.  In particular, this powerful counter-discourse against the very concept of 'mental capacity'  has centred around Article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD): the right to equal recognition before the law.

Article 12: The Convention on the Rights of Persons with Disabilities

The CRPD has a very different history to the MCA.  Although the UN had previously considered the matter, negotiations began in earnest only after a coalition of international disability NGO's adopted a resolution in 2000 - called the Beijing Resolution - calling on world leaders, governments and organisations to initiate the process of establishing a dedicated Convention addressing specific human rights issues confronting persons with disabilities.  And so the CRPD was born.  It is a document well worth reading in its own right, but here I want to consider whether Article 12 of the CRPD may present difficulties for the concept of 'mental capacity' under the MCA.

Article 12(2) states:
States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life
'Legal capacity' is not defined in the CRPD itself, but documents surrounding its implementation help us to unpack what this means a bit more.  An international group of legal academics wrote a legal opinion on Article 12 (here, pdf), in which they stated:
'Legal capacity consists of two integral components: the capacity to hold a right and the capacity to act and exercise the right, including legal capacity to sue, based on such rights.'
In England and Wales, and under the European Convention on Human Rights, there is no distinction between disabled and non-disabled persons as rights holders, but the ways in which rights may be interpreted may be influenced by a diagnosis or disability.  In one sense this is absolutely correct as rights must be sensitive to health problems or disabilities - otherwise cases like Bernard v London Borough of Enfield (2002) or anti-discrimination cases would never get off the ground.  But a medical diagnosis may also permit less welcome interpretations of rights, particularly with regard to restrictions on autonomy.  Herczegfalvy v Austria [1992] is a good example of this; where the court concluded:
'it is for the medical authorities to decide, on the basis of the recognised rules of medical science, on the therapeutic methods to be used, if necessary by force, to preserve the physical and mental health of patients who are entirely incapable of deciding for themselves'
'a measure which is a therapeutic necessity cannot be regarded as inhuman or degrading'
Although the court then stated that it must be convincingly shown that 'medical necessity' existed, it is arguable that this places too much power in the hands of medical professionals, and may fail to take into account other - non-medical - and autonomy-based considerations.  

The CRPD's requirement for 'the capacity to act and exercise the right, including legal capacity to sue, based on such rights' may present a specific problem for the concept of 'litigation capacity'.  In England and Wales, if a person is found to lack 'litigation capacity', then a solicitor cannot take instructions from them, and litigation can only proceed if a litigation friend can be found to instruct the solicitor on their behalf.  Where no suitable person can be found, the Official Solicitor (OS) acts as a "litigation friend of last resort".  The OS is an absolutely vital mechanism for access to justice for people who are not able to conduct litigation themselves to protect their own rights.  In fact, the support of litigation friends and a body like the OS is absolutely necessary for ensuring Article 12(3) CRPD is upheld:
States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
The key issue though, is how this is done, and whether that is compatible with Article 12(4):
...safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person... and are subject to regular review by a competent, independent and impartial authority or judicial body
Under the Court of Protection Rules 2007, pdf, a litigation friend can only be appointed to act for an adult by an order of the Court, who must be satisfied that they 'can fairly and competently conduct proceedings on behalf of that person' and have no 'interests adverse to those of that person.'  As far as I am aware (and I may be entirely wrong) there are no automatic procedural safeguards for the regular review of this appointment in England and Wales - although a review could be triggered by direct application to the Court of Protection under r144.  Whether that mechanism is accessible to a person who requires a litigation friend is another matter, and one that I would very much welcome comments on.

One area where the MCA and the CRPD may come apart is in situations in considering whether litigation friends always 'respect the rights, will and preferences of the person'.  The literature surrounding the CRPD stresses the importance of 'supported decision making', as opposed to 'substitute decision making'.  Edah Wangechi Maina, Vice-Chairperson of the Committee on the Rights of Persons with Disabilities at the UN, writes (doc) that:
What the Convention requires is that the support should be based on trust, be provided with respect and not against the will of the person with disabilities. (p3)
Whereas... substituted decision making legally takes the place of an individual, supported decision making may involve providing advice or information, discussing options and consequences, communicating an individual's wishes or decisions to third parties in order to interpret the will of an individual. All forms of personal support shall empower the individual, give effect to his or her wishes and be free from conflicts of interest. (p2, emphases mine)
It is the requirements that the support available to help persons with disabilities should be based on trust, not be provided against the will of the person with disabilities, and should give effect to his or her wishes that is problematic for practice in England and Wales.  I can think of several high profile cases - Lee Gilliland, RP v UK, A Primary Care Trust v P (2008), where the expressed wishes of person have come apart from the case presented by the OS.  In at least two of these cases, the degree to which the support provided by the OS was 'not against the will of the person with disabilities' and was based on trust is definitely in doubt.  Are these cases, then, contrary to the spirit of the CRPD?  There is no reliable information in the public domain about Lee Gilliland, so I will confine my comments to what is contained in the judgments relating to RP v UK and A PCT v P.  I should say, I am not sure how representative RP v UK is of 'litigation capacity' disputes in England and Wales - and in any event the case is due to be heard before the ECtHR.

In conducting the litigation in the way that he did, the OS acted in what he thought was the best interests of RP and P, even though this went against their expressed wishes.  This is precisely what is prescribed by the mechanisms of the MCA - if a person lacks capacity to make a particular decision (in this case, decisions about litigation), then decisions should be taken on their behalf in their best interests (MCA s1(5)).  Decision takers must make efforts to take into account the past and present views of the relevant person, but they are not determinative of best interests (MCA s4).  This is not 'support' for decision making, so much as substitute decision making.  But there is, possibly, a get-out clause of sorts within the CPRD that might permit those in a supporting role to overrule the wishes of the relevant person.  In the same piece, Maina writes:
'While acknowledging that the role of the supportive decision maker is to promote the self determination of another individual, the supportive decision maker shall not assist in giving effect to a decision that is otherwise illegal or is in violation of the principles expressed in the Charter of Rights and Freedoms.' (p4)
This could be interpreted to mean that where giving effect to the wishes of the relevant person would result in a violation of their rights, then decision takers do not have to support them in this.  I am not sure, though, how well this model fits to the cases I have just described.  It is hard to say what 'rights' of RP's would be violated had the OS decided to contest the adoption of her child, as per her wishes - best interests seems, in my view, to set a rather lower standard for paternalistic intervention that violations of rights (at least as they have been interpreted in domestic and European courts).  If one assumes that the outcome - the adoption of RP's child - would have occurred whichever way the OS proceeded, two questions remain: a) was futile litigation less in RP's best interests than the decision not to contest the adoption; b) does RP have a right to litigation that may be futile, despite her incapacity?

In the case A PCT v P, P expressed a desire to remain living with his mother, but professionals were concerned that there was a longstanding history of his mother stopping his anti-epilepsy medication, which had resulted in him being admitted to hospital with life-threatening seizures.  The court felt that it was difficult to determine the authenticity of P's expressed wishes, as his 'perspective' was so 'enmeshed' with that of his mother's.  The CRPD of course includes rights to protection from abusive situations (Article 16), and Article 12 itself requires safeguards for when where the 'support' a person receives for their decision making is subject to conflicts of interest  (such as, arguably, was the case with P's mother) - but it offers few tools for us to detect 'undue influence', or guidance on how to proceed when the person themselves expresses a desire to remain within that situation, or to continue to seek support from a conflicted party.  This critique, of course, rests on the assumption that something must be done to prevent suffering on the grounds of a person's disability; and this may well be where the CRPD presents its most radical challenge to our ways of thinking about disability and harm in the UK.  It would be quite possible for disability rights proponents to counter that intervention in situations where a person's expressed wishes drive them towards harm, but their expressed wishes are subject to malign influences, may be appropriate - but it should not be justified on grounds of disability.  In which case, for instance, we should consider (coercively) intervening in cases where people without disabilities are subject to forms of domestic abuse.  I am not sure if this is what the drafters of the CRPD would advocate, but I cannot believe that discussions of this nature did not go on.  I would be very interested to hear more detailed argument on this matter.

The diagnostic criterion: Is it possible to de-couple disability and incapacity?

The most challenging aspect of the CRPD is the requirement that we de-couple the concepts of mental disorder and intellectual disability from (legal and discursive) justifications for paternalistic interferences with autonomy.  This issue extends far beyond litigation capacity, and would encompass issues like the justification for restraint under s6 MCA, the prohibition on sexual relations for persons who 'lack the capacity to consent', and detention under the Mental Health Act 1983 or the deprivation of liberty safeguards.  I have to confess, I really struggle with some aspects of this.  I fully acknowledge the abuses of restraint and detention, the problems with the procedural safeguards, the reality that often detention or restraint may in fact not be in a person's best interests.  But at a personal level, I find it hard to disagree that there are situations where it is necessary and appropriate to use coercive measures to prevent harm that a person does not understand they are bringing upon themselves.  The European Disability Forum writes (doc)
There will be cases where persons with disabilities take decisions that supporters do not perceive to be in their best interest (such as giving money to other people or organisations, the purchase of goods that the individual cannot afford, or the cancellation of a work contract). While maintaining their right to take decisions and make mistakes, the supporters must do their best to protect the supported person from exploitation, abuse and personal harm. EDF therefore calls upon all States Parties:
  • to oblige support persons to demonstrate that they have informed the supported individual by all possible appropriate means about the consequences of any important decision;
  • to create a mechanism to prevent abuse, including possibilities to ask for nullification of contracts in case the person was intentionally exploited (see Article 16 CRPD), abused or even injured (Article 17 CRPD);
  • to create administration (out-of-court) procedures that are easily accessible for the supported person in case of a conflict with the supporter;
  • to address the question of the liability and insurance of the supporter.'
They also advocate the development of mainstream methods of protection for abuse and exploitation for all.  I would welcome the creation of more accessible procedures for dispute resolution between decision takers and 'P' under the MCA.  The Court of Protection is a very costly and inaccessible way to resolve disputes (one of the pieces of data that I would love to obtain, is how many of those applications to the Court of Protection are initiated by 'P' himself.)  But provision of information, dispute-resolution procedures, nullification of contracts, do not seem, to me, to address situations of near and present danger.  And furthermore, there seems to me to be an inherent problem with dispute resolution mechanisms if we are to say that those supporting decisions should always be giving effect to the will of the person they are supporting.  What is the point of dispute resolution if the outcome is known in advance?  In the alternative, it seems the concept of incapacity must be brought in by the back door to permit the relevant person's will to be overruled.

I have been searching, recently, for any work within the disabled people's movement on the use of physical restraint and coercive measures - either arguments to the effect they should never be used - no matter what harms might befall a person, or arguments that sets out under what circumstances it might be acceptable.  It may well be testimony to my poor research skills, to publishing biases, or biases within search engines, but I couldn't find anything to that effect.  I hope such work is out there, or in preparation, because otherwise we have a situation where the only work on the use physical restraint and coercive measures is representative of the views of health and social care professionals and academics working in those traditions.

In recent years there have been calls to abolish coercive treatment and detention on grounds of mental illness (e.g. Dawson and Szmukler, 2006; see also the proposals of the Richardson Committee 1999 - outlined in this Mind e-Newsletter), but these have retained the concept of mental incapacity, and permit paternalistic interventions in those cases.  And the concept of mental capacity, at least under the MCA, again is tied to the 'diagnostic test' (see this post, for discussion) and cannot easily be decoupled from the concept of disability.  Proponents of the 'fusion' of incapacity and mental health legislation argue that if we need legislation to protect the public from dangerous individuals, such legislation should apply to all equally, and not be applied on the basis of a diagnosis of mental illness.  Perhaps then for those seeking to abolish the very concept of mental incapacity, they might advance an argument that legislation permitting paternalistic interferences where a person is at risk of harm should apply to all equally.  Where liberal hackles are raised by such a prospect, we should critically examine why so much rests on diagnosis?

I am not the first person to consider the ways in which the CRPD may be challenging to law and practices within England and Wales.  Peter Bartlett considers some of these, and other, issues in this much more eloquent piece.  He comments:
There is a risk that psychiatric professionals simply write the most challenging aspects of the CRPD off as absurd, or adopt a somewhat hurt and defensive posture. That would be unfortunate as the human rights principles on which the CRPD is based are sound, and are likely to be broadly shared by most members of the psychiatric professions.
I would only add to this that for the health and social care, and legal professions to take seriously the CRPD and the concerns it seeks to address, rather than fudging it's language to fit existing practice, they may need more guidance from those at the heart of the CRPD project in addressing these tricky situations.  It a really good thing to think about ideas that challenge us; engaging with counter-discourses helps us locate long-cherished principles that have become so sedimented in our thinking they have escaped critical examination.  And so on that note I leave you with this first person account of being deprived of legal capacity, and this first person account of 'benevolent' institutionalisation from Amanda Baggs, which is as powerful a critique of paternalism as I have ever read.

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