Several weeks ago I was very kindly invited to give a paper at the Institute of Psychiatry concerning the Convention on the Rights of Persons with Disabilities and what impact it might have on treatment for disabled people. They asked me to look beyond the issues affecting people with mental health needs and consider other disabilities too. Afterwards I said I’d place the paper on this blog and then err did not.
But here it is! The paper had to be cut to make it work as a blog post and I have added some references and as many links as I can to make it useful to readers who were not present.
The paper made three arguments:
1. If we take the Convention on the Rights of Persons with Disabilities seriously (I’m going to assume for the sake of argument that we should) it has very radical implications for medical treatment for disabled people. Since the definition of disability in the CRPD is very broad this means a broad spectrum of medical practices will be affected.
2. The legal systems of the states which have so far ratified the CRPD have not taken the radical implications of the CRPD as seriously as they should. Since I’m primarily an English mental health lawyer I’m most aware of its potential for impact in the areas of mental health and mental capacity law here but the CRPD could have impact in other areas of medical practice, especially neurological and sensory disabilities.
3. There is now a significant medical literature which considers the implications of understanding the patient as a partner in his or her care and research findings in this field suggest that this is not only ethically sound practice, but may also ensure improved communication around treatment and care planning, and deliver better therapeutic outcomes for the patient. When we examine the really problematic question of medical treatment we may see more scope for improving practice in achieving the ends of the CRPD through examining this literature than we do through the legal literature.
A few background details on the Convention:
The pathway from proposing that a convention on the rights of disabled people be drafted in 2001 to opening the CRPD to state signatories in 2006 was unprecedentedly quick. By contrast it took 10 years to draft the Convention on the Rights of the Child.
Disabled people played a significant role in drafting the CRPD, having rallied behind the slogan ‘Nothing about us without us’ activists helped to form an International Disability Caucus which played a central role in drawing up the first draft of the Convention.
So far 124 states including the UK have both signed and ratified the Convention.
There is also an Optional Protocol to the Convention which allows individuals to take complaints to the Committee on the Rights of Persons with Disabilities when they feel their state has acted in violation the CRPD. The jurisprudence of this Committee is still very limited.
How does the CRPD define disability?
The CRPD definition of disability is found in the preamble:
“An evolving concept . . . (that) results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”
And in the second sentence of Art. 1:
“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”
Taken together these statements have been generally interpreted as meaning that the CRPD endorses a social model of disability. Disability is construed as arising from an interaction between individual impairment (hearing loss, blindness, mental distress) and environmental deficiencies such as noise, the absence of assistive technology or compassionate attitudes which render this impairment disabling. For mental health lawyers it is of great significance that the definition of disability in the CRPD is inclusive of psychosocial disability.
Which sections of the CRPD are relevant to medical treatment of disabled people?
Art 25(d) of the UN Convention on the Rights of Persons with Disabilities (CRPD) requires state parties to ensure health professionals deliver healthcare on the basis of free and informed consent.
Personally, I am sceptical about the role consent can play in ensuring that treatment for people who have historically experienced profound discrimination can play in driving up standards of human rights protection. In many circumstances disabled people may not have experienced themselves as bearers of rights and may simply not have the skills necessary to withhold consent or to challenge abuses of this right. In practice policing abuse of this right has been poor, relying predominantly on civil litigation mechanisms such as the tort of battery which may be difficult for disabled people to access.
Art 5(2) of the CRPD prohibits all forms of discrimination on the basis of disability. Most states still retain direct discrimination against people with mental disorders, who are typically the only members of society who can be routinely detained in hospital and treated either in hospital or in the community without their consent. But this measure has far greater significance in other areas of healthcare delivery when it comes to the continued widespread practice of indirect discrimination in the delivery of healthcare to disabled people.
Art 17 protects the right to physical and mental integrity on an equal basis with others. Although the full implications of Art 17 are not well understood it seems evident that, for example, English caselaw which prohibits the forcible feeding of people detained in prison but permits the forcible feeding of people detained in hospital for a mental disorder even in the absence of a risk to the individual’s life is wholly inconsistent with this wording.
Art. 12(2) of the CRPD requires state parties to ensure that all persons with disabilities enjoy legal capacity on the same basis as others.
Art 12(3) places a duty on state parties to ‘take appropriate measures to provide access to persons with disabilities to the support they may require in exercising their legal capacity.’
Art 12(4) 4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and
preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
Despite the banal wording this is probably the measure which has the most significant implications for medical care for disabled people. There is I think at least an academic consensus that Art 12 implies even if it does not absolutely require state’s to prefer support disabled people to make their own decisions on all matters which affect their lives, rather than to allow others to substitute their decisions. Even if those substituted decisions are made on a best interests basis.
If we break this down and assume that state’s ratify the CRPD in good faith and intend to honour their obligations:
What does it mean to ensure that all disabled people including people who may have already been deemed to have reduced mental capacity to enjoy legal capacity on the same basis as others?
Well legal capacity can be impaired in different ways. The state can simply have removed one’s capacity as a status. In some jurisdictions loss of capacity is largely a legal decision resulting in a change of legal status in which another person may be temporaily or permanently empowered to make decisions on behalf of the incapacitated person on some or all matters. The loss of legal status may also result in a loss of the power to enjoy the right to vote, to marry, to enjoy sexual relations and so forth. Such a situation is clearly inconsistent with Art 12(2) CRPD.
But one may retain legal standing, the power to take legal decisions about say medical treatment, but lack the practical degree of legal agency to exercise this standing. It is typically presumed that it is people who have compromised mental capacity who may be most affected by the implementation by Art 12 CRPD. But the language of the CRPD is not restrictive, and the practical barriers to engagement are often far more considerable than absolute legal barriers.
The primary mechanism endorced by the United Nations Committee on the Rights of Persons with Disabilities, the Special Rapporteur, an increasing number of state parties to the CRPD (including the UK) and many academic commentators and disability activists is the idea of ‘supported decision-making’. This has been defined as:
“Supported decision-making can take many forms. Those assisting a person may communicate the individual’s intentions to others or help him/her understand the choices at hand. They may help others to realize that a person with significant disabilities is also a person with a history, interests and aims in life,and is someone capable of exercising his/her legal capacity. The individual is the decision maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and preferences of the individual. Even when an individual with a disability requires total support, the support person(s) should enable the individual to exercise his/her legal capacity to the greatest extent possible, according to the wishes of the individual.” (UN Handbook for Parliamentarians)
there are some very sophisticated analyses of how supported decision-making could be realised in practice see: Michael Bach and Lana Kerzner’s proposals for the Law Commission of Ontario and also Piers Gooding’s review of the concepts usefulness in mental health law (sorry subscription required).
In England and Wales there are at least two significant barriers to supported decision-making becoming the new norm. It is near impossible to argue that our Mental Capacity Act could ever be consistent with Art 12 CRPD. Peter Bartlett points out that you can’t reconcile an Act that relies on finding an underlying ‘impairment of, or a disturbance in the functioning of, the mind or brain’ (s.2(1) MCA 2005) with a disability neutral threshold for capacity determinations. And our government has so far stuck its fingers in its ears and is going la la la not listening on this. See para. 104 of the UK initial report on the CRPD (warning:pdf).
The other big barrier to supported decision-making is that it cannot simply be bolted on to the MCA framework. At the moment we have a framework in which people are presumed to retain decision-specific capacity unless evidence suggests otherwise, at which point they lose capacity and a best interests decision must be substituted instead. The substitute decision made under s.4(6) MCA is NOT a supported decision and the wishes and feelings of the individual lacking capacity are only one of the factors the decision-maker must take into account when reaching her decision.
So the CRPD presents challenges when it comes to the medical treatment of disabled people. It is structured around the normative values of consent, non-discrimination, respect for individual autonomy, physical integrity and human dignity. In practice domestic legal systems, and currently permitted medical practices may fall well short of the values the CRPD espouses. These problems are particularly glaring when we consider the most commonplace bioethical dilemmas, care at the beginning and end of life, care and treatment of people lacking capacity, care for people experiencing severe mental distress.
There is however, another way of examining this issue. For at least the last four decades, clinicians have been trying to find ways to get people to take their meds. We have shaken off offensive terminology such as compliance and adherence in favour of concordance and now ‘shared decision making’, but the ultimate end of such projects is the same. If and when patients and doctors are able to effectively communicate about their views on treatment, doctors are more likely to identify effective treatment plans and patients are more likely to endorse and follow the treatment plan adopted. The normative value underpinning shared decision making is improved therapeutic outcomes for patients, coupled perhaps with better ongoing therapeutic relationships.
Because doctors are doctors and not lawyers, it is not enough for them to merely assert that shared decision making is an appropriate practice to adopt on ethical grounds alone. They would like randomised controlled trials to make the point for them. Unfortunately the numbers have rather let them down. A point rather poignantly made by this Cochrane review which found only two studies looking at the benefits of shared decision making in mental health, neither of which demonstrate significant outcomes in terms of clinical benefits or reduced hospital admissions. But at least neither study demonstrated that any harm resulted from shared decision making either. Phew.
More generally observational studies demonstrate that psychiatrists are not always very good at shared decision making. But at least one systematic review suggests they are not necessarily worse than other doctors.
We have an impasse here. Because the norms that shared decision making is designed to attain are different to those which supported decision making is intended to attain the two approaches cannot be collapsed into a single entity. They are not the same. And yet it would seem ironic that whilst doctors work hard to find the evidence they need to justify sharing decision making with their patients (just writing that sentence makes me feel all peculiar – I mean seriously?) a significant international human rights document is lending support to their view and being almost wholly ignored.