Substitute Decision-Making and Mental Capacity
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By Georgina Terry
Introduction
“The CRPD is regarded as having finally empowered the ‘world’s largest minority’ to claim their rights, but perhaps it is not unusual for new human rights treaties to be drenched in hyperbole and hopefulness.”
Certain groups throughout history have been regarded as less deserving of equal rights and instead are subjected to discriminatory treatment or paternalistic protection by the law. Pitied and viewed as objects rather than active subjects within the framework of legal rights, adults with mental impairments are deemed to lack capacity to make decisions based on their impairments and cognitive functioning, and instead decisions are made for them using substitute decision- making. The Convention on the Rights of Persons with Disabilities (‘CRPD’) has been hailed as a great landmark in the struggle to reframe the needs and concerns of persons with disabilities in terms of human rights, and represents a paradigm shift away from a social welfare response to disability to a rights-based approach.
As the concept of ‘substitute decision-making’ runs at the heart of this dissertation, it is critical to make clear which definition is being considered as it can mean different things in different systems. Often in the United States it means that A decides for B on the basis of A’s value systems, whereas under the Mental Capacity Act 2005 (‘MCA’), A decides for B on the basis of B’s best interests. Throughout this dissertation I will refer to the second definition. This dissertation will commend the substantive quality of Article 12 of the CRPD, ‘Equal Recognition Before The Law’, but will question whether the United Nations Committee on the Rights of the Persons with Disabilities (‘the Committee’) provides a realistic or desirable interpretation of its implication on the best interests framework used in England and Wales to make medical treatment decisions on behalf of adults who lack capacity. An argument will be advanced that the CRPD provides an important and highly progressive lens through which mental capacity laws must be reassessed, but that the Committee’s interpretation that substituted decision-making regime should be abolished is naïve and utopian in its view of society. Instead, a more purposive and moderate interpretation of Article 12 will be advanced, and both statutory and practical recommendations will be made.
The dissertation will be structured as follows: Chapter I will outline the progressive text of Article 12 and its erroneous and extreme interpretation by the Committee. The CRPD’s philosophical underpinnings will then be detailed, and I will contend that these are laudable but the Committee has elaborated on them overly simplistically. Critically, however, the Committee’s interpretation is not binding, and therefore the following chapters, in their assessment of compliance, may take a broader and moderate view. Chapter II will contextualise the MCA and demonstrate that, on a literal reading, its basic architecture is incompatible with even the broadest interpretation of the Article 12, as it requires that an individual’s wishes and feelings be considered, but not necessarily respected. I then explore whether broad CRPD-compliance can be seen to be developing in the Court of Protection through purposive implementation of the best interests framework, and I will contribute novel qualitative data to contribute to the discussion framed by Donnelly and Ruck Keene, to show that some, more progressive, judges have proactively incorporated the spirit of the CRPD into their rulings and language. This evolution is undoubtedly bringing the UK closer to broad CRPD compliance, but I will argue that such compliance remains very much within the discretion of individual judges, as the lack of hierarchy within s4 of the MCA constrains this purposive evolution. Statutory and practical changes are required to obligate other judges to justify any departure from a patient’s wishes and feelings. In light of this, Chapter III will set out proposals by the Essex Autonomy Project7 (‘EAP’) and the Law Commission, and it will be argued that a ‘rebuttable presumption’ that an individual’s wishes and feelings be followed would be a desirable addition to the best interests framework, not least because of the fact that it can and should be rebutted. Drawing upon parallels with feminist philosophy, I will distinguish between formal and substantive equality and will construct a more relational definition of autonomy to show that ‘protection’ and ‘vulnerability’ should not be snubbed in light of the CRPD, and substitute decision-making retains its pertinence in cases of undue influence and exploitation. Indeed, while this may appear to be an anti-CRPD argument, I will show that this argument actually fits within the wording of the Article 12(4) requirement that there be “respect” for the “rights, will and preferences” of the person – respect for an individual’s rights may require a decision-maker to diverge from their explicit will and preferences, and therefore a more moderate, non-Committee interpretation of the CRPD would allow the UK to fulfill their compliance obligations while maintaining elements of substitute decision-making.
