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Chapter 1
The Legal Landscape and the
Challenge for Practitioners
Introduction
Consider the following:
Margo is a 68-year-old woman who is in the early stages of Alzheimer’s. She gets confused periodically, but most of the time her memory is moderately good. She lives with her adult son who refuses to let social workers see her, although they were alerted to Margo’s case after a concerned neighbour contacted the local authority. The very few times social workers have been able to see Margo, her squalid living conditions were thought to be contributing to her poor health: the house was extremely dirty with evidence of a rat infestation and she appeared to be not eating regular meals, with her weight dropping to dangerously low levels. In addition, her son exercised a worrying control over her. For instance, the fridge and pantry doors had locks attached, and Margo’s son had the only keys. When asked about this, her son explained this was a necessary measure to prevent Margo from overeating. It is clear to the social workers that Margo’s health and well-being are at risk in this situation – not only does her physical health seem to be suffering but also her Alzheimer’s seems to be getting rapidly worse. Social workers think that both of these can, at least in part, be attributed to the son’s power and influence in the house and the emotional distress that he causes her. Margo is adamant, however, that she wants to remain at home with her son. The social workers have to assess whether Margo has capacity to decide about her living and care arrangements and if not, whether it is in her best interests to move her to a care facility and prevent contact with her son.
If you were the social worker, what would you do? What initial values and considerations would inform your decision? In the past, practitioners may have intuitively felt an obligation to intervene in situations like these, regardless of the paternalistic overtones. But in recent years our concept of mental capacity has altered the presumption towards paternalistic action, with the Mental Capacity Act 2005 in England and Wales (MCA) transforming the way in which practitioners in social care, medicine and the law are legally obliged to approach the decision-making capacities of individuals with impairments. The presumption of capacity in the first instance indicates an autonomy-based rather than paternalistic approach to deciding questions about a person’s care and treatment. Within this framework, however, the appropriate course of action to take in Margo’s case is not immediately clear – if she has the capacity to decide to remain at home and in contact with her son, does this mean practitioners do nothing? Equally, if she lacks capacity, does this mean practitioners ignore her deeply held values, which might include a relationship with her son and living in her own home? This dual impulse to respect the choices of individuals while protecting and safeguarding them from harm remains a fundamental tension at the heart of many dilemmas facing practitioners.
This tension is easy to state. Ten years of experience of the MCA in action has also made clear that it is impossible to pretend that individuals exist in isolation. Rather, they are situated within complex relationships that can support and enable, as well as obstruct and disable, their ability to decide, to act and to secure their own interests.
However, to date, what is all too often lacking is a clear framework within which to resolve this tension and answer these questions. By challenging the UK to abolish ‘substituted’ decision-making in favour of supported decision-making, the Committee on the Rights of Persons of Disabilities has made the tension even more acute, but without, on a proper analysis, assisting us to resolve it.
By drawing together the insights of a philosopher and a practising barrister, we seek in this book to provide a set of ethical principles that can inform and guide both the assessment of capacity and the making of best interests decisions under the MCA. These principles, we suggest, can help answer the questions of when and how professionals can intervene in a person’s life to secure her greater autonomy, while respecting her as an individual – as a subject, not an object. In so doing, we suggest that we can start to bring home – to operationalise – the Convention on the Rights of Persons with Disabilities (CRPD) even without changes to the law.
Our key message is that we cannot properly deploy the MCA without a set of ethical skills. To that end, and in the body of the book, we aim to guide practitioners through ethical reflection in three key areas:
1. The role of relationships in mental capacity: why and how relationships matter in developing capacity and establishing supportive decision-making mechanisms; the defining features of those relationships that promote or diminish autonomy.
2. The dialogical skills which enable and empower individuals with impairments: what these dialogical skills are and how to cultivate them; the importance of critical awareness and understanding of how prejudices can impact on dialogue; how dialogue reveals aspects of capacity that may not be fully captured in the functional test and can impact on the outcome of capacity adjudication; reasons why an individual’s participation is important in both capacity and best interests assessments.
3. The role of the capacity and best interests assessor: how social care workers, clinicians and legal practitioners can impact positively or negatively on the autonomy and agency of individuals; how values inform and orientate capacity assessments; the need for transparency in capacity and best interests adjudications.
This chapter places what is to come later in the book in its context, providing an overview of the MCA, the inherent jurisdiction of the High Court, and the CRPD. We also explore the question of whether capacity is ‘in one’s head’ or whether it is – at least in part – a function of the interaction between the person and her relationships. While some case law suggests the former, we ultimately suggest that it is both possible and legitimate to interpret the MCA in the latter fashion, and that this provides a better method of responding to the complexities of cases such as Margo’s. This analysis provides the necessary framework for our discussions in the remainder of the book insofar as they relate to capacity.
Outline of the MCA, the inherent jurisdiction of the High Court, and the CRPD
The MCA was intended to establish a comprehensive statutory framework setting out how decisions should be made by and on behalf of adults whose mental capacity to make specific decisions is in doubt. It also clarifies what actions can be taken by others involved in the care or medical treatment of people lacking capacity to consent. The framework provides a hierarchy of processes, extending from informal day-to-day care and treatment, to decision-making requiring formal powers and ultimately to court decisions and judgments. The full range of processes was intended to govern the circumstances in which necessary acts of caring can be carried out, as well as the necessary decisions taken on behalf of those lacking capacity to consent to such acts or to make their own decisions.
Unusually for English legislation, the MCA is expressly based on statutory principles. Section 1 of the Act starts with three ‘screening’ principles concerning capacity: a presumption of capacity, a requirement to provide all practicable assistance before a person is treated as incapable and a declaration that a person must not be treated as incapable ‘merely because he makes an unwise decision’. As regards the basis for acting or deciding on behalf of a person lacking decision-making capacity, the MCA is predicated on two overarching principles: (1) best interests: an action done or a decision made under the act for or on behalf of a person who lacks capacity must be done, or made, in his best interests and (2) the least restrictive option: before the act is done or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.
Section 2 of the MCA sets out the definition of a person who lacks capacity. Section 3 sets out the test for assessing whether a person is unable to make a decision and therefore lacks capacity. By applying these together, MCA 2005 adopts a functional approach to defining capacity, requiring capacity to be assessed in relation to each particular decision at the time the decision needs to be made, and not the person’s ability to make decisions generally. Further, the inability to make the particular decision in question must be because of ‘an impairment of, or a disturbance in the functioning of, the mind or brain.’ Precisely how we are to interpret the words ‘because of’ is addressed in greater detail below.
Section 4, in turn, sets out a checklist of factors that must be considered in deciding what is in a person’s best interests, aimed at identifying those issues most relevant to the individual who lacks capacity (as opposed to the decision-maker or any other persons). Although the test is intended to be an objective one, the courts have made clear that the purpose of the best interests is to require the decision-maker to consider matters from the person’s point of view (Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67). The person’s ascertainable wishes and feelings therefore carry great weight, even if they are not determinative (Briggs v Briggs & Ors [2016] EWCOP 53).
Standing alongside the MCA is the inherent jurisdiction of the High Court to protect ‘vulnerable adults’: those who have mental capacity applying the MCA test, but who are or are reasonably believed to be, either (1) under constraint or (2) subject to coercion or undue influence or (3) for some other reason deprived of the capacity to make the relevant decision, or disabled from making a free choice, or incapacitated or disabled from giving or expressing a real and genuine consent (A Local Authority v (1) MA (2) NA and (3) SA [2005] EWHC 2942; endorsed in DL v A Local Authority and Others [2012] EWCA Civ 253). The precise extent of the High Court’s jurisdiction – described in DL v A Local Authority and Others as ‘the great safety net’ – is unclear. In particular, it is ambiguous as to whether it is limited to taking steps directed against those who are coercing or placing the individual under duress, or whether the High Court can take steps directed against the vulnerable adult herself (i.e., to remove her from the place where she is subject to coercion).
As discussed in Chapter 6, we take the view that, while there is undoubtedly an important place for the use of the inherent jurisdiction to create a ‘safe space’ around the individual, its use against the person herself is difficult to reconcile with the distinction currently drawn in the law between those with capacity and those without capacity. There are other ways in which to draw the line, but for better or worse, the law at present in England and Wales does draw this distinction. One of the key purposes of this book is to outline how we can better respond within the framework of the MCA to those situations in which a person is suffering harm as a result of a combination of a cognitive impairment and the actions of those around them. We address this in the second section of this chapter after we have sketched an outline of how the CRPD challenges both law and practice in this area.
The CRPD was concluded in 2006. It seeks to bring about a radical change in the approach adopted in the social, political and legal arenas to those with disabilities (and, indeed, to the very concept of disability). Among other provisions, it seeks to bring about a fundamental shift away from the taking of decisions on behalf of individuals on the basis of an asserted lack of mental capacity. The CRPD has been very widely ratified, including by the UK. The CRPD has not been incorporated into domestic law, so it does not directly bind practitioners in the same way as does the European Convention on Human Rights (ECHR). However, it imposes obligations on the UK as a state, and is now routinely referred to by both the European Court of Human Rights and the English courts to help interpret the ‘living instrument’ of the ECHR as it applies to person with disabilities. At least as interpreted by the Committee on the Rights of Persons with Disabilities, compliance with Article 12 of the CRPD (which provides for equal recognition before the law) means that states party to the CRPD should replace legislation providing for substitute decision-making for incapacitated adults based ‘on what is believed to be in the objective “best interests” of the person concerned, as opposed to being based on the person’s own will and preferences’. The Committee also denies the validity of the concept of mental capacity, contending that it is contingent on social and political contexts ‘as are the disciplines, professions and practices which play a dominant role in assessing mental capacity.’ In 2017, the Committee examined the compliance of the UK with the CRPD, and recommended that the UK ‘abolish[ed] all forms of substituted decision-making concerning all sph...
