Who controls your future: The convention on the rights of persons with disabilities from a service user focused perspective

Abstract

Although notions of personal autonomy are increasingly enshrined as the primary principle of ethical medical practice, psychiatry appears to have real difficulty in applying this. Notions such as compulsory treatment and mental health legislation serve to reinforce paternalism. This may not be in the interests of either the patient or the doctor. The Convention on the Rights of Persons with Disabilities (CRPD), although providing no new rights to mental health patients, has led to guidance as to what existing rights entail and how they should be applied. While service users were involved in the drafting of the Convention on the Rights of Persons with Disabilities, what is lacking is service user focused perspectives in the critique and debate that has ensued in response to the Convention on the Rights of Persons with Disabilities committee’s informed guidance as to the correct interpretation of the rights. Furthermore, consideration of how to translate the rights into practice is also lacking. This co-produced viewpoint aims to contribute to this debate and provides a brief overview of a novel educational approach to translating the Convention on the Rights of Persons with Disabilities committee’s guidance into clinical practice.

Since the ratification of CRPD, nation-states have grappled with making it real. Much of the academic literature takes a negative perspective of the CRPD, particularly the interpretation of the need for supported decision-making as opposed to substitute decision-making. Although the debate covers considerable ground, the perspective of service users and the education of those who will (or will not) apply the CRPD in practice rarely feature. Thoughtful pieces do contribute (Roper, 2018) but these tend not to be either views on those who criticize the CRPD or related to education.

The ‘anti-CRPD’ stance

Understanding a service user perspective requires an outline of the stance articulated by many who condemn the CRPD.

First, the process of the development of this international convention and its subsequent interpretation by the committee has been criticized as having been ‘captured’ by radical elements of the patient’s rights movement and in need of ‘saving from itself’ (Appelbaum, 2019). This process criticism is reflected in other academic literature (Dawson, 2015; Freeman et al., 2015). Rather, we note the drafting actually consisted of ‘a five-year effort, involving scores of nongovernmental organizations and hundreds of individuals’ in addition to States, relevant bodies and organizations of the United Nations (UN) system, including relevant human rights treaty bodies and the regional commissions. However, the voice that persons with disabilities had in the process was significant, particularly given that an acknowledged flaw of prior UN conventions was the lack of the voice of those impacted. Minimizing the importance of this involvement and describing it as ‘radicalizing’ is pejorative at best and offensive to persons with experience of disability at worst. Furthermore, it is most notable in terms of such involvement, that the CRPD offers no new right to persons with disability; rather it makes those rights absolutely clear.

Second, ratification of the CRPD by nation-states has been considered ‘thoughtless’ (Appelbaum, 2019). Despite this, there have been a raft of changes to mental health legislation in an effort to bring this legislation into line with CRPD expectations (Callaghan and Ryan, 2016; Harper et al., 2017). Those expectations are that patients experiencing mental distress have the right to make their own medical decisions and be supported to do so (supported decision-making), and to not have this right substituted by a third party (substitute decision-making), even in situations where there exists an apparent lack of mental capacity. These changes endeavor to increasingly protect patient rights and respect personal autonomy. However, none of the legislative reforms absolutely commit to a supported decision-making regime as envisaged by the CRPD in that assessments of a lack of capacity still result in substitute decision-making. The perspective of the CRPD committee is that

Mental capacity is not, as is commonly presented, an objective, scientific and naturally occurring phenomenon. Mental capacity is contingent on social and political contexts, as are the disciplines, professions and practices which play a dominant role in assessing mental capacity. (UN, 2014)

From a service user perspective, there is a significant power imbalance and threat where the assessment of such apparent capacity is at the sole discretion of doctors who are often influenced by the social and political pressures. In the face of risk, for example, of suicide, the failure to agree with an assessing doctor’s recommended plan (such as being admitted to hospital) can be seen as a lack of capacity, leading to a decision being made directly against the patients stated wills and preferences. In this sort of case, capacity assessment can degenerate into a risk based, non-supported approach to care (Newton-Howes, 2019) and supplementing legislation, as opposed to rewriting it, has been questioned as a reasonable approach (Stavert, 2018).

Third, there is a logical error in arguing for not changing current jurisdictional practice because the CRPD committee’s position is extreme in its radical approach. Highlighting flaws in this position does not by default support another position, that presumably being ‘business as normal’.

Fourth, there are ethical problems with interventions that are involuntary, but presumed to be supported by patients (Newton-Howes, 2019; Newton-Howes and Mullen, 2011). This violates the principles of autonomy and non-maleficence. By their very nature, involuntary treatments are those patients do not volunteer to engage in. If they did, they would be voluntary. It is bizarre that involuntary services are used as an argument to lever some, as opposed to no little or no, health care support. We maintain our position that this is ‘Kafkaesque’ at best (Newton-Howes and Ryan, 2017) and ‘Orwellian’ at worst. Such a position would not be tolerated in the treatment of physical health. The default position of being different or needing protection is stigmatizing. Comparisons with physical health and mental health have been constructed (Ryan, 2011) and are in equal parts amusing and embarrassing as to the way discrimination can occur without awareness.

Finally we note the assumption that the current ‘commonsense’ position, challenged by the CRPD, is the only ‘sense’. In regard to the latter, ‘commonsense’ is colloquial shorthand for ‘current normative’ practice (Laudan, 1990), but this is not any argument for this as best practice. The existence of the CRPD, and stream of articles and considerations by those engaged in frontline mental health work (both patients and doctors) who oppose this normative approach is evidence of this. Bear in mind the CPRD offers no new rights to those with disability, rather it highlights the compromises to existing patient rights in our current ‘normative practice’. We would suggest the position advocated by the Convention is evolution, moving nation-states toward positions of autonomy already enshrined in prior conventions for all citizens.

In pursuit of supported decision-making

The committee of the CRPD has been clear that persons with disabilities should have access to the support necessary to make decisions in accord with their will and preferences even where a person is considered to have impaired decision-making capacity (supported decision-making). Although many ‘jobbing’ psychiatrists struggle with this notion, two important elements need to be considered. First, we do not know how a supported decision-making framework, as juxtaposed to a substituted decision-making framework, would operate, as this has not been tried. Certainly the expectation of changes to legal frameworks around mental health care have traditionally not played out as expected (Callaghan and Newton-Howes, 2017) and therefore there is little reason to expect the potential problems of this approach would harm patients or the health care system. Second, the abolishment of substitute decision-making does not imply the abandonment of support. Substitute decision-making may essentially involve compulsory detention and/or compulsory treatment while support intrinsically requires the person’s deep involvement for only they can determine what constitutes support.

We support the concept detailed by Szmukler in his recent examination of ‘wills and preferences’, although note the continued primary focus on substitute decision-making (Szmukler, 2019). He describes the central place of the patient focus to guide the choices made. In this vein, we also see a place for the concept of a Ulysses clause (Srebnik and Russo, 2007) or an alternative advanced directive (De Jong et al., 2016). In real-world terms, we think such an approach would provide a translation of a person’s ‘will and preferences’, enabling a deep understanding of personal choice and temporal consistency. We accept advanced directives have problems, although this will always be the case in the realm of decision-making that may not be seen as socially normative, particularly in a group seen as experiencing phenomena outside of the norms of experience. It remains challenging to endorse a decision that is idiosyncratic and runs counter to the common experiential expectation. Nonetheless that is the very essence of supported decision-making, recognizing the asymmetrical nature of it. Supporting a decision that you would pick yourself is easy; supporting a non-normative view that reflects a personal preference is much more difficult. This is doubly true if the patient’s non-normative decision appears to potentially place them in jeopardy, at least from the doctor’s perspective.

The importance of education: The training of the next generation of medical personnel

International societal change is a slow process that requires consistent pressure from those groups demanding constant, deliberate action to that end. The cases of racism and gender inequality are examples of this. In the case of equality for those who experience mental distress, this process of change is in its early stages, albeit with four decades of progress to date and 13 years since the initial ratification of the CRPD. A key element of this change is the learning and appreciation of those in positions of power. In the case of mental health equality, the people in positions of power in day-to-day clinical interaction are doctors. To our mind, it is therefore essential that a line of effort is focused on the learning of medical students and psychiatric trainees, the specialists of the future. To that end, we have developed teaching packages for each within our medical training. At undergraduate level, the package enables medical students to recognize inequality, stigma and discrimination, and what respect for human rights entails. At postgraduate level, the education package is specifically focused on reducing substitute decision-making and promoting supported decision-making; or in other words, supporting trainees to identify and apply ‘positive alternatives, rather than to trot out the approaches of the past that have proven insufficient’ (Bartlett, 2019). What we have observed is that the barriers to reducing substitute decision-making and promoting supported decision-making are not sociodemographic and clinical but more the culture and systems of the services: the ‘old, controlling paradigm’ (Bartlett, 2019). As trainees spend more time within this culture, their receptiveness to positive alternatives appears to diminish. Hence our drive to engage in education early in medical school as well as within the psychiatric trainee program.

Concluding remarks

This viewpoint has been co-produced by a consultant psychiatrist, who engages in clinical work as part of his day job, and a service user academic, with lived experience of mental distress and experience of treatment others deemed best. We are also engaged in teaching and active research in the area (Gordon et al., 2014). We encourage critique and criticism of our perspectives for through ongoing debate, dynamic decisions can be reached. These are themes that affect many of us and are not part of a specialist side-stream in medicine. Human interaction is the fundamental basis upon which psychiatry is built. The unwritten expectation of respect for personhood and a mutual desire to do what is best for each person, from that person’s perspective, should be the basic tenet of clinical engagement. In our view, the application of supported decision-making and empowering autonomy is an important step in that direction, a necessary evolution and one that, we hope, the profession is ready to embrace.