Gillian Loomes, University of York
Cripping the Crystal Ball: Exploring the Synergies and Tensions when Advance Care Planning and Disability Politics Meet
The case of Re T. confirmed in Anglo-Welsh law the right of adults with the mental capacity to make decisions regarding a medical treatment to choose whether to consent to the treatment, to refuse it, or to choose one or another of the treatments offered. This right was extended by the Mental Capacity Act 2005 (the ‘MCA 2005’), which introduced a statutory framework for people in England and Wales to make decisions concerning medical treatment in advance of a time when they lose the mental capacity to do this for themselves. Specifically, ss.24-26 MCA 2005 provide scope for the making of legally binding Advance Decisions to Refuse Treatment (ADRTs), and ss. 9-14 MCA 2005 set out the procedure whereby an individual can create a Lasting Power of Attorney (LPA) to enable another person, or people, to make decisions on their behalf in the event they lose the mental capacity to do this for themselves, with health and welfare decisions forming part of this framework.
The implementation of the rights enshrined within the MCA 2005, described as conveying precedent autonomy, have been the focus of academic research, and of socio-political discourse and policy making: Including consideration of ways to make ADRTs more effective in practice (Kitzinger, 2014), ways to increase understanding and uptake of ADRTs (Kitzinger and Kitzinger, 2016), and advance care planning in relation to specific circumstances, e.g. ageing (Bond and Lowton, 2011), and primary care (Murray et al. 2006). Additionally, charities have sought to promote access to advance care planning through specific tools to assist with this process (e.g. Compassion in Dying, n.d.).
What has thus far received scant consideration, however, is the potential inflection of such discourses in relation to disability politics – e.g. concerning disabled people and the right to life (Clements and Read, 2008) and temporal/adjustment considerations around “the need to accept limitations and find ways of living with them” associated with acquired impairment (Shakespeare, 2006: 117). This paper draws on 15 semi-structured interviews with disabled activists, including those involved in the organization of disabled people’s organizations, scholar-activists, and disability advocates, recruited by
snowball sampling. Each interview lasted on average 60 minutes, and was recorded and transcribed by the researcher. In presenting a thematic analysis of participants’ views concerning the legal framework of advance care planning – both conceptually, and regarding the tools designed to facilitate access to this legal right, the paper highlights the range of often deeply-held views voiced by disabled activists on this issue (from fear that normalization of ADRTs would devalue the lives of disabled people, to concern that the right of advance care planning is currently inaccessible to some with disabilities). It thus seeks to provide insights for those involved in supporting disabled people to assert their legal rights in advance care planning, and to make recommendations for future policy and strategy regarding disabled people, their organizations, and across wider health and social care domains.