A Critical Analysis of Patients’ ‘Will and Preferences’ Under the Convention on the Rights of Persons with Disabilities

The doctoral thesis addresses the importance and implications of understanding the nature of personal autonomy for the right to legal capacity and support in exercising legal capacity under Article 12 of the CRPD. Article 12 challenges the long-established connection between legal capacity and mental capacity, and the concept of autonomy is no longer perceived as being linked to the capacity to reason and rationalize. This approach takes a step away from previous approaches of attributing legal capacity to cognitive capabilities. Instead, it links legal capacity to having a ‘will and preference’ rather than being capable of cognitive decision-making. There is, however, a fundamental challenge in the premise behind many interpretations of Article 12 that all of us have the ability to express our genuine will and preferences at any time. In other words, expressed will and preference are largely considered synonymous with genuine will and preference. Focusing specifically on the context of decisions related to the refusal of life-saving treatment, the thesis argues that, in order to determine whether a patient’s decision reflects their genuine will, it is necessary to assess whether their decision stems from their true self and identity, as understood in narrative terms. The implications of such an approach are analyzed in relation to the support requirement in the exercise of legal capacity. The significance of the arguments lies in ensuring that both patients with and without disabilities can make treatment decisions that, as much as possible, genuinely reflect who they are, thereby ensuring that autonomy is considered an inclusive achievement for all humans.