Realising supported decision-making in the context of dementia and treatment decisions: international principles and initiatives from Europe

The thesis analyses how to create better conditions for people living with dementia to exercise their right to choose on medical treatment. It starts from the numerous barriers faced by these individuals in deciding on healthcare matters and seeks to study how a legal, policy and practice approach to healthcare decision-making, characterised by a stronger focus on support and on accommodating contextual dynamics would better enable the person to decide for themselves.
In addressing such a question, this work adopts the perspective of the social model of disability and of Fineman’s vulnerability theory. The social model looks at disability and chronic conditions as social, rather than just clinical problems, conceptualising them in terms of interaction between an impairment and societal barriers. In this regard, it focuses on removing the societal obstacles preventing the person from living their life to the fullest. Fineman’s vulnerability theory supports and extends such claims in relation to legal personality and the role of the state. Starting from a vision of vulnerability as a universal characteristic, it argues that it makes no sense to distinguish between autonomous/nonautonomous or capable/incapable individuals and advocates for state and social institutions to take action in providing the services necessary for people to be more resilient to internal and external jeopardies. Starting from this perspective this work argues that the numerous obstacles faced by individuals living with dementia in choosing on medical treatment can be overcome or greatly attenuated if we adopt a model of healthcare decision-making which makes use of social institution’s potential for building resilience and removing disabling barriers.
Such a model appears embodied by Article 12 UN Convention on the Rights of Persons with Disabilities. Indeed, this Article affirms that all disabled individuals must be recognised the right to legal capacity and decision-making, refusing the traditional distinction between capacity and incapacity and requiring State Parties to actively support disabled individuals in exercising their right to choose. The thesis analyses the implications of such provisions with regard to treatment decisions of people living with dementia, by studying how European regional organisations such as the Council of Europe and the European Union, can contribute to the practical realisation of such principles, and how promising initiatives developed in single European countries can provide an idea on how they can translate into concrete behaviours and practices.