Kevin De Sabbata, University of Leeds
Advance Directives, Dementia and the UN Convention on the Rights of Persons with Disabilities: A new role for anticipated will
Advance directives are legal documents in which a person specifies his or her choices on medical treatment for the time in which he or she will be lacking legal capacity. This legal instrument normally enters into force once an individual, because of a mental disability or other problems of communication, is considered incapable to make valid care decisions by law.
However, the UN Convention on the Rights of Persons with Disabilities (UNCRPD) advocates for the elimination of the traditional binary distinction between legal capacity and incapacity. Indeed, Article 12 UNCRPD affirms that disabled individuals shall enjoy legal capacity on an equal basis with others and that appropriate measures need to be put in place in order to provide them with the support they may require in exercising their right to make decisions. As stressed by the Committee on the Rights of Persons with Disabilities, under such provisions physical or mental impairments are not a valid justification for depriving a person of his or her legal capacity and supported decision-making should be used to promote the person’s decisional power even in case of severe mental illnesses.
The new approach emerging from the Convention is particularly promising in relation to conditions such as dementia, which provokes a progressive deterioration of memory and reasoning ability. In fact, in this context, the loss of capacity occurs gradually, rather than all of a sudden, making it challenging to apply the traditional binary concept of legal capacity/incapacity. Moreover, also with regard to treatment decisions, Article 12 UNCRPD puts at the centre the will of disabled people, empowering them to exercise more fully their autonomy. However, it is not clear which role advance directives have in this new system. In fact, on the one hand, the UNCRPD Committee considers this legal tool as a means to support the person and to reconstruct his or her will when it is not possible to directly communicate with him/her. On the other hand, it does not specify the status of advance directives in relation to other decision aids and does not provide guidance on how we should determine the exact moment in which such legal documents should enter into force.
This paper analyses the role advance directives play within the support-centred model proposed by Article 12 UNCRPD, focusing on the specific case of treatment decisions of people with dementia. It maintains that, under the UNCRPD, advance directives should not be considered as an isolated document with autonomous binding force, being rather one of the many tools for reconstructing the will of the person. In this regard, it studies the challenges posed by this new approach to advance care planning with a particular focus on the need of guaranteeing the correct reconstruction of the person’s wishes and of preventing abuses. In doing this it refers to concrete examples emerging from dementia care practice in various European countries.