Dr. Caroline Dalton:

I thank the Cathaoirleach and the members and staff of the committee for the invitation to present on the topic of protecting autonomy and assessing decision-making capacity. I do so in the context of my experience as a registered intellectual disability nurse and a lecturer in the school of nursing and midwifery. My PhD focused on end-of-life care supports and decision-making practices in intellectual disability services.

In an Irish context, the ratification of the UN Convention on the Rights of Persons with Disabilities and the enactment of the Assisted Decision-Making (Capacity) Act 2015, has led to a focus on autonomy and decision-making capacity from a societal, governmental, social and legislative perspective. While acknowledging these important legislative changes, difficulties will continue to be encountered in protecting autonomy in a real-world context, specifically where issues with regard to capacity arise. It is this real-world context I wish to focus on today. It is important there is a focus on autonomy, given the interconnectedness of autonomy decision-making and the processes and steps involved in coming to a decision and the circumstances in which that decision is being made.

Many people across all sectors of society will encounter difficulties when making decisions, and the Assisted Decision-Making (Capacity) Act 2015 affirms a functional approach to capacity. This recognises that the capacity of individuals to make a decision may vary depending on the decision to be made and the context in which that decision is made, as in that capacity may fluctuate. However, irrespective of whether a person is deemed to have decision-making capacity, great care and attention must be placed on how capacity is assessed. Safeguards must be in place to ensure an individual’s right to autonomy is protected to ensure people are not excluded from a range of decision-making opportunities relating to their end-of-life care, including where, when and how they would like to die. Conversely, safeguards must also be available to support those who may be vulnerable to pressure or at risk of having their autonomy undermined due to coercive control. While it is important to be mindful of the negative impact of coercive or controlling relationships, it is also important to recognise that positive, respectful relationships can not just protect autonomy but also foster and promote the autonomy and capacity of an individual.

I would therefore argue that discussions relating to autonomy should not just be linked to assessing decision-making capacity. This is too narrow a focus, given the importance of decision-making capacity within the context of all aspects of end-of-life care, which may extend to assisted dying. The scope of the discussion needs to broaden to view capacity as a constructed state. Capacity is not simply a characteristic to be assessed but one that needs to be encouraged, promoted, fostered and supported. Supports must therefore be provided to enhance a person’s capacity and address issues which might impede a person’s capacity. These issues cannot be viewed solely within the context of the individual themselves and how they are making that decision but also in the context of the environment in which they live, their support circles and networks, and their access to services.

A continuum of constructive supports reflective of the individual's ability is required. Appropriate policies, protocols and guidelines will need to be developed to support a functional approach to decision-making and ensure it is implemented in a real-world context, not just for the person making these decisions but also for those supporting them in that decision-making process. These supports need to be effective in ensuring a decision is voluntary, that the person is being made aware of all options available to them, that the information is being provided in a format the person can understand, be that augmentative and alternative forms of communication, or any other reasonable accommodations that might be required. The context in which the decision is being made is also of great importance. Has this individual access to a range of supports from which they can choose, such as access to good quality end-of-life care? In essence, the point I am making to the committee is that people need time and access to appropriate resources to ensure their autonomy is protected. Without these, individuals may potentially be excluded from making decisions relating to all aspects of their end-of-life care, including how, where and when they die. I hope the committee will give due consideration to this point in its deliberations. I thank the committee for its attention.