Dr Michelle King1,2
1Queensland Aphasia Research Centre, University of Queensland, Herston, Australia, 2Surgical Treatment and Rehabilitation Service (STARS) Education and Research Alliance, The University of Queensland and Metro North Health, Herston, Australia
Biography:
Michelle is a sociologist, lawyer, and consumer advocate. Her research work focuses on decision-making, and how law works in practice for people with disabilities and other impairments to legal capacity. She explores decision-making in practice in a range of areas, including the NDIS, health and aged care, banking and finance, income support, and voting. She is a Research Fellow at the Queensland Aphasia Research Centre (University of Queensland and STARS).
Abstract:
Background:
Precedent Autonomy (such as advance healthcare directives and powers of attorney) is a common form of planning for future decision-making by people with dementia. However, rights-based regulation of aged care, and support for autonomy, dignity, and decision-making are core parts of the Charter of Aged Care Rights and the Quality Standards for aged care services in Australia. This may create conflict between a person’s previous wishes and their right to be supported to make a new decision. Should we respect the decisions a person made earlier (precedent autonomy), or should we support them to decide now (supported decision-making)?
Aim/Method:
This paper discusses the legal complexities of precedent autonomy in the context of supported decision-making and human rights for people with dementia. The issues are grounded by examples from thematic analysis of in-depth interviews about aged care and decision-making with 14 people living with dementia, 26 family members of people with dementia, and 27 people working in the aged care sector in Australia.
Findings:
Most participants made decisions for a person by basing them on “what the person [would have] wanted” or by using formal precedent autonomy documents. Very few people discussed supported decision-making, or support for a person to make decisions that may conflict either with their previous preferences, or their current “best interests”.
Implications:
These complex issues urgently need further attention to clarify the role of precedent autonomy and formal substitute decision-makers in the human rights context of supported decision-making emerging in aged care in Australia.
Presentation Slides PDF – Click here