Decision-making, legal capacity, and the hard cases: considering the ‘(best interpretation of) will and preferences’
Michelle King1, Queensland Aphasia Research Centre, University Of Queensland Brisbane 1Queensland Aphasia Research Centre, University Of Queensland, Brisbane, QLD, Australia
Abstract
Background:
When a person cannot be supported to make a decision themselves, decision-makers should use a ‘(best interpretation of) will and preferences’ approach. This paper explores the ‘will and preferences’ principle in two different groups of people who have fundamental challenges to legally recognised decision-making: people with severe dementia, and people with profound intellectual disabilities.
Method:
The discussion is grounded by analysis of in-depth interviews from two research projects: 18 interviews about decision-making for young adults with profound intellectual disabilities; and 21 interviews about aged care, significant conversations, and decision-making with 4 people living with dementia and 17 family members of people living with dementia.
Results:
People with profound intellectual disabilities have never had relevant ‘will and preferences’ to inform decision-making. For people with severe dementia, the issue of which ‘self’ informs ‘will and preferences’ can also raise difficult questions for decision-makers. In both cases, interpreting ‘will and preferences’ can be functionally difficult to distinguish from a ‘best interests’ approach.
Implications:
‘(Best interpretation of) will and preferences’ needs further development to fully account for people with complex and profound issues with their legal capacity.
Biography
Michelle is a sociologist and lawyer: her research focuses on decision-making and the operation of law and regulation in practice for people with disabilities and other impairments to communication and legal capacity.