Policy and practice issues in making an advance care directive with decision making support: A case study

Supported decision making is potentially transformative for people with intellectual disabilities

The Medical Treatment Planning and Decisions Act 2016 (Vic) is a step toward law reform to implement supported decision making and the rights of people with disabilities enshrined in the United Nations Convention on the Rights of Persons with Disabilities. The Act includes provisions to enable a person, who might otherwise be assessed as being without decision making capacity, to make an advance care directive with support. This case study explores the implementation of the Act through the experiences of a person with intellectual disability, their medical practitioner and supporter in making an advance care directive. The findings identify shortcomings of the Act that effectively exclude people with severe intellectual disabilities from supported decision making. They illustrate the need for greater institutional support for supported decision making and educational strategies for medical practitioners if the potential of the Act is to be realised for people with intellectual disabilities. Finally, the findings indicate the relevance of the La Trobe Support for Decision Making Practice Framework as a guide to decision support in this context.