Dr Margo Sheahan1, Professor Christine Bigby1, Professor Jacinta Douglas1
1La Trobe University, Bundoora, Australia
Although there is extensive research of advance care planning research to support end of life decision making, little research has included people living with intellectual disability. In 2019, legislation was implemented in Victoria, Australia, which allowed people with cognitive disability to complete legally binding advance care directives with decision making support. This study describes how a patient living with cognitive disability in Victoria, made legally binding directives with her general practitioner and appointed Support Person.
This case study was conducted in a general practice setting in Melbourne, Victoria. Three participants were interviewed: a patient with cognitive disability, her appointed Support Person, and the patient’s general practitioner. Semi structured interviews provided data about participant experiences of decision-making support. Key document analysis provided data on the context.
The patient completed both Values and Instructional Directives with decision making support. Each Directive involved different people, processes, and institutional influences. The Support Person’s deep knowledge of the patient enabled completion of the Values Directive. However, media influence limited the options that were considered. Completion of the Instructional Directive was enabled by the general practitioner’s medical knowledge, understanding of the health system and end of life care and treatment, knowledge of the patient, and ability to work with the Support Person. However, supported decision-making was constrained by institutionalised understandings from the law and medicine.
This study shows that the La Trobe support for decision making framework is a useful guide for supported decision making in this context. However, institutional barriers need to be addressed.
Margo has a background in consumer participation in health care. In 2017, she was a member of the Implementation Working Group for the Medical Treatment Planning and Decisions Act 2016. She is Research Fellow at La Trobe University undertaking research to support the equal rights of Victorians with cognitive disability.