This presentation will focus on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for people with PIMD. A secondary challenge is society's widely held prejudices regarding people with PIMD’s right to 'legal personhood' and therefore to be supported to lead self-directed lives, including at the end of life. In response to these challenges, this presentation will draw on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD.


Joanne Watson
Deakin University

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