Abstract
Advance care planning (ACP) involves making decisions about care preferences when a person becomes unable to communicate for themselves. In ideal scenarios, ACP is an ongoing, collaborative process but it remains largely underutilised. This chapter reviews critical issues related to ACP for people with intellectual and developmental disabilities, including standards for assessing capacity in healthcare decision-making. Recommendations for facilitating and improving ACP with people who have intellectual and developmental disabilities are described. The analysis is situated within a broader socio-political context to facilitate understanding of the long-standing history of marginalisation that has led many in the disability community to be sceptical of advance directives for fear of rationing care that could potentially lead to the premature termination of life-supportive care and hasten death.
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McGinley, J., Waldrop, D. (2022). Advance Care Planning with and for People Who Have Intellectual and Developmental Disabilities. In: Stancliffe, R.J., Wiese, M.Y., McCallion, P., McCarron, M. (eds) End of Life and People with Intellectual and Developmental Disability. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-98697-1_4
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