Abstract
The research about understanding the end of life and decision-making by people with intellectual disability is in its infancy. There are many unknowns, limited by the available empirical research. In this chapter we report the evidence combined with best clinical practice. The chapter focuses on end of life in older age where the person has time to make choices. We do not address the tragedy of sudden and unexpected death, wherein there has been no or little time to make decisions. Emphasis is given to how families, carers and professionals (We use the term “caregivers” throughout the chapter as the collective term to include families, carers and professionals, unless otherwise specified.) can ensure that the person with intellectual disability is central in end-of-life decision-making and can meaningfully participate in end-of-life care planning.
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Wiese, M.Y., Tuffrey-Wijne, I. (2020). End-of-Life Choices. In: Stancliffe, R.J., Wehmeyer, M.L., Shogren, K.A., Abery, B.H. (eds) Choice, Preference, and Disability. Positive Psychology and Disability Series. Springer, Cham. https://doi.org/10.1007/978-3-030-35683-5_17
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