Learning about dying, death, and end-of-life planning: Current issues informing future actions

Weise, M. Learning about dying, death, and end-of-life planning. Journal of Intellectual & Developmental Disability Online ā€“ 23 January 2015


Knowing about dying and death is a typical part of lifelong learning, gained through personal experience with the death of loved ones, popular culture, and formal education. Sudden and unexpected death aside, adults in the general community can use this knowledge to plan for the manner of their dying. Such planning might include will making, advance care planning, enduring guardianship, organ donation and, for some, decisions about the where and the how of end-oflife care.

People with intellectual disability, however, are not afforded similar opportunities to learn or plan for dying. The aim of this paper is to outline current thinking around the need for people with intellectual disability to learn about and understanding dying and death.

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