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

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 (Brinkman-Stoppelenburg, Rietjens, & van der Heide, 2014). Such planning might include will making, advance care planning, enduring guardianship, organ donation, and for some, decisions about the where and how of end-of-life care. People with intellectual disability, however, are often not afforded similar opportunities to learn about or plan for dying (Forrester-Jones, 2013; Wiese, Dew, Stancliffe, Howarth, & Balandin, 2013). The aim of this paper is to outline current thinking around the need for people with intellectual disability to learn about and understand dying and death.