End of life and people with intellectual disability

Placing the Preferences of People with Profound Intellectual and Multiple Disabilities At the Center of End-of-Life Decision Making Through Storytelling

“…This is despite the life expectancy of people with intellectual disability increasing similarly to the general population (Coppus, 2013). Where the needs of people with intellectual disability have been considered, the focus is on those with mild intellectual disability, leaving people with PIMD at most risk of not being involved in end-of-life decisions (Bekkema, de Veer, Wagemans, Hertogh, & Francke, 2014; Kirkendall, Linton, & Farris, 2017; Stancliffe, Wiese, & Read, 2017; Voss et al, 2019). Bekkema et al (2014) reported that while people with severe intellectual disability had their end-of-life preferences taken into account only 2.9% of the time, people with mild or moderate intellectual disability had their preferences taken into account 27.8% of the time.…”

“…While there is an increasing focus on understanding and supporting end-of-life preferences for people with milder intellectual disability, the experiences of people with severe intellectual disability continue to be poorly represented in current empirical data (Stancliffe et al, 2017). It is hoped that this article has sparked inspiration for the development of a research agenda focused on maximizing autonomy for people with PIMD at the end of life.…”

Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services

“…There exist concerns that the suboptimal quality of health care provided to this population (Heslop et al, 2013) may extend to end‐of‐life care provision (Tuffrey‐Wijne et al, 2015). However, the evidence base concerning the scale of need for such care, and the extent to which such need is recognized and met effectively, is limited by a lack of population‐based research (Moro, Savage, & Gehlert, 2017; Stancliffe, Wiese, & Read, 2017; Tuffrey‐Wijne et al, 2016). For the most part, the major research contribution in this field has come from qualitative research which has provided many valuable insights concerning the delivery of care at the individual level.…”

Place of death of people with intellectual disabilities: An exploratory study of death and dying within community disability service settings

“…Finally, the unique mortality profile of people with IDs makes comparison with place of death for the wider population problematic given that cause of death is also an important determinant of care outcomes at the end of life (Wachteman et al, 2016). More robust population-based end of life research is needed to make valid comparisons with the general population, a need that so far had not been addressed (Moro et al, 2017;Stancliffe et al, 2017;Tuffrey-Wijne et al, 2016). The article's main values are its implications for such research, and these are highlighted below.…”

“…There is considerable evidence about their understanding of death (see e.g. Stancliffe et al, 2017) but 'dying' is perhaps more variable, nuanced and complex in meaning, experience and practice than 'death' (Timmermans, 2010).…”