End‐of‐life decisions: an important theme in the care for people with intellectual disabilities

Background While end‐of‐life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end‐of‐life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method A retrospective study of medical files of people who died between January 2002 and July 2007. Results One or more end‐of‐life decisions were taken in 27 out of 47 cases. A non‐treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases. No information was found about the process of end‐of‐life decision making. There was no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end‐of‐life decision. Conclusion This study demonstrates that medical end‐of‐life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision‐making processes.