Medical end-of-life decisions for people with intellectual disabilities in Switzerland: Third survey

Background There is a generally high incidence of medical end-of-life decisions in Switzerland. International research has described a number of potential problems that complicate end-of-life decisions for people with intellectual disabilities (IDs). Specific Aims The aim of this study was to explore the prevalence and nature of end-of-life decisions for people with IDs in Swiss residential homes and to assess, whether, and with whom the end-of-life decision was discussed and whether the person had decision-making capacity or not. Method A cross-sectional survey in residential homes for adults with disabilities was conducted in six cantons in Switzerland. Responses were provided by 64.4% of the residential homes. The survey delivered detailed information on 161 persons (101 men, 60 women) who had died between 2015 and 2017 in 77 residential homes for people with disabilities. Findings In 86% of all nonsudden deaths, at least one end-of-life decision was reported. There were no differences in the frequency of medical end-of-life decisions for people with IDs and for people with other disabilities. In 63.6% of the cases, the decisions were discussed with the person with a disability. Not all persons with a disability were considered to have decision-making capacity. For people with disability, health and care staff are important persons to initiate such discussions. Discussion Changes made in 2013 in Swiss law on adult protection as well as training courses on palliative care and end-of-life decisions in residential homes have had an impact on medical end-of-life decision-making for people with IDs. Still, further efforts to motivate physicians to include patients with IDs in end-of-life decision-making will be useful.