Withholding treatment and intellectual disability: Second survey on end-of-life decisions in Switzerland

BACKGROUND: As people live longer, they are more likely to die over a prolonged period from incurable, chronic illnesses that occur more frequently in old age. Therefore, people will experience an increase in end-of-life discussions and decisions. AIM: The aim of this study was to explore the prevalence and nature of end-of-life decisions for people with disabilities in Swiss residential homes. DESIGN: A cross-sectional survey in the three biggest German-speaking regions in Switzerland (N = 209) was conducted. SETTING: All of the residential homes for adults with disabilities (N = 209) were invited to participate in a cross-sectional survey. The response quote was 76.7%. Directors provided information on 82 deaths. Chi-square and t-tests were used to study differences in prevalence and nature of end-of-life decisions between people with intellectual disability (ID) and people with other disabilities. RESULTS: An end-of-life decision was taken in 53.7% of the cases (n = 44). For people with ID, the decision to withhold treatment had been taken more often (28.9%, 13 cases) than for people with other disabilities (8.1%, 3 cases) (χ(2) (1, N = 82) = 5.58, p = 0.017). CONCLUSION: The study provides insight in end-of-life decision-making for people with disabilities in Switzerland. The results have implications on surrogate decision-making for people with ID living in residential homes. As the study partly confirms the results of previous studies, further studies will be necessary.