End-of-life decisions for people with intellectual disability – a Swiss survey

Objectives: 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 and determine their involvement making these decisions.Methods: All of the residential homes for adults with disabilities in Switzerland (N = 437) were invited to participate in a cross-sectional survey. The survey response quote was 58.2%. Residential home directors provided information on 233 deaths. The chi-square test was used to study differences in the prevalence and nature of end-of-life decisions between people with intellectual disability (ID) and people with other disabilities. The Mann–Whitney test was used to analyze differences in their involvement in end-of-life decisions. Binary logistic regression analyses were used to analyze factors determining the prevalence of withholding life-prolonging treatment from these residents.Results: A high prevalence of end-of-life decisions was found (70.4%). For people with ID, the decision to abandon life-prolonging treatment was more often taken (46.2%, 72 of 156 residents) than for people with other disabilities (24.7%, 19 of 77 residents) (χ2(1, N = 233) = 9.992, P ≤ 0.01). The following variables were positively associated with the decision to withhold life-prolonging treatment: presence of advanced directives (odds ratio [OR] 2.998; 95% CI 1.629, 5.518), degree of disability (OR 1.677; 95% CI 1.247, 2.256) and ID (OR 2.265; 95% CI 1.064, 4.823).Conclusion: This study provides the first insight into end-of-life decision making for people with ID in Switzerland. The results have implications on surrogate decision making for people with ID living in residential homes.