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

Abstract

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) (χ2 (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.

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

“…An end-of-life decision was made for 53.7% of all deaths. Decisions to withhold treatment had been made significantly more often for people with ID than for people with other disabilities (Wicki, 2016). This number is more comparable to Wagemans et al 2010 These previous studies on end-of-life decisions of people with disabilities in Switzerland analyzed deaths between 2008 and 2012-2013.…”

“…Previous studies on end-of-life decisions for people with disabilities who died in Switzerland between 2008 and 2012 (Wicki & Hättich, 2017) and in 2013 (Wicki, 2016) had found, the prevalence of end-of-life decisions to be high (70.4 and 53.7% of all deaths, respectively). In the present study on deaths in residential homes for people with disabilities in Switzerland from 2015 to 2017, an end-of-life decision was made in 86% of all nonsudden deaths (54.7% of all deaths).…”

“…O'Leary, Cooper, and Hughes-McCormack (2018) found that people with ID still die on average 20 years earlier than the general population. Although life expectancy has increased in recent decades the same inequality gap with the general population remains (O'Leary et al, 2018;Wicki, 2016;Wicki & Hättich, 2017). Oppewal et al (2018) collected immediate and primary cause of death from the medical files of 1,050 older adults with ID within the Healthy Aging and Intellectual Disabilities study.…”

“…Although physicians and care staff agree that the quality of life is highly important, the wishes of people with ID (especially of people with severe/profound ID) are often not considered in decisions on potentially burdensome medical interventions (Bekkema, de Veer, Wagemans, Hertogh, & Francke, 2014;Stein & Kerwin, 2010;Tuffrey-Wijne & McEnhill, 2008). In 2013, a crosssectional survey in Switzerland explored the prevalence and nature of end-of-life decisions for people with disabilities in residential homes who died between 2008 and 2012; a high prevalence of end-of-life decisions was found for people with disabilities (70.4% of all deaths: sudden and expected deaths) (Wicki, 2016;Wicki & Hättich, 2017). This prevalence was high compared with other studies: a study analyzing the prevalence of end-of-life decisions in a residential home in the Netherlands found that an end-of-life decision was recorded for 57% of deaths in their cohort of people with ID (Wagemans, Lantmande-Valk, Tuffrey-Wijne, Widdershoven, & Curfs, 2010).…”

“…A second study on end-of-life decisions in residential homes for people with disabilities was conducted in 2014 (Wicki, 2016). In that study the questions on end-of-life decisions were adapted to the 2003 study in six European countries (van der Heide et al, 2003).…”