Medical end-of-life decisions in Switzerland 2001 and 2013: Who is involved and how does the decision-making capacity of the patient impact?

QUESTIONS UNDER STUDY: In Switzerland, the prevalence of medical end-of-life practices had been assessed on a population level only once - in 2001 - until in 2013/14 an identical study was conducted. We aimed to compare the results of the 2001 and 2013 studies with a special focus on shared decision-making and patients' decision-making capacity. METHODS: Our study encompassed a 21.3% sample of deaths among residents of the German-speaking part of Switzerland aged 1 year or older. From 4998 mailed questionnaires, 3173 (63.5%) were returned. All data were weighted to adjust for age- and sex-specific differences in response rates. RESULTS: Cases with at least one reported end-of-life practice significantly increased from 74.5% (2001) to 82.3% (2013) of all deaths eligible for an end-of-life decision (p <0.001). In 51.2% there was a combination of at least two different end-of-life decisions in one case. In relation to discussion with patients or relatives and otherwise expressed preferences of the patient, 76.5% (74.5-78.4%) of all cases with reported medical end-of-life practice in 2013 (2001: 74.4%) relied on shared decision-making, varying from 79.8% (76.5-82.7%) among not at all capable patients to 87.8% (85.0-90.2%) among fully capable patients. In contrast to a generally increasing trend, the prevalence of end-of-life practices discussed with fully capable patients decreased from 79.0% (75.3-82.3%) in 2001 to 73.2% (69.6-76.0%) in 2013 (p = 0.037). CONCLUSIONS: Despite a generally high incidence of end-of-life practices in Switzerland, there remains potential for further improvement in shared decision-making. Efforts to motivate physicians to involve patients and relatives may be a win-win situation.