Today, almost two thirds of deaths in Switzerland are not unexpected. How does the cultural context specific to each linguistic region influence end-of-life decisions? Researchers from the universities of Zurich (UZH) and Geneva (UNIGE) noticed significant differences between regions. However, these differences are not always more important than those observed between these regions and the countries with which they share the same language. These results, published in the journal BMC Medicine, are important to help ground debates on end of life decisions on facts, and highlight the need for everyone to reflect on what it means to die a dignified death.
Questions related to end of life decisions are often the subject of heated debates, in Switzerland as elsewhere. But what are the realities faced by physicians, patients and their families? Through several studies, the National Research Programme End of Life (NRP 67), funded by the SNSF, aims to better understand the medical and social issues at stake. "Our project was part of this national programme: we wanted to examine how the cultural differences inherent to a multilingual country like ours influenced end-of-life decisions, in spite of a common federal legislative framework", explains Samia Hurst, Director of the Institute for History, Ethics and Humanities at the Faculty of Medicine of the UNIGE and co-investigator in the project Medical end-of-life decisions: prevalence and trends in Switzerland.
To better understand the reality of the end of life, the researchers sent an anonymous questionnaire to nearly 9,000 physicians who had signed one or more death certificates - 4,998 in German-speaking Switzerland, 2,965 in French-speaking Switzerland and 1,000 in Ticino, for a response rate ranging from nearly 52% in French-speaking Switzerland to over 63% for German-speaking doctors. Matthias Bopp of the Institute for Epidemiology, Biostatistics and Prevention at the University of Zurich emphasizes:
"The considerable response rate strongly suggests that the participating physicians appreciated our efforts to ensure the strictest anonymity of the respondents."
When facing death, the Swiss are different
In more than three-quarters of cases, and in all regions, deaths were preceded by one or more end-of-life decisions, mainly decisions to withhold or withdraw life-sustaining treatment (70.0% in German-speaking Switzerland, 59.8% in French-speaking Switzerland and 57.4% in Italian-speaking Switzerland). The use of assisted suicide remained marginal, with about 1.5% of all expected deaths in French and German-speaking Switzerland, and no case reported in Italian-speaking Switzerland. The Swiss legislative framework authorizes assisted suicide, in which persons willing to die are given a lethal drug dose they have to take themselves. Active euthanasia, in which another person administers the deadly drug, is on the contrary prohibited. The involvement of patients in the decision-making process was significantly lower in Ticino as in the rest of the country. "A result that cannot be explained by objective clinical differences, and which does not fail to question us", says Matthias Bopp. To interpret these differences, the authors assume, when it comes to making such decisions, a more family-based approach in Ticino than in other parts of Switzerland - notably French-speaking Switzerland.
Similar studies have been conducted in Italy and France, allowing international comparison on a linguistic basis. Samia Hurst: "If we don't die the same way in all regions of our country, our approaches are still more similar in relation to each other than that of our neighbours. In some respects, French-speaking Switzerland thus resembles German-speaking Switzerland more than it resembles France, which is in line with the increased role of patient autonomy in Switzerland. Nevertheless, the differences observed between our regions are similar to the differences noted between our neighbours, thus also suggesting cultural specificities associated with the language regions." Unfortunately, neither Germany nor Austria have ever carried out such a study, an important limiting factor in this transnational analysis.
Promoting advance directives
More and more people in Switzerland are aware of the possibility of drafting advance directives detailing their end-of-life choices. However, few of us do write them. "End-of-life decisions are frequent; it is therefore important for each of us to reflect on what our priorities will be at that time. What do we hope for? What do we fear? Finally, when choices must be made, what is most important to us? Furthermore, people to should, if possible, have this discussion with a trusted health professional. It allow them not to not be alone, but it will also help them to understand correctly the medical and technical aspects of their decisions as well as their consequences", the authors stress. To this end, specific health insurance mechanisms could be put in place to encourage physicians to take all the necessary time for this dialogue.