Advance directives and end-of-life decisions in Switzerland: role of patients, relatives and health professionals

Abstract

BackgroundLittle is known in Europe about end-of-life (EOL) decisions and advance directives (AD), particularly in patients with severe advanced disease. Switzerland is a multicultural and multilingual federal country and has the particularity of being divided into four linguistic and cultural regionsObjectiveTo understand better in different regions of Switzerland which specific patient's characteristics could have an impact on their decision to complete AD or not.Design/setting/participantsProspective study conducted in four palliative care units. Patients with an advanced oncological disease, fluent in French, German or Italian and with a Mini-Mental State Examination >20 were included. Demographic data, symptom burden (Edmonton Symptom Assessment System, ESAS; Hospital Anxiety and Depression Scale, HADS) and spiritual well-being (Functional Assessment of Chronic Illness Therapy-Spiritual well-being, FACIT-sp) have been assessed. A structured questionnaire has been completed by patients, their relatives and health professionals.Results143 patients were included (mean age 68.3 years; 62 male). 41 completed ADs. No particular features were associated with the completion of ADs. Most patients were satisfied with the medical information received. A third of them were not worrying about their future, especially those living in the German-speaking part. Should they become unable to communicate, 87 expected their relative to transmit their own wishes, but only 38 had spoken recently with them about what they wanted. 23 of the 69 included relatives would like to play a more active role in decision-making.ConclusionsThese results illustrate the fact that terminally ill patients wish to be active in decision-making, but only seldom transmit their wishes to their relative or complete a written document. The discussion about ACP should be defined according to the particularity of each region and the role of healthcare professionals’ attitudes towards ADs, but we should also be creative and find other ways to promote shared decision-making.