organisations, and finally the wider public health community through the EU Health Forum. The aim is to ensure that as far as possible, policy proposals relating to health are not only evidence and knowledge-based, but are made in an open and collaborative manner and respond to stakeholders’ needs. Looking ahead, further initiatives are envisaged to improve the evidence base for policy-making, including the development of expert scientific committees to provide advice on technical issues, strengthening of health technology assessment in Europe and the creation of a European Centre for Disease Prevention and Control in 2005. This will link national centres, strengthen the EU’s surveil- lance capacity, and act as a focus for research. Note The views expressed are solely those of the author and do not necessarily reflect those of the European Commission. Workshop 18: End-of-life decision making in 6 European countries Organizer: Agnes van der Heide, Luc Deliens Presenters: Georg Bosshard, Tore Nilstun, Eugenio Paci, Michael Norup Advances in medicine have greatly improved the possibilities to treat seriously ill patients and to prolong life or postpone death. As a result, medical decision-making for patients with life-threatening diseases increasingly involves a balanced consideration of medical, psychosocial, ethical and societal aspects. These considerations and the legal background in different countries may modify end-of-life decision-making practices and attitudes of physicians, patients and other actors. It is, however, to a large extent unknown to what degree practices in the field of medical decision-making at the end of life vary in Europe. We performed an empirical study of end-of-life decision-making in 6 European countries: Belgium (Flanders), Denmark, Italy (four areas), the Netherlands, Sweden and Switzer- land (German speaking part). End-of-life decisions are understood to include decisions about whether or not to withhold or withdraw potentially life-prolonging treatment, e.g. mechanical ventilation, tube-feeding, dialysis; decisions about the alleviation of pain or other symptoms with, e.g., opioids, benzodiazepines or barbiturates in dosages large enough to hasten death as a possible or certain side effect; and decisions about euthanasia or physician-assisted suicide, which are in our study defined as the administration, prescription or supply of drugs to end life at the patient’s explicit request. The workshop will start with a short overview of the methods used in the study. The main theme of the workshop will be a discussion of similarities and differences between countries in end-of-life decision making in 4 presentations on (1) decision making characteristics, (2) the role of the patient in the decision making, (3) the intentions of physicians in relation to their practices, and (4) characteristics of decisions to refrain from medical treatment at the end of life. Contact name Agnes van der Heide, MD, PhD, Dept of Public Health, Erasmus MC, University Medical Center Rotterdam, Netherlands Making medical decisions at the end of life Michael Norup, Anna Paldam Folker, Guido Miccinesi on behalf of the EURELD consortium Afdeling for Medicinsk, Videnskabsteori, Panumstituttet, Copenhagen; Centre for the Prevention of Cancer, Florence Background Physicians have to consider medical, ethical, psychosocial and societal aspects when making decisions about the treatment of patients with life-threatening diseases. Aim We studied characteristics of the decision making process for various types of end-of-life decisions in 6 European countries. Methods A similar study was done simultaneously in Belgium, Denmark, the Netherlands, Italy, Sweden and Switzerland. In all participating countries, samples were drawn of death cases that were reported to death registries. The reporting physicians received a mailed questionnaire about the medical decision-making that had preceded the death of the patient involved. All deaths occurred between June 2001 and February 2002. Results Physicians consulted colleagues about their end-of-life decisions in about 40% of all cases in the Netherlands, Belgium and Switzerland, and in less than 20% in the other countries. Nursing staff was involved rather frequently in Belgium (57%) and Switzerland (50%), in about one third of all cases in Denmark, the Netherlands and Sweden and in only 12% in Italy. Decisions remained most frequently not discussed with any other caregiver in Italy and Sweden. Alleviation of symptoms with hastening of death as a possible side effect is less frequently discussed than forgoing potentially life-prolonging treatment in all countries. Conclusions Physicians discuss their end-of-life decisions with colleagues in less than half of all cases in all countries, but the frequency was lowest in the Nordic countries and Italy. Non-treatment decisions seem to be subject to shared decision making more often than alleviation of symptoms at the end of life. Much variance between countries was found in the extent to which physicians discuss their end-of-life decisions with nursing staff. Information in end-of-life decisions: a comparison within Europe Eugenio Paci, Guido Miccinesi, Karin Faisst, on behalf of the EURELD consortium Centre for the Study and Prevention of Cancer, Florence; University of Zurich, Switzerland Background In terminally ill patients, postponing death may not always be a self-evident goal of medicine. Other goals may have to guide medical decision-making for such patients, such as improving the quality of life of patients and their families through the prevention and relief of suffering. Aim We studied the the involvement of patients and their families in medical end-of-life decision making in 6 European countries. Methods Two studies were done simultaneously in Belgium, Denmark, the Netherlands, Italy, Sweden and Switzerland. In all participating countries, samples were drawn of death cases that were reported to death registries. The reporting physicians received a mailed questionnaire about the medical decision-making that had preceded the death of the patient involved. All deaths occurred between June 2001 and February 2002. Furthermore, a written survey was held among physicians about their attitudes towards end-of-life decision making. Results End-of-life decision-making most frequently concerned in- competent patients in all countries. The percentage of competent patients was relatively high in countries where the total number of end-of-life decisions was high: the Netherlands (35%) and Switzer- land (32%). In countries where the total number of end-of-life decisions was low, the percentage of competent patients was also relatively low: Sweden (15%) and Italy (9%). In case patients were competent, the end-of-life decision was discussed with the patient and relatives most frequently in the Netherlands and least frequently in Italy and Sweden. For incompetent patients, the decision was discussed with relatives most frequently in the Netherlands (85%) and Belgium (77%). In Italy and Sweden, more than 50% of all end-of-life decisions for competent and incompetent patients were not discussed with either the patient nor with relatives. Conclusions End-of-life decision making often involves incompetent patients with whom discussion is no longer possible. However, in countries where the frequency of end-of-life decisions is relatively low, such as Italy and Sweden, the extent to which such decisions concern competent patients is also low. Furthermore, decisions are less frequently discussed with patients and relatives in these countries. EUROPEAN JOURNAL OF PUBLIC HEALTH VOL. 13 2003 NO. 4 SUPPLEMENT 32 by guest on December 3, 2015 http://eurpub.oxfordjournals.org/ Downloaded from