Advance directives have been hailed for two decades as the best way to safeguard patients’ autonomy when they are totally or partially incompetent. In many national contexts they are written into law and they are mostly associated with end-of-life decisions. Although advocates and critics of ADs exchange relevant empirical and theoretical arguments, the debate is inconclusive. We argue that this is so for good reasons: the ADs’ project is fraught with tensions, and this is the reason why they are both (...) important and deeply problematic. We outline six such tensions, and conclude with some positive suggestions about how to better promote patients’ autonomy in end-of-life decision. We argue that ADs should continue to be an option but they cannot be the panacea that they are expected to be. (shrink)

End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. The paper is based on (...) a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel. Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. As the group discussions indicate, there are no clear-cut positions anchored in “nationality,” “culture,” or “religion.” Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed. (shrink)

Die Entscheidung für oder gegen lebensverlängernde Behandlungsmaßnahmen geht inzwischen der Hälfte aller Todesfälle in Europa voraus. Sie wird im klinischen Alltag häufig als ethische Herausforderung wahrgenommen, zudem sind unter Klinikern juristische Unsicherheiten und Fragen der korrekten Vorgehensweise verbreitet. Die hier vorgestellte Münchner Leitlinie zu Entscheidungen am Lebensende soll rechtliche Unsicherheit reduzieren, Klinikumsmitarbeiter für die ethische Dimension von Therapieentscheidungen am Lebensende sensibilisieren und ethisch begründete Entscheidungen fördern. Aus organisationsethischer Perspektive soll mit der Leitlinie eine Reflexion und Meinungsbildung zu einem ethisch relevanten (...) Themenbereich erfolgen und ein Beitrag zur Qualitätssicherung der Patientenversorgung und damit auch zur Patientenzufriedenheit geleistet werden. Die Prozesse der Leitlinienentwicklung, -aktualisierung und -implementierung werden vorgestellt. Die wesentlichen inhaltlichen Elemente der Leitlinie mit Darstellung der Rechtslage, der Definition zentraler Begriffe und Klärung medizinischer Entscheidungskriterien werden an Hand eines Entscheidungsalgorithmus dargestellt. Inhalt und Prozess der Leitlinienentwicklung werden auf die folgenden organisationsethischen Qualitätskriterien hin überprüft: deliberativer Prozess, inhaltliche Transparenz, repräsentative Zusammensetzung der Arbeitsgruppe, Implementierung und Evaluation der Leitlinie. Institutionen, die diese Leitlinie übernehmen wollen, sollten diese von einem autorisierten Gremium überprüfen lassen und auf die spezifischen Bedürfnisse ihrer Institution adaptieren. Hierfür ist eine vorgeschaltete Bedarfserhebung hilfreich. In dem Gremium sollten all diejenigen vertreten sein, die in der Folge mit der Leitlinie arbeiten werden. (shrink)

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)