What is the status of empirical contributions to bioethics, especially to clinical bioethics? Where is the empirical approach discussed in bioethics related to the ongoing debate about principlism versus casuistry? Can we consider an integrative model of research in medical ethics and which empirical methodology could then be valuable, the quantitative or the qualitative? These issues will be addressed in the first, theoretical part of the paper. The concept of the “embedded researcher” presented in this article was stimulated by the (...) two questions, (1) how can we safeguard that our research will yield valid and meaningful results to practice? and (2), how can we convince clinical colleagues that medical ethics offers relevant contributions to the analysis and solution of problems? One tentative answer has been our effort to elaborate a coherent methodological research approach in the field of end-of-life issues integrating qualitative and quantitative as well as casuistic methodologies. This development is characterized in the second part describing the ECOPE Study (short title)“Ethical Conditions Of Passive Euthanasia.” The achievements and limitations of the suggested approach of the “embedded researcher” are discussed referring to 3 examples of our joint studies about ethical issues concerning(1) critical decision-making in neonatology(2) limitation of treatment in intensive care(3) problems with doctor-patient conversation at the end of life in oncologyConclusions from our studies are put to discussion in the final part of the paper about how to further develop research in the field of end-of-life care and, maybe,clinical bioethics as a whole. (shrink)

The ethical tensions inherent in all Baby Doe treatment decisions are compounded by medical uncertainty. Physicians both here and abroad have adopted various strategies. Swedish doctors tend to withhold treatment from the beginning from infants for whom statistical data suggest a grim prognosis. The British are more likely to initiate treatment but withdraw it if the infant appears likely to die or suffer severe brain damage. The trend in the U.S. is to start treating any baby who is potentially viable (...) and continue until it is virtually certain that the infant will die. The “least worst” strategy is an individualized one: starting treatment gathering data, and then reassessing the decision. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

This paper examines parents experiences of medical decision-making and coping with having a critically ill baby in the Neonatal Intensive Care Unit (NICU) from a cross-cultural perspective (France vs. U.S.A.). Though parents experiences in the NICU were very similar despite cultural and institutional differences, each system addresses their needs in a different way. Interviews with parents show that French parents expressed overall higher satisfaction with the care of their babies and were better able to cope with the loss of their (...) child than American parents. Central to the French parents perception of autonomy and their sense of satisfaction were the strong doctor–patient relationship, the emphasis on medical certainty in prognosis versus uncertainty in the American context, and the sentimental work" provided by the team. The American setting, characterized by respect for parental autonomy, did not necessarily translate into full parental involvement in decision-making, and it limited the rapport between doctors and parents to the extent of parental isolation. This empirical comparative approach fosters a much-needed critique of philosophical principles by underscoring, from the parents perspective, the lack of emotional work" involved in the practice of autonomy in the American unit compared to the paternalistic European context. Beyond theoretical and ethical arguments, we must reconsider the practice of autonomy in particularly stressful situations by providing more specific means to cope, translating the impersonal language of rights" and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices. (shrink)