The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the patient’s preferred treatment (...) option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. The corresponding German term ‘Betroffenheit’ characterizes on the one hand a relation between a state of affairs and a person and on the other an emotional reaction that involves feelings like concern and empathy with the suffering of others. An example for the increasing relevance of being affected is the postulation of the participation of people with disabilities and (...) chronic or acute diseases in the discourse, as partly realized in the German National Ethics Council or the Federal Joint Committee. Nevertheless, not only on the political level, the resistance against the participation of affected people is still strong; the academic debate seems to be cross-grained, too. Against this background, we explore the meaning and argumentative role of the concept of being affected as it is used by affected and lay people themselves. Our analysis is based on four focus group discussions in which lay people, patients and relatives of patients discuss their attitudes towards biomedical interventions such as organ transplantation and genetic testing. This setting allows for a comparison of how affected and non-affected people are concerned and deliberate about medical opportunities, but also of how they position themselves as being affected or non-affected with respect to (scientific) knowledge and morality. On this basis, we discuss the normative relevance of being affected for the justification of political participation. (shrink)

Die enorme Bedeutung, die Patientenverfügungen in der aktuellen ethisch-rechtlichen Diskussion zukommt, steht in gewissem Widerspruch zur geringen öffentlichen Bereitschaft, eine solche abzufassen. Dies wirft die ethische Frage auf, welche Argumente für das Abfassen von Patientenverfügungen sprechen. Zentral sind hierbei strebensethische Aspekte, die auf das Wünschenswerte und Lebenskluge einer solchen Entscheidung abheben. Mit einem um die soziokulturelle Perspektive erweiterten Identitätskonzept lässt sich für die Patientenverfügung als sinnvolles Instrument der Selbst-Deutung und Lebensplanung argumentieren. Zugleich verweist die soziokulturelle Dimension auf neue ethische Probleme (...) der Interpretation durch Dritte und der Stellvertreterrolle. Dabei wird ein Defizit in der sozial-empirischen und ethischen Auseinandersetzung um die Bedeutung von Interpretation, Beratung und Verantwortung von Stellvertretern offenkundig. (shrink)

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico-legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but limits (...) their effect and form through complex medico-legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico-legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient-centred and addresses the psycho-social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances. (shrink)

"A book from the Park Ridge Center for the Study of Health, Faith, and Ethics." Includes bibliographical references (p. [141]-195) and index.

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding (...) of ethics,” addressing three different issues: the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, the normative relevance of such lay moralities for the justification of ethical decisions, and the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

How can liberal democracy best be realized in a world fraught with conflicting new forms of identity politics and intensifying conflicts over culture? This book brings unparalleled clarity to the contemporary debate over this question. Maintaining that cultures are themselves torn by conflicts about their own boundaries, Seyla Benhabib challenges the assumption shared by many theorists and activists that cultures are clearly defined wholes. She argues that much debate--including that of "strong" multiculturalism, which sees cultures as distinct pieces of a (...) mosaic--is dominated by this faulty belief, one with grave consequences for how we think injustices among groups should be redressed and human diversity achieved. Benhabib masterfully presents an alternative approach, developing an understanding of cultures as continually creating, re-creating, and renegotiating the imagined boundaries between "us" and "them." Drawing on contemporary cultural politics from Western Europe, Canada, and the United States, Benhabib develops a double-track model of deliberative democracy that permits maximum cultural contestation within the official public sphere as well as in and through social movements and the institutions of civil society. Agreeing with political liberals that constitutional and legal universalism should be preserved at the level of polity, she nonetheless contends that such a model is necessary to resolve multicultural conflicts. Analyzing in detail the transformation of citizenship practices in European Union countries, Benhabib concludes that flexible citizenship, certain kinds of legal pluralism and models of institutional powersharing are quite compatible with deliberative democracy, as long as they are in accord with egalitarian reciprocity, voluntary self-ascription, and freedom of exit and association. The Claims of Culture offers invaluable insight to all those, whether students or scholars, lawyers or policymakers, who strive to bridge the gap between the theory and practice of cultural politics in the twenty-first century. (shrink)

Introduction -- Bioethics as scholarship -- Language, narrative and rhetoric in bioethics -- Euthanasia, the Nazi analogy and the slippery slope -- Heredity, genes and reproductive politics -- Human experimentation -- Thalidomide.

Background: Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units , including those in Israel. Several results of the Israeli subsample were different to those of the overall sample.Objective: The objective of this article was to explore these differences and provide a possible explanation based (...) on the impact of culture on end of life decision making.Method: All adult patients admitted consecutively to three Israeli ICUs who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively . These patients were compared with a similar sample taken from the larger study carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation , brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process . The data also included patient characteristics , specific therapies limited, and the method of SDP.Results: The majority of patients had treatment withheld, none underwent SDP, 62 received CPR , 31 had brain death , and 18 underwent withdrawal of treatment . The primary reason given for limiting treatment was that the patient was unresponsive to therapy . End of life discussions were held with 132 families , the vast majority of which revolved around withholding treatment and the remainder concerned withdrawing treatment .There was a statistically significant association between the type of end of life decision and region—that is, the northern region of Europe, the central region, the southern region, and Israel.Conclusions: Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions. (shrink)

In Matters of Life and Death Elliot Dorff thoroughly addresses this unavoidable confluence of medical technology and Jewish law and ethics.

"Human dignity" has been enshrined in international agreements and national constitutions as a fundamental human right. The World Medical Association calls on physicians to respect human dignity and to discharge their duties with dignity. And yet human dignity is a term--like love, hope, and justice--that is intuitively grasped but never clearly defined. Some ethicists and bioethicists dismiss it; other thinkers point to its use in the service of particular ideologies. In this book, Michael Barilan offers an urgently needed, nonideological, and (...) thorough conceptual clarification of human dignity and human rights, relating these ideas to current issues in ethics, law, and bioethics. Combining social history, history of ideas, moral theology, applied ethics, and political theory, Barilan tells the story of human dignity as a background moral ethos to human rights. After setting the problem in its scholarly context, he offers a hermeneutics of the formative texts on Imago Dei; provides a philosophical explication of the value of human dignity and of vulnerability; presents a comprehensive theory of human rights from a natural, humanist perspective; explores issues of moral status; and examines the value of responsibility as a link between virtue ethics and human dignity and rights. Barilan accompanies his theoretical claim with numerous practical illustrations, linking his theory to such issues in bioethics as end-of-life care, cloning, abortion, torture, treatment of the mentally incapacitated, the right to health care, the human organ market, disability and notions of difference, and privacy, highlighting many relevant legal aspects in constitutional and humanitarian law. (shrink)

End-of-life decisions concerning euthanasia, stopping life-support machines, or handling advance directives are very complex and highly disputed in industrialized, democratic countries. A main controversy is how to balance the patient’s autonomy and right to self-determination with the doctor’s duty to save life and the value of life as such. These EoL dilemmas are closely linked to legal, medical, religious, and bioethical discourses. In this paper, we examine and deconstruct these linkages in Germany and Israel, moving beyond one-dimensional constructions of ethical (...) statements as “social facts” to their conflicting and multifaceted embedding within professional, religious, and cultural perspectives. (shrink)

Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that (...) were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives—general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs. (shrink)

This book is a comprehensive, empirically-grounded exploration of the relationship between bioethics, culture, and the perspective of being affected. It provides a new outlook on how complex "bioethical" issues become questions of everyday life. The authors focus on two contexts, genetic testing and end-of-life care, to locate and demonstrate emerging themes of responsibility, such as self-responsibility, responsibility for kin, and the responsibility of society. Within these themes, the duty to know versus the right not to know one's genetic fate (in (...) the context of genetic testing), or the sanctity of life versus self-determination (in the context of end of life care) are identified as culturally embedded dilemmas that are very much relevant for lay persons. Furthermore, cultural factors such as religion, history, utopian and dystopian views of biomedical technologies, outlooks on the body and on health/illness, and citizenship are examined. Health issues are increasingly becoming a question of assessing risk and responsibility: How can we better prepare ourselves for the future? We all make such assessments in a way that combines personal inclinations, professional recommendations, and cultural framings. There is still much to be learned about the interplay between these three dimensions. (shrink)

: This paper examines the main Jewish sources relevant to end-of-life ethics, two Talmudic stories, the early modern code of law (Shulhan Aruch), and contemporary Halakhaic (religious law) responsa. Some Orthodox rabbis object to the use of artificial life support that prolongs the life of a dying patient and permit its active discontinuation when the patient is suffering. Other rabbis believe that every medical measure must be taken in order to prolong life. The context of the discussion is the recent (...) release of the "Steinberg Report," which proposes a law regulating end-of-life issues in Israel. It is argued that the Orthodox rabbis base their views on a strongly positivist concept of the religious law. The rabbis deliberate the law as a manifestation of the will of God and try to stretch the law as much as possible in order to benefit the patient, even when it is good for the patient to die. Direct and active actions that kill are prohibited; certain forms of passive euthanasia and contrivances that terminate life support without needing direct human action are accepted. (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)

The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example of this (...) discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive. (shrink)

ZusammenfassungDie enorme Bedeutung, die Patientenverfügungen in der aktuellen ethisch-rechtlichen Diskussion zukommt, steht in gewissem Widerspruch zur geringen öffentlichen Bereitschaft, eine solche abzufassen. Dies wirft die ethische Frage auf, welche Argumente für das Abfassen von Patientenverfügungen sprechen. Zentral sind hierbei strebensethische Aspekte, die auf das Wünschenswerte und Lebenskluge einer solchen Entscheidung abheben. Mit einem um die soziokulturelle Perspektive erweiterten Identitätskonzept lässt sich für die Patientenverfügung als sinnvolles Instrument der Selbst-Deutung und Lebensplanung argumentieren. Zugleich verweist die soziokulturelle Dimension auf neue ethische Probleme (...) der Interpretation durch Dritte und der Stellvertreterrolle. Dabei wird ein Defizit in der sozial-empirischen und ethischen Auseinandersetzung um die Bedeutung von Interpretation, Beratung und Verantwortung von Stellvertretern offenkundig. (shrink)

This article first appeared in Life and Learning XIV: Proceedings of the Fourteenth University Faculty for Life Conference, and is reprinted here with the kind permission of the editor, Joseph W. Koterski, S.J..Despite the enormous attention it received, the Terri Schindler-Schiavo litigation is not legally significant. The litigation involved the application of a fairly well-settled legal framework. This framework permitted, however, an unjust result. The controversy over Terri’s fatehas, though, helped to focus attention on a consensus that is in need (...) of re-examination. This paper explores the lessons that ought to be learned from the Terri Schindler-Schiavo litigation. After briefly discussing the basic facts and the complex litigation history, the paper considers the relevant federal constitutional and Florida law. The paper then critiques Florida law and explains the legal and moral considerations that ought to inform the re-examination that is so sorely needed. The most important effort needed is to restore the sanctity of life ethic. (shrink)

Cultural models of health, illness, and moral reasoning are receiving increasing attention in bioethics scholarship. Drawing upon research tools from medical and cultural anthropology, numerous researchers explore cultural variations in attitudes toward truth telling, informed consent, pain relief, and planning for end-of-life care. However, culture should not simply be equated with ethnicity. Rather, the concept of culture can serve as an heuristic device at various levels of analysis. In addition to considering how participation in particular ethnic groups and religious traditions (...) can shape moral reasoning, bioethicists need to consider processes of socialization into professional cultures, organizational cultures, national civic culture, and transnational culture. From the local world of the community clinic or oncology unit to the transnational workings of human rights agencies, attentiveness to the concept of culture can illuminate how patients, family members, and health care providers interpret illness, healing, and moral obligations. (shrink)

This article presents the new German law on advance directives from 1 September 2009. The history of the parliamentary process of this law is described, the present regulations are explained, their relevance for medical practice discussed and shortcomings are identified. Finally, the new law is compared with other regulations in the international context. Previously established legal practice in Germany has now become largely confirmed by the new law: An advanced directive must be respected in any decision concerning medical treatment, regardless (...) of the stage of the illness. It can be informally revoked at any time, even with limited decision-making capacity. Nobody may be obliged to issue a directive in any way. Advance directives do not need notarisation or routine updating after certain time intervals. Provided that the patient, who is no longer mentally competent, has issued a lasting power of attorney, or provided that the patient has been appointed a healthcare proxy by the courts, this authorised surrogate must assert the patient's will. The role of the guardianship court is clarified: it only needs to be involved in cases of disagreement as to the patient's will. The new German law thus combines more legal certainty with a liberal emphasis on patient autonomy and flexible, adaptable regulations. (shrink)

Book reviewed in this article: Bioethics and Secular Humanism: The Search for a Common Morality. By H. Tristram Engelhardt, Jr.

As is evident from the other articles in this special issue, end-of-life treatment has engendered a vigorous dialogue in the United States over the past few decades because decision making at the end of life raises broad and difficult ethical issues that touch on health professionals, patients, and their families. This concern is exacerbated by the high cost related to the end of life in the U.S. Moreover, in light of demographic patterns, progressively scarce health care resources, and an expanding (...) array of life-saving technologies, decisions at the end of life are becoming problematic matters of public and, thus, scholarly concern in most countries. Issues at the end of life are central not only to bioethics but also raise important ancillary policy dimensions. (shrink)