Silke Schicktanz

The cultural context of patient's autonomy and doctor's duty: passive euthanasia and advance directives in Germany and Israel

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.

The Diversity of Responsibility: The Value of Explication and Pluralization

PurposeAlthough the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis.MethodsWe start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, personal, and social responsibility. The value of our analytical matrix is illustrated by sorting out the plurality of responsibility models in three cases (organ transplantation, advance directives, and genetic testing).ResultsResponsibility is a relational term involving at least seven relata. The analysis of the relata allows distinguishing between individual versus collective agency, retrospective versus prospective direction, and liability versus power relations. Various bioethical ambiguities result from insufficient, implicit, or inappropriate ascriptions of responsibility.ConclusionsA systematic conception of responsibility is an important tool for bioethical reflection. It allows an in-depth understanding and critique of moral claims on a meta-ethical level without presuming one particular normative approach. Considering the concept of responsibility can also help to complement the current bioethical focus on individual autonomy by including the perspectives of other actors, such as family members or social groups.

What German experts expect from individualized medicine: problems of uncertainty and future complication in physician–patient interaction

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its problems. Interviews with researchers and clinicians (n= 19) were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were (a) disappointments with the limits of the current therapy regimen and clinical practice; (b) problematic impacts on physician–patient relationship; and (c) an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarkers sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures.

The Cultural Context of End-of-Life Ethics: A Comparison of Germany and Israel

End-of-life (EoL) 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 onedimensional constructions of ethical statements as ‘‘social facts’’ to their conflicting and multifaceted embedding within professional, religious, and cultural perspectives. 1 Why Compare Germany and Israel? Germany and Israel constitute opposing examples of professional culture in relation to biomedicine, especially in all questions pertaining to the beginning of life. By adding to this comparison a new focus on end-of-life biomedical dilemmas, several new insights can be gained. First, so far the bioethical comparison between Germany and Israel has generally shown Germany to be more restrictive and Israel to be more permissive. Various studies have shown that German and Israeli professionals, such as genetic counselors, ethicists, and physicians, differ strongly in their moral assessment of various biomedical issues including preimplantation and prenatal genetic diagnosis (PND), stem cell research, and elective abortion. German geneticists expressed extreme caution regarding the use of PND for selective abortion, whereas Israeli geneticists advocated it. 2 Israeli law allows eugenic abortions, even after viability (under certain administrative restrictions), whereas the latest version of the German Criminal Law under which abortion is regulated does not allow them. 3 Does the same opposition also characterize EoL ethics in both countries? On the face of it, German and Israeli bioethical statements concerning EoL dilemmas stand in stark contrast to previous comparisons, as in this context Germany appears to be more permissive and Israel more restrictive. Second, because Germany and Israel have been shown to constitute such professional opposites, their juxtaposition is expected to highlight the context of cultural variation and pluralism in the moral assessment and evaluation of EoL dilemmas. Such differences are often attributed to the prevalent religions in each country. In the case of biomedical dilemmas pertaining to the beginning of life, the differences between Germany and Israel are often attributed to Christian versus Jewish positions toward the moral status of the embryo. Similarly, Judaism and Christianity are also expected to provide opposing influences on national

Public moralities concerning donation and disposition of organs: results from a cross-European study.

There are not many international consensuses in the governance of biomedicine. One that exists concerns a general reluctance toward a commercialization of organ procurement. However, with reference to the problem of “organ scarcity,” there is an increasingly louder call in ethical and legal discourse to “give urgent consideration to any option that may make up the shortfall,” and to establish a debate on financial incentives “without any taboos.” Other ethicists and jurists criticize this development, and warn of injustice, exploitation of the poor, and a commodification of the human body.

Time to reinvent the science of dementia: the need for care and social integration

Objectives: The increasing number of older adults with dementia is a large and growing public health problem. Alzheimers disease, the prevailing form of dementia, is projected to quadruple worldwide. To date, the care and social integration of individuals with dementia is complicated by limited collaborations between biomedicine and other disciplines. The objective of this paper is therefore to reflect on the orientation of biomedicine with regard to the science of dementia, and to articulate a path for moving forward. Methods: The authors drew upon, and expanded, the insights of an interdisciplinary, international workshop entitled ‘Bioethics and the Science of Aging: The Case of Dementia’ held in October 2012 at the University of California in Berkeley.Results: The care of individuals with dementia compels solid interdisciplinary collaborations. There are several issues affecting the care of individuals with dementia: (1) an evolving definition of dementia; (2) the ambiguous benefits of the diagnosis of dementia; (3) ethical conflicts concerning consent processes and clinical trials; and (4) a limited understanding of the perspective of the person with dementia.Conclusion: We argue that it is time for a renewed dialogue between biomedicine and other disciplines -- particularly public health, the social sciences, the medical humanities and bioethics. This interdisciplinary dialogue would facilitate a process of self-reflection within biomedicine. This dialogue will also provide the foundation for equitable public health interventions and will further prioritize the values and preferences of individuals with dementia, as well as their care and social integration.

Exploring the positions of German and Israeli patient organizations in the bioethical context of end-of-life policies.

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.

Qualitative assessment of patients' attitudes and expectations toward BCIs and implications for future technology development

Brain–computer–interfaces (BCIs) are important for the next generation of neuro-prosthesis innovations. Only few pilot projects have tested patients’ abilities to control BCIs as well as their satisfaction with the offered technologies. On the one hand, little is known about patients’ moral attitudes toward the benefit-risk-ratio of BCIs as well as their needs, priorities, and expectations. On the other hand, ethics experts intensively discuss the general risks of BCIs as well as the limits of neuro-enhancement. To our knowledge, we present here the first qualitative interview study with ten chronic patients matching the potential user categories for motor and communication BCIs to assess their practical and moral attitudes toward this technology. The interviews reveal practical and moral attitudes toward motor BCIs that can impact future technology development. We discuss our empirical findings on patients’ perspectives and compare them to neuroscientists’ and ethicists’ perspectives. Our analysis indicates only partial overlap between the potential users’ and the experts’ assessments of BCI-technology. It points out the importance of considering the needs and desires of the targeted patient group. Based on our findings, we suggest a multi-fold approach to the development of clinical BCIs, rooted in the participatory technology-development. We conclude that clinical BCI development needs to be explored in a disease-related and culturally sensitive way.

Medizinethik und Empirie – Standortbestimmungen eines spannungsreichen Verhältnisses

die Empirische Ethik hat in der internationalen Fachdiskussion eine enorme Popularität erreicht. dabei fällt mindestens zweierlei auf: Zum einen gibt es eine intensive Fachdebatte um theoretische, meta-ethische und methodologische Fragen, ob und wenn, auf welche Weise empirische Ergebnisse in medizinethische Überlegungen zu integrieren sind. Zum anderen ist die anzahl von medizinethischen Studien, die explizit Umfragen oder interviews mit Ärzten, Richtern, Pflegepersonal oder Patienten beinhalten, in den letzten Jahren enorm gestiegen. die entsprechenden arbeiten werden in den zwischenzeitlich von zahlreichen medizinethischen Fachzeitschriften unterhaltenen rubriken zu empirical ethics oder clinical ethics publiziert. die Verbindung von normativen, präskriptiven und empirischen, deskriptiven dimensionen spiegelt sich u.a. darin wieder, dass angewandte Ethik zunehmend als ein interdisziplinäres Unternehmen verstanden wird. an diesem müssen nicht nur die Philosophie, theologie und rechtswissenschaft sowie die Medizin, die Naturund ingenieurswissenschaften mitwirken, sondern auch die Sozialund Kulturwissenschaften. dieses aktualitätsphänomen liefert aus unserer Sicht gute Gründe, sich mit dem Verhältnis von Medizinethik und Empirie näher auseinanderzusetzen. die Verbindung normativer und empirischer aspekte in der Medizinethik bietet enorme Chancen, aber auch risiken, welche abzuschätzen und abzuwägen sind. in der aktuellen Entwicklung der Medizinethik spiegeln sich darin auch inhaltliche und strukturelle, institutionelle Veränderungen der ethischen Forschung in der Medizin wider. aus inhaltlicher Sicht soll eine größere Praxisnähe

The relevance of different trust models for representation in patient organizations: conceptual considerations

BackgroundTrust within organizations is important for ensuring members’ acceptance of the organization’s activities and to expand their scope of action. Remarkably, Patient Organizations (POs) that often both function as a forum for self-help and represent patients on the health-political level, have been understudied in this respect. This paper analyzes the relation between trust and representation in POs. We distinguish between two models of representation originating from political theory: the trustee and delegate model and between two types of trust: horizontal and vertical trust.MethodsOur theoretical approach is illustrated with an analysis of 13 interviews with representatives of German POs.ResultsWe have found that the delegate model requires horizontal trust and the trustee model vertical trust. Both models: horizontal/delegate and vertical/trustee exist within single POs.ConclusionsThe representation process within POs demands a balancing act between inclusion of affected persons and strategically aggregating a clear-cut political claim. Trust plays in that process of coming from individual wishes to collective and political standpoints a major role both in terms of horizontal as well as vertical trust. Horizontal trust serves the communication between affected members, and vertical trust allows representatives to be decisive.