ZusammenfassungBei den meisten Patienten, die heute erwartet an einer unheilbaren Krankheit versterben, wird vor ihrem Tod eine bewusste Entscheidung zum Therapieverzicht getroffen. Während dem Therapieverzicht auf Wunsch des Patienten ein wichtiger Stellenwert in der medizinethischen Diskussion zukommt, hat der Umgang mit Forderung nach „unangemessener“ Maximaltherapie bislang weniger Beachtung gefunden. In einer empirischen Studie zur Einbeziehung von Patienten in Entscheidungen zum Therapieverzicht konnten wir zeigen, dass etwa ein Drittel der Patienten auch bei infauster Prognose Lebenszeit durch Maximaltherapie gewinnen möchte. Diese Patienten (...) wurden im Gegensatz zu Patienten mit palliativem Therapieziel häufig nicht in Entscheidungen zur Therapiebegrenzung einbezogen. Hier werden die ethischen Implikationen dieser Praxis untersucht und gefragt, ob ein Therapieverzicht am Lebensende auch gegen den Wunsch des Patienten ethisch zu rechtfertigen ist oder ob Ärzte dem Wunsch des Patienten nach Lebenszeitgewinn auch bei infauster Prognose durch Maximaltherapie nachkommen sollen. Vor dem Hintergrund der gängigen Konzepte zur Rechtfertigung eines einseitigen Therapieverzichts, die für sich genommen zu kurz greifen, wird ein alternatives Entscheidungsmodell vorgestellt, das vier bewertungsrelevante Kriterien vorsieht: die Wirksamkeit einer Maßnahme, die Autonomiefähigkeit des Patienten, die patientenseitige Nutzenbewertung und die Kosten für die Solidargemeinschaft. Je nachdem, welche Kriterien erfüllt sind, rechtfertigen sie eine Entscheidung zum Therapieverzicht oder eine Fortsetzung der Therapie entsprechend dem Patientenwillen. (shrink)

During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot (...) express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported – terminating an already initiated treatment – we propose the concept of ‘evidence shift’ to clarify the ambiguous position of uncertainty in decision making. (shrink)

Die forensische Kinder- und Jugendpsychiatrie steht in einem komplexen Spannungsfeld medizinischer, rechtlicher und sozialer Anforderungen. Die ethischen Herausforderungen, die sich daraus für den stationären Maßnahmenvollzug ergeben, sind bisher kaum untersucht, spezifische Hilfestellungen für Behandelnde fehlen. Diese Studie hat zum Ziel, ethische Themenfelder und Probleme in diesem Bereich zu identifizieren und ein Instrument zur Früherkennung und -intervention ethischer Probleme im Klinikalltag zu entwickeln. Methode: Eine systematische Literaturrecherche sowie eine Beobachtungstudie in der Jugendforensik der Universitären Psychiatrischen Kliniken Basel werden durchgeführt. Die Beobachtungsdaten (...) werden mittels qualitativer Inhaltsanalyse ausgewertet. Das Instrument wird auf der Basis der Resultate nach einer neuen Methode entwickelt. In der Literaturrecherche wurden 14 valide Publikationen identifiziert, die hauptsächlich ethische Probleme der Gerichtspsychiatrie thematisieren wie professionelle Rollenkonflikte, ethische Probleme der Diagnostik und Begutachtung oder der Umgang mit vertraulichen Informationen. Empirische oder empirisch-normative Studien fehlen. In der Beobachtungsstudie wurden 24 ethische Themen und spezifische Probleme identifiziert, besonders häufig sind ethische Fragen zu Moralkompetenzen der Jugendlichen, zur Behandlungsqualität, zum Umgang mit Regeln und Sanktionen und zur Freiheits- und Privatsphäre. Das Instrument zur Früherkennung und -intervention ethischer Probleme enthält die vier Kernelemente Risikofaktoren, Indikatoren, Interventionsplanung und Entscheidungsfindung. Der Maßnahmenvollzug der forensischen Kinder- und Jugendpsychiatrie offenbart ein breites Spektrum ethischer Themen mit spezifischen ethischen Problemen, welche in der Literatur bisher nur unzureichend untersucht sind. Das hier entwickelte Instrument FIEP unterstützt Behandelnde dabei, ethische Probleme frühzeitig zu erkennen und effizient zu bearbeiten. (shrink)

Background and aim Child and adolescent forensic psychiatry is fraught with complex medical, legal, and social tensions. The ethical challenges this entails for inhospital treatment have hardly been investigated, and specific support for health care professionals is lacking. This study identifies ethical issues and problems in this area and develops a tool for early detection and intervention of ethical problems in clinical practice. Methods A systematic literature search and an observational study in adolescent forensics at the University Psychiatric Clinics Basel (...) are conducted. The observation data are evaluated using a qualitative content analysis. The instrument is developed based on the results using a new method. Results In the literature search, 14 valid publications were identified that mainly address ethical conflicts in legal psychiatry, such as professional role conflicts, ethical problems in diagnostics and assessment, or confidentiality issues. Empirical or empirical–normative studies are missing. In the observational study, 24 ethical issues and specific conflicts were identified. Ethical questions about moral competencies of the adolescents, the quality of treatment, the handling of rules and sanctions, and freedom and privacy are particularly common. The Instrument for Early Detection and Intervention of Ethical Problems (FIEP) contains the four core elements risk factors, indicators, intervention planning and decision-making. Conclusions Inhospital treatment in forensic child and adolescent psychiatry reveals a broad spectrum of ethical issues with specific ethical problems, which are hardly investigated in literature so far. The FIEP instrument developed here supports health care practitioners in recognizing ethical problems at an early stage and addressing them efficiently. (shrink)

Clinical ethics consultation has developed from local pioneer projects into a field of growing interest among both clinicians and ethicists. What is needed are more systematic studies on the ethical challenges faced in clinical practice and problem solving through ethics consultation from interdisciplinary perspectives. The Thematic Issue covers a range of topics and includes five recent studies from various European countries and the USA, focusing on issues such as the ethical difficulties of end of life decisions, experiences with newly developed (...) or well established ethics consultation services, and the expectations of physicians in various clinical fields who are still unfamiliar with clinical ethics consultation. The papers included illustrate the interface between different socio-cultural contexts and their ways of dealing with clinical ethics consultation. They deepen the dialogue on clinical ethics consultation that has emerged at the European and International level. (shrink)

This paper provides a systematic literature review, analysis and discussion of methods that are proposed to practise ethics in research and innovation. Ethical considerations concerning the impacts of R&I are increasingly important, due to the quickening pace of technological innovation and the ubiquitous use of the outcomes of R&I processes in society. For this reason, several methods for practising ethics have been developed in different fields of R&I. The paper first of all presents a systematic search of academic sources that (...) present and discuss such methods. Secondly, it provides a categorisation of these methods according to three main kinds: ex ante methods, dealing with emerging technologies, intra methods, dealing with technology design, and ex post methods, dealing with ethical analysis of existing technologies. Thirdly, it discusses the methods by considering problems in the way they deal with the uncertainty of technological change, ethical technology design, the identification, analysis and resolving of ethical impacts of technologies and stakeholder participation. The results and discussion of our literature review are valuable for gaining an overview of the state of the art and serve as an outline of a future research agenda of methods for practising ethics in R&I. (shrink)

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations. Respecting parent/ patient’s autonomy also means respecting the patient’s wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients’ wishes during the first stages of life and how the principle of patient’s autonomy was handled. The case series has a qualitative (...) retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases. Through the structured EC minutes aspects of patient / parents’ wishes could be identified explicitly. Overall the patient / parents’ wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment. The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not “automatically” fulfil the treatment requests of the patients and parents. (shrink)

Empirical bioethics is commonly understood as integrating empirical research with normative-ethical research in order to address an ethical issue. Methodological analyses in empirical bioethics mainly focus on the integration of socio-empirical sciences and normative ethics. But while there are numerous multidisciplinary research projects combining life sciences and normative ethics, there is few explicit methodological reflection on how to integrate both fields, or about the goals and rationales of such interdisciplinary cooperation. In this paper we will review some drivers for the (...) tendency of empirical bioethics methodologies to focus on the collaboration of normative ethics with particularly social sciences. Subsequently, we argue that the ends of empirical bioethics, not the empirical methods, are decisive for the question of which empirical disciplines can contribute to empirical bioethics in a meaningful way. Using already existing types of research integration as a springboard, five possible types of research which encompass life sciences and normative analysis will illustrate how such cooperation can be conceptualized from a methodological perspective within empirical bioethics. We will conclude with a reflection on the limitations and challenges of empirical bioethics research that integrates life sciences. (shrink)

Philosophical arguments stemming from the public health ethics arena suggest that public health interventions ought to be subject to normative inquiry that considers relational values, including concepts such as solidarity, reciprocity and health equity. As yet, however, the extent to which ‘public’ values influence the ‘autonomous’ decisions of the public remains largely unexplored. Drawing on interviews with 50 men in Vancouver, Canada, this study employs a critical discourse analysis to examine participants’ decisions and motivations to voluntarily access HIV testing and/or (...) to accept a routine HIV test offer. Within a sub-set of interviews, a transactional discourse emerged in which the decision to test features an arrangement of ‘giving and receiving’. Discourses related to notions of solidarity emphasize considerations of justice and positions testing as a ‘public’ act. Lastly, ‘individualistic’ discourses focused on individual-level considerations, with less concern for the broader public ‘good’. These findings underscore how normative dimensions pertaining to men’s decisions to test are dialectically interrelated with the broader social and structural influences on individual and collective health-related behaviour, thereby suggesting a need to advance an explicit empirical-normative research agenda related to population and public health intervention research. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

Der Erwerb von Fach- und Forschungskompetenzen kann im besonderen Maße in Lehrveranstaltungen gefördert werden, die Studierende mit der Bewältigung komplexer Probleme konfrontieren. In diesem Artikel stellen wir didaktische Überlegungen zum Forschenden Lernen in der Empirischen Medizinethik dar. Ausgehend von der Theorie des Pragmatismus zeigen wir auf, wie Forschendes Lernen in Lehrangeboten verwirklicht und für die Förderung medizinethischer Kompetenzen genutzt werden kann. Wir fokussieren dabei auf Lehr- und Lernprojekte, in denen die selbstorganisierte Durchführung empirisch-ethischer Forschung für Studierende prozesshaft erfahrbar gemacht werden (...) kann. Solche Lehrangebote bieten große Potenziale, vor allem im Hinblick auf die Erweiterung von Reflexionskompetenzen der Studierenden. Eine Aufnahme solcher Lehrangebote in die fakultative Medizinethik-Lehre wird im Hinblick auf kontextuelle Herausforderungen diskutiert. (shrink)

Definition of the problem The acquisition of technical and research skills can be promoted in particular in courses that confront students with complex problems. In this article, we present didactic reflections on learning through self-organized inquiry in empirical medical ethics. Arguments Based on the theory of pragmatism, we show how a specific form of research-based learning courses can be realized to promote medical ethical skills. We focus on projects in which students can experience the process of conducting empirical–ethical research. Conclusion (...) Research-based learning through self-organized inquiry courses offer great potential, especially with regard to expanding students’ reflexive and reflective competencies. We discuss the inclusion of such facultative courses in the medical ethics curriculum with regard to its contextual challenges. (shrink)

After the ‘empirical turn’ in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the ‘committed researcher’ approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the ‘embedded researcher’ and ‘deliberative engagement’, we highlight its main features: it is patient-oriented, it is implemented by collegial and multidisciplinary teams, it uses (...) an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the ‘is vs. ought’ distinction. We argue that our ‘commitment researcher’ approach to clinical ethics research takes concerned people’s life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake. (shrink)

In this article we report findings from a qualitative study that explored how doctors and nurses in nursing homes describe professional collaboration around dying patients. The study also examined the consequences this can have for the life-prolonging treatment of patients and the care of them and their relatives. Nine doctors and 10 nurses from 10 Norwegian nursing homes were interviewed about their experience of decision-making processes on life-prolonging treatment and care. The findings reveal that the frameworks for the professional collaboration (...) and organization of physicians and nurses prevent patient treatment and care complying with ethical considerations and the law. These conditions have a challenging impact on the care of dying patients and their relatives. (shrink)

Research questions and backgroundThis study explores a highly controversial issue of medical care in Germany: the decision to withhold or withdraw mechanical ventilation in critically ill patients. It analyzes difficulties in making these decisions and the physicians’ uncertainty in understanding the German terminology of Sterbehilfe, which is used in the context of treatment limitation. Used in everyday language, the word Sterbehilfe carries connotations such as helping the patient in the dying process or helping the patient to enter the dying process. (...) Yet, in the legal and ethical discourse Sterbehilfe indicates several concepts: (1) treatment limitation, i.e., withholding or withdrawing life-sustaining treatment (passive Sterbehilfe), (2) the use of medication for symptom control while taking into account the risk of hastening the patient’s death (indirekte Sterbehilfe), and (3) measures to deliberately terminate the patient’s life (aktive Sterbehilfe). The terminology of Sterbehilfe has been criticized for being too complex and misleading, particularly for practical purposes. Materials and methods An exploratory study based on qualitative interviews was conducted with 28 physicians from nine medical intensive care units in tertiary care hospitals in the German federal state of Baden-Wuerttemberg. The method of data collection was a problem-centered, semi-structured interview using two authentic clinical case examples. In order to shed light on the relation between the physicians’ concepts and the ethical and legal frames of reference, we analyzed their way of using the terms passive and aktive Sterbehilfe. Results Generally, the physicians were more hesitant in making decisions to withdraw rather than withhold mechanical ventilation. Almost half of them assumed a categorical prohibition to withdraw any mechanical ventilation and more than one third felt that treatment ought not to be withdrawn at all. Physicians showed specific uncertainty about classifying the withdrawal of mechanical ventilation as passive Sterbehilfe, and had difficulties understanding that terminating ventilation is not basically illegal, but the permissibility of withdrawal depends on the situation. Conclusions The physicians’ knowledge and skills in interpreting clinical ethical dilemmas require specific improvement on the one hand; on the other hand, the terms passive and aktive Sterbehilfe are less clear than desirable and not as easy to use in clinical practice. Fear of making unjustified or illegal decisions may motivate physicians to continue (even futile) treatment. Physicians strongly opt for more open discussion about end-of-life care to allow for discontinuation of futile treatment and to reduce conflict. (shrink)