The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)

Background Concepts of health have been widely discussed in the philosophy and ethics of medicine. Parallel to these theoretical debates, numerous empirical research projects have focused on subjective concepts of health and shown their significance for individuals and society at various levels. Only a few studies have so far investigated the concepts of health of non-professionals and professionals involved in long-term home care and discussed these empirical perspectives regarding moral responsibilities. Objectives To identify the subjective concepts of the health of (...) non-professionals (care recipients, informal caregivers) and professionals (registered nurses) involved in long-term home care and to discuss them against the background of existing normative guidelines addressing non-professionals and professionals’ responsibilities and rights concerning health. Research design A qualitative design was chosen to explore subjective concepts of health. Data were collected by semi-structured interviews; content analysis was applied according to Mayring. Participants and research context Twenty-eight interviews were conducted with non-professionals and professionals in long-term home care arrangements in Northern Germany. Ethical considerations Ethics approval was obtained from the Institutional Review Board at the University Medicine Greifswald (BB123/16). Findings Non-professionals and professionals consider health as a capability that enables them to participate in social activities and live their own lives according to their preferences. The former regard health particularly as a feeling and an attitude, the latter as the absence of disease with a focus on mental and emotional well-being. Both groups highlight the unsurpassable value of health and the personal responsibility for it. Discussion Normative guidelines applicable to practice in long-term home care discuss responsibilities and rights unevenly and raise several problems regarding non-professionals and professionals’ subjective concepts of health. Conclusion Individuals’ concepts of health are relevant for the subsequent interpretation of rights and responsibilities and should, thus, be reflected upon to address health-related needs effectively. (shrink)

The glaring lack of formal and informal caregivers in Germany has not only become apparent in hospitals and nursing homes but also in home care arrangements. One tension is particularly pertinent in such arrangements: a ‘family-oriented’ logic of the long-term care insurance and the individual wishes of those in need of care meet the actual possibilities of family carers. This care gap has been compensated for by 24-hour care workers, so-called ‘live-ins’, from Eastern Europe for some years. This contribution maps (...) the ‘live-ins’ situation comprehensively from an ethical perspective. Based on different constellations regarding the ‘live-ins’ status as a professional nurse or non-professional caregiver, which ethical principles and moral norms are affected by whom and potentially conflict with each other in such home care arrangements at a micro and meso level of care are outlined. Special attention is paid to the tension between self-care and care for others, and to questions of the shared responsibility in and social responsibility of those external services that are involved in home care in addition to the ‘live-in’. In order to uncover, understand and influence the current ethical problems, an ethical framework that considers both the divergent interests of all individuals involved in the home care arrangement and their mutual dependency and vulnerability is needed. (shrink)

The decision-making environment in intensive care units (ICUs) is influenced by the transformation of intensive care medicine, the staffing situation and the increasing importance of patient autonomy. Normative implications of time in intensive care, which affect all three areas, have so far barely been considered. The study explores patterns of decision making concerning the continuation, withdrawal and withholding of therapies in intensive care. A triangulation of qualitative data collection methods was chosen. Data were collected through non-participant observation on a surgical (...) ICU at an academic medical centre followed by semi-structured interviews with nurses and physicians. The transcribed interviews and observation notes were coded and analysed using qualitative content analysis according to Mayring. Three themes related to time emerged regarding the escalation or de-escalation of therapies: influence of time on prognosis, time as a scarce resource and timing in regards to decision making. The study also reveals the ambivalence of time as a norm for decision making. The challenge of dealing with time-related efforts in ICU care results from the tension between the need to wait to optimise patient care, which must be balanced against the significant time pressure which is characteristic of the ICU setting. (shrink)

Volume 20, Issue 6, June 2020, Page 80-82.

Definition of the problem Interprofessional learning of nursing trainees and medical students offers numerous opportunities for future cooperation aiming to provide high-quality care for patients. Arguments Expert panels, therefore, demand early integration of interprofessional teaching and learning structures in order to be able to achieve effective and sustainable improvements in practice. In Germany, interprofessional learning formats are increasingly used in undergraduate education of the two professions in selected—compulsory and optional—themes and courses. Conclusion So far, the field of health care ethics (...) has scarcely been taken into consideration. The article examines the situation of interprofessional ethics teaching in Germany and highlights its opportunities and limitations against the background of a pilot project. (shrink)

Zusammenfassung Migrantische Pflege- und Betreuungskräfte, die zusammen mit pflegebedürftigen Menschen in ihren Haushalten leben (sog. migrantische Live-Ins), sind eine tragende Säule der ambulanten Langzeitpflege in zahlreichen Ländern – so auch in Deutschland. Zur Arbeits- und Lebenssituation der Live-Ins liegen inzwischen zahlreiche empirische Untersuchungen vor, die damit einhergehende Problemlagen offenbaren. Ein Schlüsselelement der Live-In Arrangements, nämlich die Beziehungen zwischen den Involvierten, wurde bislang jedoch aus ethischer Perspektive noch nicht systematisch untersucht. Aufbauend auf sozio-empirischen Arbeiten, die die Bedeutung von „Care-Networks“ dargelegt haben, (...) gehen wir von der Annahme aus, dass Live-Ins auf verschiedenen Ebenen in ein Netz von Beziehungen eingebettet sind, die für ihre Arbeits- und Lebenssituation wesentlich sind. Mit Hilfe der vier Care-Phasen Joan Trontos werden in diesem Beitrag bestehende Abhängigkeiten beschrieben und anhand der korrespondierenden vier ethischen Dimensionen reflektiert. Zentral sind die Fragen, wie sich die Abhängigkeiten im Live-In Arrangement auf der Basis des bisherigen Korpus empirischer Studien charakterisieren lassen und wie die Beziehungsstrukturen mit Fokus auf die Elemente Macht, Abhängigkeit und Vertrauen in der Care-ethischen Reflexion eingeordnet werden können. Auf der Basis dieser Analyse zeigt sich, dass die aus der Gleichzeitigkeit verschiedener Formen von Asymmetrie und gegenseitiger Abhängigkeit resultierende Ambivalenz in Live-In Arrangements allgegenwärtig ist und scheinbar widersprüchliche Beziehungsformen und Emotionen entstehen lässt. Die Verantwortlichkeiten der Beteiligten füreinander sind vage und werden auf der Grundlage impliziter Annahmen und problematischer Rollenerwartungen ständig neu ausgehandelt und auch ohne Aushandlung zugewiesen. Es gilt künftig, nicht nur auf der Mikroebene des einzelnen häuslichen Pflegearrangements Verantwortlichkeiten aus den unterschiedlichen Positionen und Rollen heraus und mit Blick auf die changierenden Prozesse der Sorgebeziehungen besser zu verstehen und zu klären, sondern sich ebenfalls auf der Meso- und Makroebene – bereichert durch Care-ethische Perspektiven – den drängenden ethischen Fragen und Problemen in Live-In Arrangements zu stellen. (shrink)

Zusammenfassung Ausgehend von den Erfahrungswerten sechs Klinischer Ethiker*innen an Universitätsklinika in Deutschland wurde eine strukturierte Auseinandersetzung mit dem Arbeitsfeld der Fortbildungen im Rahmen der Klinischen Ethikarbeit vorgenommen. Die Zusammenarbeit wurde von der Fragestellung geleitet, was bei der Konzeption einer Ethik-Fortbildung innerhalb einer Einrichtung zu berücksichtigen ist. Der methodische Zugang zur Beantwortung der explorativen Fragestellung bestand in einem mehrstufigen, deskriptiven Verfahren, das alternierend in gemeinsamen Arbeitssitzungen und individueller Arbeit zwischen den Sitzungen umgesetzt wurde. Als Resultat zeigt der Aufsatz eine Übersicht über (...) die Bandbreite möglicher Fortbildungsformate auf, die denjenigen Hilfestellung bieten kann, die in ihrer Einrichtung Fortbildungen zu ethischen Themen konzipieren und durchführen wollen. Darüber hinaus bietet er einen Überblick über die bei der Umsetzung jeweils zu berücksichtigenden _direkt strukturierenden_ sowie _indirekt strukturierenden_ Merkmale. Es wird an Beispielen aufgezeigt, welche Formatvarianten sich in Kombination mit welchen direkt strukturierenden Merkmalen in den ausgewählten Universitätsklinika bewährt haben. Der Beitrag liefert eine Diskussionsgrundlage, um die strukturierte Auseinandersetzung mit konzeptionellen Fragen ethischer Fortbildung in der Klinik zu befördern. (shrink)

Background Migrant live-in care workers are a main pillar of long-term care in many countries, including Germany. Several studies examining their working and living conditions reveal serious problems. However, a key element of live-in arrangements, namely the relationship between the individuals involved, has not yet been systematically investigated from an ethical perspective. Aim Building on previous socioempirical work that explored and set out the meaning of “care networks”, we start from the premise that live-ins are embedded in a network of (...) relationships which are essential for their employment and living situation. Methods The theoretical analysis draws on a network approach that takes care–ethical considerations into account. Using Joan Tronto’s four care–ethical phases, existing dependencies are described and reflected upon using the corresponding four care–ethical dimensions. The central questions are how dependencies in the live-in arrangement can be characterised based on the existing body of empirical studies and with a focus on the elements of power, dependency and trust in the ethical reflection on care. Results Based on this analysis, it becomes apparent that the ambivalence resulting from the simultaneity of different forms of asymmetry and mutual dependence is omnipresent in live-in arrangements and gives rise to seemingly contradictory forms of relationships and emotions. Responsibilities are vague and are constantly renegotiated on the basis of implicit assumptions and problematic role expectations and are also assigned without negotiation. Conclusions In the future, it will not only be necessary to better understand and clarify responsibilities at the micro level of the individual care arrangement from the various positions and roles and with a view to the changing processes of caring for another, but also to address the pressing ethical questions and problems in live-in arrangements at the meso and macro levels—enriched by care–ethical perspectives. (shrink)

Background: Nosocomial infections represent a serious challenge for healthcare systems worldwide. Adherence to hand hygiene plays a major role in infection prevention and control. These adherence rates can be improved through behaviour tracking innovations. This requires the systems to be widely implemented and accepted. Therefore, both a systematic analysis of the normative issues related and the evaluation of technology acceptance are equally important. Objectives: To explore and describe relevant aspects regarding the acceptance of technology and ethical implications using a tracking (...) device to measure and improve adherence to hand hygiene. Research design: A quantitative study with a descriptive design was performed. Participants and research context: A total of 75 questionnaires were collected in three hospitals in Germany. Acceptance of technology was measured with n = 60 participants (n = 50 nurses; n = 9 physicians; n = 1 not disclosed) and ethical assessment with n = 15 participants (nurses only). Ethical considerations: Ethical approval for this study was obtained from the institutional review board. Findings: The acceptance of technologies improving hygiene in general was good (median = 80.5, interquartile range = 28, range: 0–100). The experience with technologies in general (median = 48.5, interquartile range = 57, range: 0–100) and the acceptance of the specific technology (mean = 82.23, standard deviation = 15.16 (range: 23–138)) was moderate. There was a significant positive correlation between the acceptance and experience of technology in general ( r = 0.217, p =.025). Ethical concerns played a minor role. The need for practical support was a key topic. Discussion: Study participants accepted technologies improving hygiene; however, the specific device implemented was only moderately accepted. This creates specific opportunities in the implementation process for higher later acceptance. More practical support and an increase in experience may create opportunities for device implementation with high acceptance and low ethical concerns. Conclusion: Study results indicate a vast potential for improving the implementation process of hand hygiene technologies. Ethical concerns in this study did not seem to be a relevant barrier for successful implementation of hand hygiene technologies. (shrink)

Definition of the problem The COVID-19 pandemic poses a considerable challenge to the capacity and functionality of intensive care. This concerns not only resources but, above all, the physical and psychological boundaries of nursing professionals. The question of how care for others and self-care of nurses in intensive care units are related to each other in the context of the COVID-19 pandemic has not been addressed in public and scientific discourse so far. Arguments The present contribution reflects this relationship with (...) reference to the Code of Ethics of the International Council of Nurses, particularly considering principlism and the Care Ethics according to Joan Tronto. As a result, it shows a corridor of ethically justifiable care with several borders, above all: self-care must not be given up completely for the benefit of care for others, and a categorical subordination of care for others to self-care is ethically not justifiable. Conclusion The article makes an important contribution to a differentiated ethical consideration of the rights and responsibilities of intensive care nurses as moral actors within the pandemic in Germany. It, thus, provides a first starting point for a broad social and political discourse which is urgently needed not only during but also after the pandemic in order to improve the situation of intensive care nurses and those who are cared for. (shrink)