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Background: To deliver appropriate support to patients and their families, it is central to know the needs of those affected by a disease. As a chronic disease, Hereditary Chronic Pancreatitis (HCP) usually accompanies those affected for their lifetime and can lead to substantial psychological and social consequences for the individuals affected and their families. Since the subjective experience of individuals living with HCP has not yet been investigated, the current PhD thesis examines the ethical and social issues which arise in the context of HCP. Methods: To get a comprehensive overview of the ethical and social issues involved, different methods were combined. A qualitative study with patients and their relatives was conducted to acquire an understanding of living with HCP. Based on the issues identified, ethical and conceptual analyses and a systematic review were conducted to supplement the empirical findings. Results: Twenty-four individual interviews and one focus group were conducted. The participants described HCP as a continuous but unstable part of their lives. The ‘shifting perspectives model’ by Paterson covers this experience adequately, but due to the shifting character of HCP, the participants reported pathologization as a problematical issue in their lives. Additionally, the study demonstrates that genetic testing has a wide influence in familial contexts and is accompanied by normative issues, e.g. related to reproductive decisions. The study revealed the broad range of ethical and social issues that those affected by HCP face. In this context, patient advocacy organizations (PAOs) are seen as an important source of support by patients and their families. Discussion: Given the various tasks ascribed to PAOs, it is unclear what roles PAOs have and what responsibilities they bear. Although the conceptual analysis and the systematic review provided an orientation about PAOs’ responsibility, no general answer can be given. Instead, each PAO and its specific situation must be evaluated individually. Responsibility as a relational concept can help to structure these situations and to understand the role of PAOs in the healthcare sector and in current bioethical debates better. Conclusion: The thesis provides empirical and conceptual findings on the ethical and social issues in the context of a rare, genetically determined, chronic disease. It is important to recognize these three dimensions and their interplay to deliver optimal care to those affected. The results build a comprehensive starting point for healthcare professionals managing genetically determined, chronic diseases, but more research is needed to bring the results of this thesis into practice.

Abstract Background A growing proportion of older people in Germany receive long‐term care from informal and professional caregivers at home. Their personal assessment of the individual care situation is scarcely considered. Aim This study aimed to explore the subjective views of care recipients, informal and professional caregivers on the adequacy of care provision in long‐term home care arrangements. Design and Methods Qualitative semi‐structured face‐to‐face interviews were conducted with ten care recipients, ten professional caregivers and eight informal caregivers to capture their perspectives on the adequacy of the care received and delivered. Qualitative content analysis was applied using MAXQDA software. Results All groups highlighted that they perceive an underprovision of care, even though their explanations differed. The underprovision was mainly described regarding the quality rather than quantity of services. It occurs especially in interpersonal relationships and social inclusion, where the gap between the self‐perceived current situation and the desires of those affected is most prominent. The ambivalent impact of home care on social participation becomes apparent. Perceptions of an overprovision of care range from the view that it appears mainly with respect to informal care to the statement that it is currently non‐existent or generally impossible. Misprovision of care is experienced as serious whenever the interviewees face the challenge of preserving existing abilities or regaining certain skills.

Medical doctors sometimes make diagnoses in persons who are not their patients and who did not ask for their medical opinion, e.g., when an off-duty dermatologist diagnoses melanoma in a stranger, outside of the hospital setting. These diagnoses are referred to as unsolicited medical opinions. The unsolicited medical opinion raises several ethical questions. Most importantly, it poses a moral challenge for the physician: a possible disease, which may lead to a serious loss of health, is recognised in a person who is not the physician’s patient, outside of the formal medical context. The fundamental ethical question addressed in this dissertation is: Does a medical doctor who makes a clinical diagnosis in a stranger, outside of the formal medical context, have an ethical obligation to offer an unsolicited medical opinion? This ethical question involves some related questions: If physicians do have an ethical obligation to offer an unsolicited medical opinion, are there any limiting factors to this obligation, which would justify not acting? A more practical question is also raised: How should a physician approach the person in whom an unsolicited diagnosis is made? The cumulative dissertation is based on three publications addressing the unsolicited medical opinion. Firstly, the unsolicited medical opinion is explored from the perspective of utilitarianism, and a utilitarian argument is made in favour of offering an unsolicited medical opinion. Secondly, the topic is placed in the context of the existing scientific literature and analysed from the perspective of several ethical theories: virtue ethics, care ethics, principlism and contract theory. Lastly, the unsolicited medical opinion is discussed in the context of “medically unknown symptoms”. As in the central argument of this thesis, a utilitarian principle is applied and an argument made in favour of an unsolicited mental health diagnosis.

Die vorliegende Dissertation beschäftigt sich mit dem individuell erlebten beruflich-pflegerischen Alltag von Angestellten in der Geburtshilfe der DDR. Mithilfe von Zeitzeugeninterviews gewonnene Erkenntnisse werden mittels Literaturforschung objektivierbaren Informationen über den damaligen beruflichen Alltag gegenübergestellt. Es erfolgt ein Vergleich mit der gegenwärtigen Situation anhand von aktuellen Publikationen. Es wurden Interviews mit elf Angestellten der ehemaligen DDR-Geburtshilfe geführt, von denen ein Großteil sowohl das Gesundheitswesen der DDR, als auch das des wiedervereinigten Deutschlands erlebt hat und differenziert bewerten kann. Schwerpunkte lagen im Bereich des Arbeitsalltags (Hierarchie, politische Einflussnahme, Arbeitszufriedenheit, ökonomische und personelle Engpässe). Auf der anderen Seite interessierten wir uns für Teilgebiete des staatlichen Gesundheitswesens, wie politische Maßnahmen zum Gesundheitsschutz von Mutter und Kind, medizinische Betreuung während der Schwangerschaft, Problematik der künstlichen Schwangerschaftsunterbrechung, das Rollenverständnis der Frau in der sozialistischen Gesellschaft, Umgang mit Risikogeburten, Daten zur Mütter- und Säuglingssterblichkeit. Im Rahmen der Auswertung sollte berücksichtigt werden, dass eine Sozialisierung in unterschiedlichen politischen Systemen wie der DDR und der Bundesrepublik zur Entwicklung unterschiedlicher Werthaltungen führen und Einfluss auf die individuellen Ansprüche haben kann. Wir konnten zeigen, dass die Arbeitszufriedenheit durch verschiedene ideelle Werte positiv beeinflusst wird. Sie gilt als eine der wichtigsten Einflussgrößen auf die Arbeitsleistung und war unter den befragten Frauen früher deutlich höher als gegenwärtig. Als Ursachen für eine aktuell abnehmende Arbeitszufriedenheit konnten zunehmende berufsfremde Tätigkeiten und Subspezialisierungen, Personalmangel, weniger freundschaftliche Beziehungen im Berufsalltag, die Angst vor Arbeitslosigkeit und Degradierung der Krankenschwester zur Dienstleisterin erkannt werden. Ideen zur Verbesserung der Arbeitszufriedenheit, teils in Anlehnung an die damaligen Arbeitsstrukturen, werden erläutert. Außerdem konnten wir zeigen, dass sich der Umgang mit der operativen Geburtshilfe und dem Schwangerschaftsabbruch verändert hat. Der Umgang mit Frühgeburtlichkeit stellt sich sowohl in der DDR, als auch gegenwärtig problematisch dar. Weiterhin zeigte sich, dass die in der DDR sozialisierten Frauen heute einen liberaleren und toleranteren Umgang hinsichtlich des Schwangerschaftsabbruchs pflegen, als die in den alten Bundesländern sozialisierten.