Institut für Ethik und Geschichte der Medizin
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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.
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.
Ethics of Genetically Determined Chronic Diseases – Hereditary Chronic Pancreatitis as an Example
(2022)
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.
Genetic testing is associated with many ethical challenges on the individual, organizational and macro level of health care systems. The provision of genetic testing for rare diseases in particular requires a full understanding of the complexity and multiplicity of related ethical aspects. This systematic review presents a detailed overview of ethical aspects relevant to genetic testing for rare diseases as discussed in the literature. The electronic databases Pubmed, Science Direct and Web of Science were searched, resulting in 55 relevant publications. From the latter, a total of 93 different ethical aspects were identified. These ethical aspects were structured into three main categories (process of testing, consequences of the test outcome and contextual challenges) and 20 subcategories highlighting the diversity and complexity of ethical aspects relevant to genetic testing for rare diseases. This review can serve as a starting point for the further in-depth investigation of particular ethical issues, the education of healthcare professionals regarding this matter and for informing international policy development on genetic testing for rare diseases.
Background
Both vulnerability and integrity represent action-guiding concepts in nursing practice. However, they are primarily discussed regarding patients—not nurses—and considered independently from rather than in relation to each other.
Aim
The aim of this paper is to characterize the moral dimension of nurses' vulnerability and integrity, specify the concepts' relationship in nurses' clinical practice and, ultimately, allow a more fine-grained understanding.
Design
This discursive paper demonstrates how vulnerability and integrity relate to each other in nursing practice and carves out which types of vulnerability pose a threat to nurses' moral integrity. The concept of vulnerability developed by Mackenzie et al. (2014) is applied to the situation of nurses and expanded to include the concept of moral integrity according to Hardingham (2004). Four scenarios are used to demonstrate where and how nurses' vulnerabilities become particularly apparent in clinical practice. This leads to a cross-case discussion, in which the vulnerabilities identified are examined against the background of moral integrity and the relationship between the two concepts is determined in more detail.
Results and Conclusion
Vulnerability and integrity do not only form a conceptual pair but also represent complementary moral concepts. Their joint consideration has both a theoretical and practical added value. It is shown that only specific forms of vulnerability pose a threat to moral integrity and the vulnerability–integrity relationship is mediated via moral distress.
Implications for the Profession and/or Patient Care
The manuscript provides guidance on how the concrete threat(s) to integrity can be buffered and moral resilience can be promoted. Different types of threats also weigh differently and require specific approaches to assess and handle them at the micro-, meso- and macro-level of the healthcare system.