Ethical concerns in caring for persons with anorexia nervosa: content analysis of a series of documentations from ethics consultations.

BACKGROUND: Caring for patients with anorexia nervosa (AN) is associated with high levels of moral distress among healthcare professionals. The main moral conflict has been posited to be between applying coercion to prevent serious complications such as premature death and accepting treatment refusals. However, empirical evidence on this topic is scarce. METHODS: We identified all 19 documentations of ethics consultations (ECs) in the context of AN from one clinical ethics support service in Switzerland. These documentations were coded with a sequential deductive-inductive approach and the code system was interpreted in a case-based manner. Here, we present findings on patient characteristics and ethical concerns. FINDINGS: The ECs typically concerned an intensely pretreated, extremely underweight AN patient endangering herself by refusing the proposed treatment. In addition to the justifiability of coercion, frequent ethical concerns were whether further coerced treatment aimed at weight gain would be ineffective or even harmful, evidencing uncertainty about beneficence and non-maleficence and a conflict between these principles. Discussed options included harm reduction (e.g. psychotherapy without weight gain requirements) and palliation (e.g. initiating end-of-life care), the appropriateness of which were ethical concerns in themselves. Overall, nine different types of conflicts between or uncertainties regarding ethical principles were identified with a median of eight per case. CONCLUSIONS: Ethical concerns in caring for persons with AN are diverse and complex. To deal with uncertainty about and conflict between respect for autonomy, beneficence and non-maleficence, healthcare professionals consider non-curative approaches. However, currently, uncertainty around general justifiability, eligibility criteria, and concrete protocols hinders their adoption.

Healthcare access and health equity: intricate challenges for rare diseases.

No abstract available.

Women's experiences with non-invasive prenatal testing in Switzerland: a qualitative analysis.

BACKGROUND: Prenatal genetic testing, in particular non-invasive prenatal testing (NIPT), as well as screening for risks associated with pregnancy, and counseling, play pivotal roles in reproductive healthcare, offering valuable information about the health of the fetus to expectant parents. This study aims to delve into the perspectives and experiences of women considering genetic testing and screening during pregnancy, focusing on their decision-making processes and the implications for informed consent. METHODS: A nationwide qualitative study was conducted in Switzerland, involving in-depth interviews with women who were 1 to 2 years post-partum, covered by basic compulsory Swiss insurance, including women with a migration background. Thematic analysis was employed to identify key themes and patterns in the data. RESULTS: The findings underscore the significance of effective communication during prenatal counseling, suggesting that healthcare providers could not only convey technical information but also support women in their decision-making processes. Women need comprehensive information about genetic testing and its implications, as well as the reasons for screening during pregnancy, as there might be a need to bridge knowledge gaps and clarify misconceptions. Furthermore, the study highlights the multifaceted nature of decision-making, with women considering factors such as uncertainty, values, emotional responses, and societal support systems. The concept of acceptance emerged as a crucial theme, with some women expressing their readiness to love and accept their child, regardless of genetic anomalies or disabilities. CONCLUSION: This study offers valuable insights into the perspectives and needs of women regarding prenatal genetic testing, screening, and counseling in Switzerland. It underscores the importance of enhancing the clinical interaction and informed consent process by providing comprehensive information, addressing misconceptions, and supporting women in decision-making about pregnancy management and the management of the child's health, following prenatal genetic testing, including NIPT. These findings can inform healthcare providers and policymakers in improving the quality of prenatal counseling, ensuring informed consent, and supporting women in making well-informed and meaningful decisions about genetic testing, and on the use of screening during pregnancy.

Engineering Minds? Ethical Considerations on Biotechnological Approaches to Mental Health, Well-Being, and Human Flourishing.

Our bodies can be designed and modified in accordance with our ideals of health and well-being. These increasingly targeted and personalized interventions will be more effective than current therapies. Here we review technologies to alter mood, and explore the ethics of bioengineering approaches to mental health.

A CRISPR response to pandemics?: Exploring the ethics of genetically engineering the human immune system.

Ethical challenges should be addressed before gene editing is made available to improve the immune response against emerging viruses.

Freedom of research in a democratic society: Is there a contradiction between socially desirable science and freedom of research?

Freedom of research and democratization of science are often conflicting concepts in democratic societies. It is thus necessary to define when either applies.

"I need to know what makes somebody tick ": Challenges and Strategies of Implementing Shared Decision-Making in Individualized Oncology.

BACKGROUND: Shared decision-making (SDM) has been advocated as an ethical framework for decision-making in cancer care. According to SDM, patients make decisions in light of their values and based on the available evidence. However, SDM is difficult to implement in cancer care. A lack of applicability in practice is often reported. This empirical-ethical study explores factors potentially relevant to current difficulties in translating the concept of SDM into clinical practice. METHODS: This study was conducted with nonparticipant observation of the decision-making process in patients with gastrointestinal cancers for whom the benefit of adjuvant chemotherapy was uncertain according to clinical guidelines. Triangulation of qualitative data analysis was conducted by means of semistructured interviews subsequent to the observation. Observation notes and interview transcripts were analyzed according to the principles of grounded theory. RESULTS: Deviating from the concept of SDM, oncologists initiated a process of eliciting values and medical information prior to conveying information. The purpose of this approach was to select and individualize information relevant to the treatment decision. In doing so, the oncologists observed used two strategies: "biographical communication" and a "metacommunicative approach." Both strategies could be shown to be effective or to fail depending on patients' characteristics such as their view of the physicians' role and the relevance of value-related information for medical decision-making. CONCLUSION: In contrast to the conceptual account of SDM, oncologists are in need of patient-related information prior to conveying information. Both strategies observed to elicit such information are in principle justifiable but need to be adapted in accordance with patient preferences and decision-making styles. IMPLICATIONS FOR PRACTICE: This study showed that knowledge of patients' values and preferences is very important to properly adapt the giving of medical information and to further the process of shared decision-making. Shared decision-making (SDM) trainings should consider different strategies of talking about values. The right strategy depends largely on the patient's preferences in communication. To be aware of the role of values in SDM and to be able to switch communicative strategies might prove to be of particular value. A more systematic evaluation of the patient's decision-making preferences as part of routine procedures in hospitals might help to reduce value-related barriers in communication.

Methodological Reflections on the Contribution of Qualitative Research to the Evaluation of Clinical Ethics Support Services.

This article describes a process of developing, implementing and evaluating a clinical ethics support service intervention with the goal of building up a context-sensitive structure of minimal clinical-ethics in an oncology department without prior clinical ethics structure. Scholars from different disciplines have called for an improvement in the evaluation of clinical ethics support services (CESS) for different reasons over several decades. However, while a lot has been said about the concepts and methodological challenges of evaluating CESS up to the present time, relatively few empirical studies have been carried out. The aim of this article is twofold. On the one hand, it describes a process of development, modifying and evaluating a CESS intervention as part of the ETHICO research project, using the approach of qualitative-formative evaluation. On the other hand, it provides a methodological analysis which specifies the contribution of qualitative empirical methods to the (formative) evaluation of CESS. We conclude with a consideration of the strengths and limitations of qualitative evaluation research with regards to the evaluation and development of context sensitive CESS. We further discuss our own approach in contrast to rather traditional consult or committee models.

The normative background of empirical-ethical research: first steps towards a transparent and reasoned approach in the selection of an ethical theory.

BACKGROUND: Empirical-ethical research constitutes a relatively new field which integrates socio-empirical research and normative analysis. As direct inferences from descriptive data to normative conclusions are problematic, an ethical framework is needed to determine the relevance of the empirical data for normative argument. While issues of normative-empirical collaboration and questions of empirical methodology have been widely discussed in the literature, the normative methodology of empirical-ethical research has seldom been addressed. Based on our own research experience, we discuss one aspect of this normative methodology, namely the selection of an ethical theory serving as a background for empirical-ethical research. DISCUSSION: Whereas criteria for a good ethical theory in philosophical ethics are usually related to inherent aspects, such as the theory's clarity or coherence, additional points have to be considered in the field of empirical-ethical research. Three of these additional criteria will be discussed in the article: (a) the adequacy of the ethical theory for the issue at stake, (b) the theory's suitability for the purposes and design of the empirical-ethical research project, and (c) the interrelation between the ethical theory selected and the theoretical backgrounds of the socio-empirical research. Using the example of our own study on the development of interventions which support clinical decision-making in oncology, we will show how the selection of an ethical theory as a normative background for empirical-ethical research can proceed. We will also discuss the limitations of the procedures chosen in our project. The article stresses that a systematic and reasoned approach towards theory selection in empirical-ethical research should be given priority rather than an accidental or implicit way of choosing the normative framework for one's own research. It furthermore shows that the overall design of an empirical-ethical study is a multi-faceted endeavor which has to balance between theoretical and pragmatic considerations.

Medical expertise and patient involvement: a multiperspective qualitative observation study of the patient's role in oncological decision making.

BACKGROUND: Decision making in oncology poses intricate ethical questions because treatment decisions should account not only for evidence-based standards but also for the patient's individual values and preferences. However, there is a scarcity of empirical knowledge about patient involvement in oncological decision making. METHODS: Direct, nonparticipant observation was used as a qualitative research method to gain an understanding of the interplay between medical expertise and patient participation in oncological decision making. Based on a multiperspective approach, observations were performed in three settings (tumor conference, ward round, and outpatient clinic) in the oncology department of a German university hospital. The observation transcripts were analyzed using central features of qualitative data analysis. RESULTS: Major differences were identified regarding the decision-making processes in the three settings related to the patient's presence or absence. When the patient was absent, his or her wishes were cited only irregularly; however, patients actively advanced their wishes when present. Preselection of treatments by physicians was observed, narrowing the scope of options that were finally discussed with the patient. Dealing with decisions about risky treatments was especially regarded as part of the physician's professional expertise. CONCLUSION: The study reveals aspects of decision making for cancer patients that have been underexposed in the empirical and theoretical literature so far. Among these are the relevance of structural aspects for the decisions made and the practice of preselection of treatment options. It should be further discussed how far medical expertise reaches and whether therapeutic decisions can be made without consulting the patient.