Attitudes and values towards decisions at the margin of viability among expectant mothers at risk for preterm birth.

AIM: To explore how expectant mothers at risk for preterm birth would like to be involved in decision-making at the margin of viability and what they would base their decisions on. METHODS: This cross-sectional observational study included a mixed-methods post-hoc analysis alongside a previously reported randomised clinical trial. Expectant mothers between 280/7 and 366/7 weeks' gestation who were hospitalised for risk of preterm birth responded to written case vignettes of an impending preterm birth at the margin of viability. Participants responded to closed and open-ended questions that were theoretically coded for attitudes and values towards shared decision-making. RESULTS: Sixty-four expectant mothers were included in the analysis, 36 provided written perspectives. Decision-making was perceived as an enormous burden and a potential source of guilt and regret. Weighing personal values in terms of 'fighting for the baby' and 'quality of life' were used to inform the decision-making process. Explicitly stating that any decision is a good decision, empowerment through co-constructing shared decisions rather than simply presenting choices, sharing the clinicians' personal views, and honest, and empathetic counselling were perceived as supportive. CONCLUSION: Mothers at risk for preterm birth provided specific insights into their decision-making patterns that may be helpful to clinicians.

Single-rater reliability of a three-dimensional instrument for decision-making in tertiary triage and ICU- prioritization-a case vignette simulation study.

Disconcerting reports from different EU countries during the first wave of the COVID-19 pandemic demonstrated the demand for supporting decision instruments and recommendations in case tertiary triage is needed. COVID-19 patients mainly present sequentially, not parallelly, and therefore ex-post triage scenarios were expected to be more likely than ex-ante ones. Decision-makers in these scenarios may be highly susceptible to second victim and moral injury effects, so that reliable and ethically justifiable algorithms would have been needed in case of overwhelming critical cases.To gather basic information about a potential tertiary triage instrument, we designed a three-dimensional instrument developed by an expert group using the Delphi technique. The instrument focused on three parameters: 1) estimated chance of survival, 2) estimated prognosis of regaining autonomy after treatment, and 3) estimated length of stay in the ICU. To validate and test the instrument, we conducted an anonymous online survey in 5 German hospitals addressing physicians that would have been in charge of decision-making in the case of a mass infection incident. Of about 80 physicians addressed, 47 responded. They were presented with 16 fictional ICU case vignettes (including 3 doublets) which they had to score using the three parameters of the instrument.We detected a good construct validity (Cronbach's Alpha 0.735) and intra-reliability (p < 0.001, Cohens Kappa 0.497 to 0.574), but a low inter-reliability (p < 0.001, Cohen's Kappa 0.252 to 0.327) for the three parameters. The best inter-reliability was detected for the estimated length of stay in the ICU. Further analysis revealed concerns in assessing the prognosis of the potentially remaining autonomy, especially in patients with only physical impairment.In accordance with German recommendations, we concluded that single-rater triage (which might happen in stressful and highly resource-limited situations) should be avoided to ensure patient and health care provider safety. Future work should concentrate on reliable and valid group decision instruments and algorithms and question whether the chance of survival as a single triage parameter should be complemented with other parameters, such as the estimated length of stay in the ICU.

How to derive ethically appropriate recommendations for action? A methodology for applied ethics.

Researchers in applied ethics, and some areas of bioethics particularly, aim to develop concrete and appropriate recommendations for action in morally relevant real-world situations. When proceeding from more abstract levels of ethical reasoning to such concrete recommendations, however, even with regard to the very same normative principle or norm, it seems possible to develop divergent or even contradictory recommendations for action regarding a certain situation. This may give the impression that such recommendations would be arbitrary and, hence, not well justified. Against this background, we, first, aim at showing that ethical recommendations for action, although being contingent in some sense, are not arbitrary if developed appropriately. For this purpose, we examine two types of contingencies arising in applied ethics reasoning based on recent examples of recommendations for action in the context of the COVID-19 pandemic. In doing so, we refer to a three-step model of ethical reasoning towards recommendations for actions. This, however, leaves open the question of how applied ethics may cope with contingent recommendations for action. Therefore, in a second step, we analyze the role of bridge principles for developing ethically appropriate recommendations for action, i.e., principles which connect normative claims with relevant empirical information to justify certain recommendations for action in a given morally relevant situation. Finally, we discuss some implications for reasoning and reporting in empirically informed ethics.

Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.

"What the patient wants ": Lay attitudes towards end-of-life decisions in Germany and Israel.

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople (religious, secular, affected, and non-affected) were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both countries, respect for patient autonomy and patients' wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient's wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture.

Impact of gender and professional education on attitudes towards financial incentives for organ donation: results of a survey among 755 students of medicine and economics in Germany.

BACKGROUND: There is an ongoing expert debate with regard to financial incentives in order to increase organ supply. However, there is a lacuna of empirical studies on whether citizens would actually support financial incentives for organ donation. METHODS: Between October 2008 and February 2009 a quantitative survey was conducted among German students of medicine and economics to gain insights into their point of view regarding living and deceased organ donation and different forms of commercialization (n = 755). RESULTS: The average (passive) willingness to donate is 63.5% among medical students and 50.0% among students of economics (p = 0.001), while only 24.1% of the respondents were actually holding an organ donor card. 11.3% of students of economics had signed a donor card, however, the number is significantly higher among students of medicine (31.9%, p < 0.001). Women held donor cards significantly more often (28.6%) than men (19.4%, p = 0.004). The majority of students were against direct payments as incentives for deceased and living donations. Nevertheless, 37.5% of the respondents support the idea that the funeral expenses of deceased organ donors should be covered. Women voted significantly less often for the coverage of expenses than men (women 31.6%, men 44.0%, p = 0.003). The number of those in favor of allowing to sell one's organs for money (living organ donation) was highest among students of economics (p = 0.034). CONCLUSION: Despite a generally positive view on organ donation the respondents refuse to consent to commercialization, but are in favor of removing disincentives or are in favor of indirect models of reward.

Research across the disciplines: a road map for quality criteria in empirical ethics research.

BACKGROUND: Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. DISCUSSION: While empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria--a "road map"--tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos. SUMMARY: EE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined.

Interprofessional perceptions of emotional, social, and ethical effects of multidrug-resistant organisms: A qualitative study.

INTRODUCTION: Multi-drug-resistant organisms (MDRO) are usually managed by separating the infected patients to protect others from colonization and infection. Isolation precautions are associated with negative experiences by patients and their relatives, while hospital staff experience a heavier workload and their own emotional reactions. METHODS: In 2018, 35 participants (nurses, physicians, pharmacists) in an antimicrobial-stewardship program participated in facilitated discussion groups working on the emotional impact of MDRO. Deductive codings were done by four coders focusing on the five basic emotions described by Paul Ekmans. RESULTS: All five emotions revealed four to 11 codes forming several subthemes: Anger is expressed because of incompetence, workflow-impairment and lack of knowledge. Anxiety is provoked by inadequate knowledge, guilt, isolation, bad prognoses, and media-related effects. Enjoyment is seldom. Sadness is experienced in terms of helplessness and second-victim effects. Disgust is attributed to shame and bad associations, but on the other hand MDROs seem to be part of everyday life. Deductive coding yielded additional codes for bioethics and the Calgary Family Assessment Method. CONCLUSION: MDRO are perceived to have severe impact on emotions and may affect bioethical and family psychological issues. Thus, further work should concentrate on these findings to generate a holistic view of MDRO on human life and social systems.

[Wishes and perspectives of patients in the establishment of advance directives. Results on a study on patients' perspective in Austria]. / Wünsche und Befürchtungen von Patienten bei der Errichtung von Patientenverfügungen. Ergebnisse einer Studie zum Patientenverfügungsgesetz in Osterreich.

Patients use the Austrian law on living wills in different ways to deal with questions of discontinuation of treatment. Qualitative research shows that patients take their experiences with the medical system as well as their social situation into account and try to use the living will to continue communication in a situation when they cannot express themselves any more.