Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living (...) ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process. (shrink)

BackgroundClinical ethical practice (CEP) is required for healthcare workers (HCWs) to improve health-care delivery. However, there are gaps between accepted ethical standards and CEP in Ethiopia. There have been limited studies conducted on CEP in the country. Therefore, this study aimed to determine the magnitude and associated factors of CEP among healthcare workers in healthcare facilities in Ethiopia.MethodFrom February to April 2021, a mixed-method study was conducted in 24 health facilities, combining quantitative and qualitative methods. Quantitative (survey questionnaire) and qualitative (...) (semi-structured interviews) data were collected. For quantitative and qualitative data analysis, Stata version 14 and Atlas.ti version 7 were utilized. Multiple logistic regression and thematic analysis for quantative and qualitative respectively used.ResultsFrom a total of 432 study participants, 407 HCWs were involved in the quantitative analysis, 36 participants were involved in five focus group discussions (FGDs), and eleven key informant interviews (KIIs) were involved in the qualitative analysis. The score of good CEP was 32.68%. Similarly, the scores of good knowledge and attitude were 33.50% and 25.31%, respectively. In the multiple logistic regression models, satisfaction with the current profession, availability of functional CECs, compassionate leaders, previously thought clinical ethics in pre-service education and good attitude were significant factors associated with CEP. Among these significant factors, knowledge, compassionate leaders, poor infrastructure, a conducive environment and positive attitudes were also determinants of CEP according to qualitative findings.ConclusionsThe CEP in health care services in Ethiopia is low. Satisfaction with the current profession, functional CECs, positive attitude, compassionate leaders and previously thought clinical ethics were significant factors associated with CEP. The Ministry of Health (MoH) should integrate interventions by considering CECs, compassionate leadership, and positive attitudes and enhance the knowledge of health professionals. Additionally, digitalization, intersectoral collaboration and institutionalization are important for promoting CEP. (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)

In their contribution, Kok et al raise a relevant, though often underestimated, issue: clinical ethics support services are often assumed to lead to an improvement of quality of care at the organisational level, but evidence in support of this claim is weak, if not completely lacking.1 Therefore, the authors propose a complex theoretical model connecting a specific kind of CESS, moral case deliberation, with mechanisms for quality of care improvement at the individual and the organisational level. The proposal is original, (...) and the topic discussed of great interest not only to practitioners and researchers dealing with CESS, but also to health policy-makers and managers of healthcare system, for all of whom it is indeed crucial to understand whether and how ethics support can positively impact quality of care. However, despite its undoubtful merits, we feel that some claims and model’s underlying assumptions might require in-depth scrutiny and more solid justification. i. First, the authors discuss two different approaches to understanding quality of care: the first approach, which they define as reductionist, interprets quality as an outcome-oriented, quantitative, and therefore, measurable function. The second approach defines quality …. (shrink)

BackgroundClinical Ethics Support Services have been established to support healthcare professionals in addressing ethically sensitive issues in clinical practice and, in many countries, they are under development. In the context of growing CESS, exploring how healthcare professionals experience and address clinical ethics issues in their daily practice represents a fundamental step to understand their potential needs. This is even more relevant in the context of extremely sensitive diseases, such as cancer. On this basis, we carried out a qualitative study conducting (...) in-depth semi-structured interviews with stakeholders of a major comprehensive cancer centre in Italy, with the twofold aim of investigating what ethical issues arise in the context of clinical oncology and how they are addressed, as well as stakeholders’ expectations about a potential CESS to be implemented within the Institution.MethodsThe study was conducted within the theoretical framework of Grounded Theory. Participants were healthcare professionals and other key stakeholders working within the cancer centre. The semi-structured interview aimed at exploring common ethical aspects of oncology, investigating stakeholders’ professional experience in dealing with clinical ethics issues, their expectations and requests regarding ethics support services. Transcripts of the interviews were coded and analysed according to the principles of Grounded Theory.ResultsTwenty-one stakeholders were interviewed. Our analysis showed a wide consensus on the identification of ethically relevant issues, above all those concerning communication, end-of-life, and resource allocation. The absence of institutional tools or strategies to address and manage ethical issues at the patient bedside emerged, and this is reflected in the widespread request for their development in the future. The ideal support service should be fast and flexible in order to adapt to different needs and clinical cases.ConclusionsThe interviewees showed a limited degree of ‘ethical awareness’: despite having reported many issues in clinical practice, they could hardly identify and describe the ethical aspects, while complaining about a lack of ethical resources in their management. To build a truly effective support service, it therefore seems appropriate to take such context into consideration and address the emerged needs. Ethical sensitivity seems to be key and it becomes even more relevant in critical clinical areas, such as the therapeutic pathways of terminally ill patients. (shrink)

BackgroundThis study aims to quantitatively and qualitatively evaluate the activities of a Bioethics Unit (BU) 5 years since its implementation (2016–2020). The BU is a research unit providing empirical research on ethical issues related to clinical practice, clinical ethics consultation, and ethical education for health care professionals (HPS).MethodsWe performed an explanatory, sequential, mixed-method, observational study, using the subsequent qualitative data to explain the initial quantitative findings. Quantitative data were collected from an internal database and analyzed by descriptive analysis. Qualitative evaluation (...) was performed by semi-structured interviews with 18 HPs who were differently involved in the BU’s activities and analyzed by framework analysis.ResultsQuantitative results showed an extensive increment of the number of BU research projects over the years and the number of work collaborations with other units and wards. Qualitative findings revealed four main themes, concerning: 1. the reasons for contacting the BU and the type of collaboration; 2. the role of the bioethicist; 3. the impact of BU activities on HPs, in terms of developing deeper and more mature thinking; 4. the need to extend ethics support to other settings. Overall, our results showed that performing both empirical bioethics research and more traditional clinical ethics activities at the same unit would produce an impetus to increase collaboration and spread an 'ethical culture' among local HPs.ConclusionsOur findings contribute to a growing body of literature on the models of clinical ethics support services and the role of empirical research in bioethics internationally. They also prepare the ground for the implementation of a multidisciplinary Clinical Ethics Committee (CEC) that aims to support the BU’s ethics consultation service within the local context. (shrink)

The increasing age of the patient population around the globe and in the United States has resulted in a growing number of patients with dementia. In this manuscript, we examined the role of the ethics consultation service in patients who have dementia and associated cognitive and neuropsychiatric sequelae. We addressed a particularly challenging case presenting with behavioral and psychological symptoms of dementia. We discussed the ethical questions and challenges considered by the ethics consultation service and compared these with current suggestions (...) and expectations from the research literature regarding the role of ethics consultation service in dementia management. We demonstrated two potentially useful approaches of clinical ethical analysis, the principalist theorem and Jonsen's four quadrants approach. While the number of consults in patients with behavioral and psychological symptoms of dementia is likely to increase in clinical ethics, the role of the ethics consultation service in this cohort of patients still remains to be determined. There are significant gaps in understanding of the ethics consultation service role in dementia management, and much work remains to be undertaken on the part of regulatory and healthcare systems in clarifying their roles, expectations, and competencies. (shrink)

There is a claim that clinical ethics support services (CESS) improve healthcare quality within healthcare organisations. However, there is lack of strong evidence supporting this claim. Rather, the current focus is on the quality of CESS themselves or on individual learning outcomes. In response, this article proposes a theoretical framework leading to empirical hypotheses that describe the relationship between a specific type of CESS, moral case deliberation and the quality of care at the organisational level. We combine insights from the (...) literature on CESS, organisational learning and quality improvement and argue that moral case deliberation causes healthcare professionals to acquire practical wisdom. At the organisational level, where improving quality is a continuous and collective endeavour, this practical wisdom can be aggregated into morisprudence, which is an ongoing formulation of moral judgements across cases encountered within the organisation. Focusing on the development of morisprudence enables refined scrutinisation of CESS-related quality claims. (shrink)

BackgroundImportance of awareness of medical ethics and its integration into medical curriculum has been frequently highlighted. Study 1 aimed to assess the knowledge, attitude, and reported practices of medical ethics among clinicians at Patan Academy of Health Sciences, a tertiary care teaching hospital in Nepal. Study 2 was conducted to assess whether there was a difference in knowledge, attitude, and reported practices of medical ethics among doctors who received formal medical ethics education during undergraduate studies and those who did not.MethodsTwo (...) cross-sectional surveys using self-administered questionnaires were conducted. Study 1 included 72 participants; interns, medical officers, and consultants working at Patan Academy of Health Sciences. Study 2 was a comparative study conducted among 54 medical officers who had received formal medical ethics education (Group 1) and 60 medical officers who did not (Group 2).ResultsParticipants who had completed post-graduate education had higher knowledge (p = 0.050), practice (p < 0.001), and overall combined scores (p = 0.011). Participants with ethics education had higher knowledge (p < 0.001), attitude (p = 0.001), practice (p < 0.001), and overall score (p < 0.001). Most participants preferred consulting colleagues if an ethical dilemma arose. Fewer participants had heard of the Declaration of Helsinki. Most participants thought doctors to be most capable of judging what is best for the patient (Study 1: 70.42%, Study 2 Group 1: 42.59%, Group 2: 80%). Case scenarios in which participants demonstrated poor practice were ethical issues concerning truth-telling, end-of-life decisions, treating HIV/aids patients, treating a minor, and reporting colleague’s errors.ConclusionsThis study found that participants who have received medical ethics education have higher knowledge, attitude, and practice scores. The results further justify the need for medical ethics education to be a part of the core medical curriculum. A blame-free environment where seniors can be approached for advice should be created. Research ethics should also be given attention. During medical ethics training, ethical issues where doctors perform poorly should be given more priority and should be discussed in a country-specific context. (shrink)

BackgroundClinical ethics consultations can be complex interventions, involving multiple methods, stakeholders, and competing ethical values. Despite longstanding calls for rigorous evaluation in the field, progress has been limited. The Medical Research Council proposed guidelines for evaluating the effectiveness of complex interventions. The evaluation of CEC may benefit from application of the MRC framework to advance the transparency and methodological rigor of this field. A first step is to understand the outcomes measured in evaluations of CEC in healthcare settings. ObjectiveThe primary (...) objective of this review was to identify and map the outcomes reported in primary studies of CEC. The secondary objective was to provide a comprehensive overview of CEC structures, processes, and roles to enhance understanding and to inform standardization.MethodsWe searched electronic databases to identify primary studies of CEC involving patients, substitute decision-makers and/or family members, clinicians, healthcare staff and leaders. Outcomes were mapped across five conceptual domains as identified a priori based on our clinical ethics experience and preliminary literature searches and revised based on our emerging interpretation of the data. These domains included personal factors, process factors, clinical factors, quality, and resource factors. ResultsForty-eight studies were included in the review. Studies were highly heterogeneous and varied considerably regarding format and process of ethical intervention, credentials of interventionist, population of study, outcomes reported, and measures employed. In addition, few studies used validated measurement tools. The top three outcome domains that studies reported on were quality, process factors, and clinical factors. The majority of studies examined multiple outcome domains. All five outcome domains were multidimensional and included a variety of subthemes.ConclusionsThis scoping review represents the initial phase of mapping the outcomes reported in primary studies of CEC and identifying gaps in the evidence. The confirmed lack of standardization represents a hindrance to the provision of high quality intervention and CEC scientific progress. Insights gained can inform the development of a core outcome set to standardize outcome measures in CEC evaluation research and enable scientifically rigorous efficacy trials of CEC. (shrink)

Clinical ethics consultants (CECs) work in complex environments ripe with multiple types of expectations. Significantly, some are due to the perspectives of professional colleagues and the patients and families with whom CECs consult and concern how CECs can, do, or should function, thus adding to the moral complexity faced by CECs in those particular circumstances. We outline six such common expectations: Ethics Police, Ethics Equalizer, Ethics Superhero, Ethics Expediter, Ethics Healer or Ameliorator, and, finally, Ethics Expert. Framed by examples of (...) requests for ethics consultation that illustrate each kind, along with brief descriptions, we argue that while these expectations ought to be resisted for clear and practical reasons, they also create opportunities for CECs to articulate, educate, and ultimately be responsible to the professional demands of clinical ethics work. Recognizing, acknowledging, and at times resisting those expectations thus become key activities and responsibilities in the performance of ethics consultation. (shrink)

Background Non-adherence to medication is associated with increased risk of relapse in patients with bipolar disorder. Objectives To validate patient-evaluated adherence to medication measured via smartphones against validated adherence questionnaire; and investigate characteristics for adherence to medication measured via smartphones. Methods Patients with BD evaluated adherence to medication daily for 6–9 months via smartphones. The Medication Adherence Rating Scale and the Rogers’ Empowerment questionnaires were filled out. The 17-item Hamilton Depression Rating Scale, the Young Mania Rating Scale and the Functional (...) Assessment Short Test were clinically rated. Data were collected multiple times per patient. The present study represents exploratory pooled reanalyses of data collected as part of two randomised controlled trials. Findings During the study 90.50% of the days were evaluated as ‘medication taken’, 6.91% as ‘medication taken with changes’ and 2.59% as ‘medication not taken’. Adherence to medication measured via smartphones was valid compared with the MARS. Younger age and longer illness duration were significant predictors for non-adherence to medication. Decreased affective symptoms measured with smartphone-based patient-reported mood and clinical ratings as well as decreased empowerment were associated with non-adherence. Conclusions Smartphone-based monitoring of adherence to medication was valid compared with validated adherence questionnaire. Younger age and longer illness duration were predictors for non-adherence. Increased empowerment was associated with adherence. Clinical implications Using smartphones for empowerment of adherence using patient-reported measures may be helpful in everyday clinical settings. Trial registration number NCT01446406 and NCT02221336. (shrink)