Background There has been little attention paid to research on the outcomes of clinical ethics support or critical reflection on what constitutes a good CES outcome. Understanding how CES users perceive the importance of CES outcomes can contribute to a better understanding, use of and normative reflection on CES outcomes. Objective To describe the perceptions of Dutch healthcare professionals on important outcomes of moral case deliberation, prior to MCD participation, and to compare results between respondents. Methods This mixed-methods study used (...) both the Euro-MCD instrument and semi-structured interviews. Healthcare professionals who were about to implement MCD were recruited from nursing homes, hospitals, psychiatry and mentally disabled care institutions. Results 331 healthcare professionals completed the Euro-MCD instrument, 13 healthcare professionals were interviewed. The outcomes perceived as most important were ‘more open communication’, ‘better mutual understanding’, ‘concrete actions’, ‘see the situation from different perspectives’, ‘consensus on how to manage the situation’ and ‘find more courses of action’. Interviewees also perceived improving quality of care, professionalism and the organization as important. Women, nurses, managers and professionals in mentally disabled care rated outcomes more highly than other respondents. Conclusions Dutch healthcare professionals perceived the MCD outcomes related to collaboration as most important. The empirical findings can contribute to shared ownership of MCD and a more specific use of MCD in different contexts. They can inform international comparative research on different CES types and contribute to normative discussions concerning CES outcomes. Future studies should reflect upon important MCD outcomes after having experienced MCD. (shrink)

BackgroundThere is a lack of empirical research regarding the outcomes of such clinical ethics support methods as moral case deliberation. Empirical research in how healthcare professionals perceive potential outcomes is needed in order to evaluate the value and effectiveness of ethics support; and help to design future outcomes research. The aim was to use the European Moral Case Deliberation Outcome Instrument instrument to examine the importance of various MCD outcomes, according to healthcare professionals, prior to participation.MethodsA North European field survey (...) among healthcare professionals drawn from 73 workplaces in a variety of healthcare settings in the Netherlands, Norway and Sweden. The Euro-MCD instrument was used.ResultsAll outcomes regarding the domains of moral reflexivity, moral attitude, emotional support, collaboration, impact at organisational level and concrete results, were perceived as very or quite important by 76%–97% of the 703 respondents. Outcomes regarding collaboration and concrete results were perceived as most important. Outcomes assessed as least important were mostly about moral attitude. ‘Better interactions with patient/family’ emerged as a new domain from the qualitative analysis. Dutch respondents perceived most of the outcomes as significantly less important than the Scandinavians, especially regarding emotional support. Furthermore, men, those who were younger, and physician-respondents scored most of the outcomes as statistically significantly less important compared with the other respondents.ConclusionsThe findings indicate a need for a broad instrument such as the Euro-MCD. Outcomes related to better interactions between professionals and patients must also be included in the future. The empirical findings raise the normative question of whether outcomes that were perceived as less important, such as moral reflexivity and moral attitude outcomes, should still be included. In the future, a combination of empirical findings and normative reflection will contribute to the revision of the instrument. (shrink)

To support healthcare professionals in dealing with ethically difficult situations, Clinical Ethics Support (CES) services like Moral Case Deliberation (MCD) are increasingly implemented. To assess the impact of CES, it is important to evaluate outcomes. Despite general claims about outcomes from MCD experts and some qualitative research, there exists no conceptual analysis of outcomes yet. Therefore, the aim of this study was to systematically define and categorize MCD outcomes. An additional aim was to compare these outcomes with the outcomes in (...) the Euro-MCD Instrument from 2014, to further validate this Instrument. The concept mapping method was used and involves qualitative and quantitative steps including brainstorming, individual structuring, computation of concept maps (by principal component analysis and cluster analysis), group interpretation and utilization. In total, 12 experienced MCD participants from a variety of professional backgrounds participated in two sessions. The focus group brainstorm resulted in a list of 85 possible MCD outcomes, of which a point map and concept maps were constructed. After a thorough discussion of each cluster, final consensus was reached on the names and position of 8 clusters of MCD outcomes: 1) Organisation and Policy; 2) Team development; 3) Personal development focused on the Other Person; 4) Personal development as Professional, focused on Skills; 5) Personal development as Professional, focused on Knowledge; 6) Personal development as an Individual; 7) Perception and Connection; and 8) Concrete action. This study explored and categorized MCD outcomes in a concept mapping focus group. When comparing the results with the Euro-MCD Instrument, our study confirms that outcomes of MCD can be categorized in clusters referring to the organisational level, team development, personal development (both as an individual and a professional) and the concrete case-level. In developing CES evaluation tools, it is important to be explicit if an outcome refers to the individual or the team, to knowledge or skills, to the organisation or the specific case. The findings will be used in the further validation of the Euro-MCD Instrument. The current study further contributes to the field of evaluating CES in general and defining outcomes of MCD in particular. (shrink)

Background: Clinical ethics support instruments aim to support healthcare professionals in dealing with moral challenges in clinical practice. CURA is a relatively new instrument tailored to the wishes and needs of healthcare professionals in palliative care, especially nurses. It aims to foster their moral resilience and moral competences. Aim: To investigate the effects of using CURA on healthcare professionals regarding their Moral Resilience and Moral Competences. Design: Single group pre-/post-test design with two questionnaires. Methods: Questionnaires used were the Rushton Moral (...) Resilience Scale measuring Moral Resilience and the Euro-MCD, measuring Moral Competences. Respondents mainly consisted of nurses and nurse assistants who used CURA in daily practice. Forty-seven respondents contributed to both pre- and post-test with 18 months between both tests. Analysis was done using descriptive statistics and Wilcoxon signed rank tests. This study followed the SQUIRE checklist. Ethical considerations: This study was approved by the Institutional Review Board of Amsterdam UMC. Informed consent was obtained from all respondents. Results: The total Moral Resilience score and the scores of two subscales of the RMRS, that is, Responses to Moral Adversity and Relational Integrity, increased significantly. All subscales of the Euro-MCD increased significantly at posttest. Using CURA more often did not lead to significant higher scores on most (sub) scales. Conclusion: This study indicates that CURA can be used to foster moral resilience and moral competences of healthcare professionals. CURA therefore is a promising instrument to support healthcare professionals in dealing with moral challenges in everyday practice. (shrink)

The evaluation of the European Moral Case Deliberation Outcomes project (Euro-MCD) has resulted in a revised evaluation instrument, knowledge about the content of MCD (moral case deliberation), and the perspectives of those involved. In this paper, we report on a perspective that has been overlooked, the facilitators’. We aim to describe facilitators’ perceptions of high-quality moral case deliberation and their Euro-MCD sessions. The research took place in Norway, Sweden, and the Netherlands using a survey combined with interviews with 41 facilitators. (...) Facilitators’ perceived that attaining a high-quality MCD implies fostering a safe and respectful atmosphere, creating a wondering mode, being an attentive authority, developing moral reflective skills, reaching a common understanding, and ensuring organisational prerequisites for the MCD sessions. Our central conclusion is that efforts at three levels are required to attain a high-quality MCD: trained and virtuous facilitator; committed, respectful participants; and organizational space. Furthermore, managers have a responsibility to prepare MCD participants for what it means to take part in MCD. (shrink)

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or less standard. While (...) PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs. (shrink)

Background The COVID-19 pandemic causes moral challenges and moral distress for healthcare professionals and, due to an increased work load, reduces time and opportunities for clinical ethics support services. Nevertheless, healthcare professionals could also identify essential elements to maintain or change in the future, as moral distress and moral challenges can indicate opportunities to strengthen moral resilience of healthcare professionals and organisations. This study describes 1) the experienced moral distress, challenges and ethical climate concerning end-of-life care of Intensive Care Unit (...) staff during the first wave of the COVID-19 pandemic and 2) their positive experiences and lessons learned, which function as directions for future forms of ethics support. Methods A cross-sectional survey combining quantitative and qualitative elements was sent to all healthcare professionals who worked at the Intensive Care Unit of the Amsterdam UMC - Location AMC during the first wave of the COVID-19 pandemic. The survey consisted of 36 items about moral distress (concerning quality of care and emotional stress), team cooperation, ethical climate and (ways of dealing with) end-of-life decisions, and two open questions about positive experiences and suggestions for work improvement. Results All 178 respondents (response rate: 25–32%) showed signs of moral distress, and experienced moral dilemmas in end-of-life decisions, whereas they experienced a relatively positive ethical climate. Nurses scored significantly higher than physicians on most items. Positive experiences were mostly related to ‘team cooperation’, ‘team solidarity’ and ‘work ethic’. Lessons learned were mostly related to ‘quality of care’ and ‘professional qualities’. Conclusions Despite the crisis, positive experiences related to ethical climate, team members and overall work ethic were reported by Intensive Care Unit staff and quality and organisation of care lessons were learned. Ethics support services can be tailored to reflect on morally challenging situations, restore moral resilience, create space for self-care and strengthen team spirit. This can improve healthcare professionals’ dealing of inherent moral challenges and moral distress in order to strengthen both individual and organisational moral resilience. Trial registration The trial was registered on The Netherlands Trial Register, number NL9177. (shrink)

Background Decision-making competence is a complex concept in the care for transgender and gender diverse adolescents, since this type of care concerns one’s developing gender identity and involves treatment options that often lack international consensus. Even despite competence assessments, moral challenges arise in the decision-making process. Here, traditional forms of clinical ethics support such as moral case deliberation might not fit as these do not provide thematic guidance. This study therefore aimed to develop a practice-oriented ethics support tool to assist (...) care providers when dealing with moral challenges around decision-making competence in transgender adolescent care. Methods The study followed a participatory design to develop a tool in close collaboration with care providers; they had a say in all phases of development and dissemination. Firstly, nine care providers were interviewed about experienced moral challenges and needs for ethics support. Based on this, the structure and content of the tool was constructed and discussed in two focus group meetings, after which four care providers tested the tool and additional feedback was collected from the team and an advisory board. The final tool was presented to all Dutch care providers in transgender adolescent care. Results Care providers expressed a need for guidance in defining and assessing decision-making competence. Main moral challenges concerned discussing fertility options with young clients, dealing with co-occurring mental health difficulties and the decision-making role of parents. The final tool, named the Competence Consultant, is an interactive pdf containing four parts: (1) Clarify information; (2) Identify doubts and moral questions; (3) Guidance for conversations and (4) Overview and Conclusions. Discussion Developing an ethics support tool in a controversial care setting is highly relevant as it aims to help individual care providers in defining, discussing and dealing with their moral challenges in actual practice. The ‘Competence Consultant’ for transgender care providers contributes to their moral sensitivity and moral competence. It is an example of the development of innovative and integrative forms of thematic ethics support. (shrink)

Much of what we know and see of ethics support, in literature and during trainings, workshops and conferences, derives from clinical ethicists working at academic medical centers. Besides the probl...