What is a High-Quality Moral Case Deliberation?-Facilitators' Perspectives in the Euro-MCD Project.

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.

Moral distress and positive experiences of ICU staff during the COVID-19 pandemic: lessons learned.

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.

Effectiveness of CURA: Healthcare professionals' moral resilience and moral competences.

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.

Patient participation in Dutch ethics support: practice, ideals, challenges and recommendations-a national survey.

BACKGROUND: Patient participation in clinical ethics support services (CESS) 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 (fused and abbreviated hereafter as: PP) 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 (1) goals of CESS, (2) status quo of PP, (3) ideas and ideals concerning PP, and (4) obstacles for PP. DISCUSSION: The four most important findings were that: (1) Patient participation in Dutch CESS is far from standard. (2) Views on patient participation are very much intertwined with the goals of ethics support. (3) Hesitations, fears and perceived obstacles for PP were not on principle and (4) 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 (HCPs). Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs.

How to deal with moral challenges around the decision-making competence in transgender adolescent care? Development of an ethics support tool.

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.

Field-testing the Euro-MCD Instrument: Experienced outcomes of moral case deliberation.

BACKGROUND: Moral case deliberation is a form of clinical ethics support to help healthcare professionals in dealing with ethically difficult situations. There is a lack of evidence about what outcomes healthcare professionals experience in daily practice after moral case deliberations. The Euro-MCD Instrument was developed to measure outcomes, based on the literature, a Delphi panel, and content validity testing. To examine relevance of items and adequateness of domains, a field study is needed. AIM: To describe experienced outcomes after participating in a series of moral case deliberations, both during sessions and in daily practice, and to explore correlations between items to further validate the Euro-MCD Instrument. METHODS: In Sweden, the Netherlands, and Norway, healthcare institutions that planned a series of moral case deliberations were invited. Closed responses were quantitatively analyzed. The factor structure of the instrument was tested using exploratory factor analyses. ETHICAL CONSIDERATIONS: The study was approved in Sweden by a review board. In Norway and the Netherlands, data services and review boards were informed about the study. RESULTS: The Euro-MCD Instrument was completed by 443 and 247 healthcare professionals after four and eight moral case deliberations, respectively. They experienced especially outcomes related to a better collaboration with co-workers and outcomes about individual moral reflexivity and attitude, both during sessions and in daily practice. Outcomes were experienced to a higher extent during sessions than in daily practice. The factor structure revealed four domains of outcomes, which did not confirm the six Euro-MCD domains. CONCLUSION: Field-testing the Euro-MCD Instrument showed the most frequently experienced outcomes and which outcomes correlated with each other. When revising the instrument, domains should be reconsidered, combined with theory about underlying concepts. In the future, a feasible and valid instrument will be presented to get insight into how moral case deliberation supports and improves healthcare.

Important outcomes of moral case deliberation: a Euro-MCD field survey of healthcare professionals' priorities.

BACKGROUND: There is a lack of empirical research regarding the outcomes of such clinical ethics support methods as moral case deliberation (MCD). 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 (Euro-MCD) instrument to examine the importance of various MCD outcomes, according to healthcare professionals, prior to participation. METHODS: A 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. RESULTS: All 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. CONCLUSIONS: The 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 (practice) and normative reflection (theories) will contribute to the revision of the instrument.

Defining and categorizing outcomes of Moral Case Deliberation (MCD): concept mapping with experienced MCD participants.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study.

BACKGROUND: Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. OBJECTIVE: To examine whether and how the steps of SDM can be recognized in decision making about second- and third-line chemotherapy. METHODS: Fourteen advanced cancer patients were followed over time using face-to-face in-depth interviews and observations of the patients' out-clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. RESULTS: Patients were satisfied with the decision-making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. CONCLUSION: To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.

What Outcomes do Dutch Healthcare Professionals Perceive as Important Before Participation in Moral Case Deliberation?

BACKGROUND: There has been little attention paid to research on the outcomes of clinical ethics support (CES) 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 (MCD), 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.

Perspectives of Medical Specialists on Sharing Decisions in Cancer Care: A Qualitative Study Concerning Chemotherapy Decisions With Patients With Recurrent Glioblastoma.

BACKGROUND: In cancer care, difficult decisions concerning advanced treatment need to be made, weighing possible life prolongation against harmful side effects. Treatment is frequently started, showing the need to explore how decisions are made. Little is known about the perspectives of physicians on sharing decision making with patients. This qualitative study aimed to describe the perspectives of medical specialists on the decision-making process with patients with glioblastoma concerning starting new treatment. METHODS: Qualitative interviews were held with medical specialists. One focus group was organized with medical professionals. Their opinions about elements of shared decision making and the applicability in the context of patients with glioblastoma were assessed. The topic list for the focus group was based on the analysis of the interviews. Qualitative analysis of the transcripts was performed by three researchers independently. RESULTS: Medical specialists considered shared decision making to be important; however, they did not adhere to its elements. Stopping treatment was not considered equal to continuing treatment. Exploration of the patients' wishes was done implicitly, and shared responsibility for the decision was not highly recognized. The main barriers to shared decision making were preferences of both patients and specialists for starting or continuing treatment and assumptions of physicians about knowing what patients want. CONCLUSION: Medical specialists recognized the importance of patient involvement but experienced difficulty in sharing decision making in practice. Elements of shared decision making are partly followed but do not guide decision making. To improve cancer care, education of medical specialists and adjustment to the elements are needed to involve patients.

Moral distress reduction using moral case deliberation in Japan: A mixed-methods study.

AIMS: This study aims to develop and examine the effectiveness of a support program for reducing moral distress of nurses, based on the moral case deliberation methodology, and to study the feasibility of its implementation. METHODS: Study design was an intervention study with pre/post-comparison. The support program included a short lecture and three moral case deliberation sessions for nurses working in an acute care hospital. The Measure of Moral Distress for Healthcare Professionals (MMD-HP) and the Euro-MCD (Moral Case Deliberation) 2.0 scale were used for pre/post-comparison, using the Wilcoxon's signed-rank test. Furthermore, post-intervention interviews were conducted with consenting participants to determine the reasons for changes in pre/post-intervention quantitative data. Of the 34 participants, 29 completed the post-questionnaire and were included in the quantitative data analysis, and 27 were included in the qualitative data analysis. RESULTS: The mean MMD-HP total scores increased from 147.5 ± 61.0 to 159.3 ± 66.7, but not significantly (p = .375). The mean score of moral competence, a sub-scale of the Euro-MCD 2.0, increased significantly from 15.4 ± 2.4 to 16.4 ± 2.8 after the intervention (p = .036). A qualitative analysis revealed increased moral sensitivity to ethically difficult situations and improved analytical skills as the reasons for change in scores pre/post-intervention. CONCLUSION: The results of the qualitative analysis suggested the effectiveness of the intervention. The moral distress score increased, although not significantly, and moral competence also increased, suggesting the participants' values changed after the intervention. It was found that the support program using MCD is expected to improve participants' moral competence.

[Perspectives of medical specialists on sharing decisions in cancer care: a qualitative study concerning chemotherapy decisions with patients with recurrent glioblastoma]. / Wel of geen kankerbehandeling in de resterende tijd? Specialisten over gedeelde besluitvorming bij recidiverend glioblastoom.

BACKGROUND: In cancer care, difficult decisions concerning advanced treatment need to be made, weighing possible life prolongation against harmful side effects. Treatment is frequently started, showing the need to explore how decisions are made. Little is known about the perspectives of physicians on sharing decision making with patients. This qualitative study aimed to describe the perspectives of medical specialists on the decision-making process with patients with glioblastoma concerning starting new treatment. METHODS: Qualitative interviews were held with medical specialists. One focus group was organized with medical professionals. Their opinions about elements of shared decision making and the applicability in the context of patients with glioblastoma were assessed. The topic list for the focus group was based on the analysis of the interviews. Qualitative analysis of the transcripts was performed by three researchers independently. RESULTS: Medical specialists considered shared decision making to be important; however, they did not adhere to its elements. Stopping treatment was not considered equal to continuing treatment. Exploration of the patients' wishes was done implicitly, and shared responsibility for the decision was not highly recognized. The main barriers to shared decision making were preferences of both patients and specialists for starting or continuing treatment and assumptions of physicians about knowing what patients want. CONCLUSION: Medical specialists recognized the importance of patient involvement but experienced difficulty in sharing decision making in practice. Elements of shared decision making are partly followed but do not guide decision making. To improve cancer care, education of medical specialists and adjustment to the elements are needed to involve patients.