Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation.

BACKGROUND: Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. METHOD: Based on experiences and research into MCD facilitators' needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. RESULTS: The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. CONCLUSIONS: This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools.

The Diversity Compass: a clinical ethics support instrument for dialogues on diversity in healthcare organizations.

BACKGROUND: Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive care in an inclusive work environment. Clinical ethics support (CES) services and instruments may help with adequately responding to these diversity-related moral challenges. However, although various CES instruments exist to support healthcare professionals with dealing well with morally challenging situations in healthcare, current tools do not address challenges specifically related to moral pluralism and intersectional aspects of diversity and social justice issues. This article describes the content and developmental process of a novel CES instrument called the Diversity Compass. This instrument was designed with and for healthcare professionals to dialogically address and reflect on moral challenges related to intersectional aspects of diversity and social justice issues that they experience in daily practice. METHODS: We used a participatory development design to develop the Diversity Compass at a large long-term care organization in a major city in the Netherlands. Over a period of thirteen months, we conducted seven focus groups with healthcare professionals and peer-experts, carried out five expert interviews, and facilitated four meetings with a community of practice consisting of various healthcare professionals who developed and tested preliminary versions of the instrument throughout three cycles of iterative co-creation. RESULTS: The Diversity Compass is a practical, dialogical CES instrument that is designed as a small booklet and includes an eight-step deliberation method, as well as a guideline with seven recommendations to support professionals with engaging in dialogue when they are confronted with diversity-related moral challenges. The seven recommendations are key components in working toward creating an inclusive and safe space for dialogue to occur. CONCLUSIONS: The Diversity Compass seeks to support healthcare professionals and organizations in their efforts to facilitate awareness, moral learning and joint reflection on moral challenges related to diversity and social justice issues. It is the first dialogical CES instrument that specifically acknowledges the role of social location in shaping moral perspectives or experiences with systemic injustices. However, to make healthcare more just, an instrument like the Diversity Compass is not enough on its own. In addition to the Diversity Compass, a systemic and structural approach to social justice issues in healthcare organizations is needed in order to foster a more inclusive, safe and diversity-responsive care and work environment in health care organizations.

Children's voices on their values and moral dilemmas when being cared and treated for cancer- a qualitative interview study.

BACKGROUND: Childhood cancers affect about 350 children every year in Sweden and are life-threatening diseases. During the treatment period, situations arise that can become morally challenging for the child. When knowing children's values and morally challenging situations in childhood cancer care, targeted ethics support could be developed and used in care. AIM: To explore children's values and moral dilemmas ​​when undergoing cancer treatment. METHODS: This is a qualitative study based on empirical data. The data collection was conducted through three focus group interviews and six individual interviews with children between 10 and 18 years (n = 16). A content analysis methodology was used to generate themes. Children who were/have been treated for cancer at three childhood cancer centres in Sweden were invited to participate. The study was approved by the Swedish Ethical Review Authority. The children's participation was based on voluntariness and consent/assent. FINDINGS: During the analysis, five themes of values emerged: Personal relationships, Bodily ease and identity, Feeling in control and being involved, Positive distractions and Right care that is needed. Their moral dilemmas were thematized into: Should I consider others or not? Should I rest or not? and Should I refuse treatment or not? CONCLUSION: Children undergoing cancer treatment want to have personal relationships with healthcare professionals. Their moral dilemmas were about questioning their own physical and psychological well-being against their expectations, the values of others and the treatment required. Further research is needed to understand how to deal with moral dilemmas in children undergoing cancer treatment.

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.

Doing and undoing transgender health care: The ordering of 'gender dysphoria' in clinical practice.

A formal Gender Dysphoria classification- as outlined in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders- is a prerequisite for the reimbursement of both gender-affirming medical care and transgender mental health care in the Netherlands. Gender Dysphoria and its conceptual precursors have always been moving targets: moving due to research, policy, care practices and activism both within and outside of medicine. This raises the question of what Gender Dysphoria is exactly. To elucidate this question, we turn to the people who use the concept in clinical practice to come to a diagnosis and treatment indication: mental health professionals working in gender-affirming medical care and transgender mental health care. Using a material semiotics approach, we reflect upon how Gender Dysphoria is done in clinical practice. Based on an analysis of seventeen practice-based interviews with clinicians as well as an examination of clinical guidelines and texts, we describe four modes in which Gender Dysphoria is ordered. These modes of ordering illustrate that Gender Dysphoria is not one, but multiple. We illustrate how in the mode of isolating, Gender Dysphoria is something which is carefully isolated from mental disorders, while in the modes doing the future and narrating, Gender Dysphoria is done as a continuous and predictable object of care. Such orderings of Gender Dysphoria potentially conflict with a fourth mode of ordering: the doing of diversity in transgender health care. The study's findings provide empirical insights into how transgender health care is currently done in The Netherlands and provide a foundation on which ethical debates on what good transgender health care should entail.

Personal health monitoring in the armed forces - scouting the ethical dimension : A case study in the Netherlands Armed Forces during the Covid-19 pandemic.

BACKGROUND: The field of personal health monitoring (PHM) develops rapidly in different contexts, including the armed forces. Understanding the ethical dimension of this type of monitoring is key to a morally responsible development, implementation and usage of PHM within the armed forces. Research on the ethics of PHM has primarily been carried out in civilian settings, while the ethical dimension of PHM in the armed forces remains understudied. Yet, PHM of military personnel by design takes place in a different setting than PHM of civilians, because of their tasks and the context in which they operate. This case study therefore focusses on obtaining insights into the experiences and related values of different stakeholders regarding an existing form of PHM, the Covid-19 Radar app, in the Netherlands Armed Forces. METHODS: We carried out an exploratory qualitative study, using semi-structured interviews with twelve stakeholders in the Netherlands Armed Forces. We focussed on participation in the use of PHM, reflections on the practical use and use of data, moral dilemmas and the need for ethics support, all in regard to PHM. The data was analysed using an inductive thematic approach. RESULTS: Three interlinking categories reflecting ethical dimensions of PHM emerged: (1) values, (2) moral dilemmas, and (3) external norms. The main values identified were: security (in relation to data), trust and hierarchy. Multiple related values were found. Some, but no broadly shared, moral dilemmas were identified and no strong need for ethics support was expressed. CONCLUSION: This study shed light on key values, provide insights in the experienced and presumed moral dilemmas and bring to mind ethics support considerations when looking at PHM in the armed forces. Some values bring a certain vulnerability to military users when personal and organisational interests are not aligned. Furthermore, some identified values may hinder a careful consideration of PHM because they potentially conceal parts of ethical dimensions of PHM. Ethics support can assist in uncovering and addressing these concealed parts. The findings highlight a moral responsibility for the armed forces to devote attention to the ethical dimensions of PHM.

Two years of ethics reflection groups about coercion in psychiatry. Measuring variation within employees' normative attitudes, user involvement and the handling of disagreement.

BACKGROUND: Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees' attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. METHODS: We used panel data in a longitudinal design study to measure variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0-T1-T2). Mixed models were used to account for dependence of data in persons who participated more than once. RESULTS: In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. CONCLUSIONS: This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since-despite the intrinsic value of participating in ERG or MCD-CES inherently aims, and should aim, at improving clinical practices.

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.

Fostering moral resilience through moral case deliberation.

Moral distress forms a major threat to the well-being of healthcare professionals, and is argued to negatively impact patient care. It is associated with emotions such as anger, frustration, guilt, and anxiety. In order to effectively deal with moral distress, the concept of moral resilience is introduced as the positive capacity of an individual to sustain or restore their integrity in response to moral adversity. Interventions are needed that foster moral resilience among healthcare professionals. Ethics consultation has been proposed as such an intervention. In this paper, we add to this proposition by discussing Moral Case Deliberation (MCD) as a specific form of clinical ethics support that promotes moral resilience. We argue that MCD in general may contribute to the moral resilience of healthcare professionals as it promotes moral agency. In addition, we focus on three specific MCD reflection methods: the Dilemma Method, the Aristotelian moral inquiry into emotions, and CURA, a method consisting of four main steps: Concentrate, Unrush, Reflect, and Act. In practice, all three methods are used by nurse ethicists or by nurses who received training to facilitate reflection sessions with these methods. We maintain that these methods also have specific elements that promote moral resilience. However, the Dilemma Method fosters dealing well with tragedy, the latter two promote moral resilience by including attention to emotions as part of the reflection process. We will end with discussing the importance of future empirical research on the impact of MCD on moral resilience, and of comparing MCD with other interventions that seek to mitigate moral distress and promote moral resilience.

CURA-An Ethics Support Instrument for Nurses in Palliative Care. Feasibility and First Perceived Outcomes.

Evaluating the feasibility and first perceived outcomes of a newly developed clinical ethics support instrument called CURA. This instrument is tailored to the needs of nurses that provide palliative care and is intended to foster both moral competences and moral resilience. This study is a descriptive cross-sectional evaluation study. Respondents consisted of nurses and nurse assistants (n = 97) following a continuing education program (course participants) and colleagues of these course participants (n = 124). Two questionnaires with five-point Likert scales were used. The feasibility questionnaire was given to all respondents, the perceived outcomes questionnaire only to the course participants. Data collection took place over a period of six months. Respondents were predominantly positive on most items of the feasibility questionnaire. The steps of CURA are clearly described (84% of course participants agreed or strongly agreed, 94% of colleagues) and easy to apply (78-87%). The perceived outcomes showed that CURA helped respondents to reflect on moral challenges (71% (strongly) agreed), in perspective taking (67%), with being aware of moral challenges (63%) and in dealing with moral distress (54%). Respondents did experience organizational barriers: only half of the respondents (strongly) agreed that they could easily find time for using CURA. CURA is a feasible instrument for nurses and nurse assistants providing palliative care. However, reported difficulties in organizing and making time for reflections with CURA indicate organizational preconditions ought to be met in order to implement CURA in daily practice. Furthermore, these results indicate that CURA helps to build moral competences and fosters moral resilience.

What outcomes of moral case deliberations are perceived important for healthcare professionals to handle moral challenges? A national cross-sectional study in paediatric oncology.

BACKGROUND: In paediatric oncology, healthcare professionals face moral challenges. Clinical ethics support services, such as moral case deliberation (MCD), aim to assist them in dealing with these challenges. Yet, healthcare professionals can have different expectations and goals related to clinical ethics support services. METHODS: In this study, the perceptions held by healthcare professionals (nursing assistants, registered nurses, physicians, and others) regarding the importance of possible outcomes of MCDs, prior to implementation of MCDs, were investigated. A multisite, cross-sectional, quantitative study was performed at all six Paediatric Oncology Centres in Sweden. Healthcare professionals answered the Euro-MCD instrument with 26 potential MCD outcomes using a scale from Not important (1) to Very important (4). Descriptive and comparative statistical analyses were carried out. RESULTS: All outcomes were rated high, i.e., between 3.12 and 3.78. More open communication, developing skills to analyse ethically difficult situations, better mutual understanding, and deciding on concrete actions were rated as most important. Understanding of ethical theories and critical examination of policies were rated less important. Most often nursing assistants rated higher and physicians lower than the other professions did. Women and participants without previous experience of MCDs perceived outcomes as more important. There were differences between centres as one centre had significantly higher, and one centre had significantly lower ratings compared to the others. CONCLUSION: It is clear that healthcare professionals want MCDs to improve teamwork and skills in order to analyse and manage ethically difficult situations. When comparing to previous research about important MCD outcomes, there were similarities in what healthcare professionals consider to be important when handling moral challenges regardless of country and potential differences in healthcare settings and systems, such as paediatric vs. adult care.

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.

Sharing decisions amid uncertainties: a qualitative interview study of healthcare professionals' ethical challenges and norms regarding decision-making in gender-affirming medical care.

BACKGROUND: In gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in assessing GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands. METHODS: In this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents' explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged. RESULTS: Respondents' ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC's guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI. CONCLUSIONS: This interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise.

Conceptualizing and Fostering the Quality of CES Through a Dutch National Network on CES (NEON).

The prevalence of Clinical ethics support (CES) services is increasing. Yet, questions about what quality of CES entails and how to foster the quality of CES remain. This paper describes the development of a national network (NEON), which aimed to conceptualize and foster the quality of CES in the Netherlands simultaneously. Our methodology was inspired by a responsive evaluation approach which shares some of our key theoretical presuppositions of CES. A responsive evaluation methodology engages stakeholders in developing quality standards of a certain practice, instead of evaluating a practice by predefined standards. In this paper, we describe the relationship between our theoretical viewpoint on CES and a responsive evaluation methodology. Then we describe the development of the network (NEON) and focus on three activities that exemplify our approach. In the discussion, we reflect on the similarities and differences between our approach and other international initiatives focusing on the quality of CES.

Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care.

BACKGROUND: In childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden. METHODS: This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation. RESULTS: Data was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals' perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows: Interprofessional well-being in team interactions on a team level; Professional comfort when dealing with moral challenges on a personal level; and Improved quality of care for the child and the family on a care level. CONCLUSIONS: Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support.

Decision-making approaches in transgender healthcare: conceptual analysis and ethical implications.

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the (biomedical) evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the 'Standards of Care' and the so-called 'Informed Consent Model'. In these care models, ethical notions and principles such as 'decision-making' and 'autonomy' are often referred to, but left unsubstantiated. This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the 'Standards of Care' and 'Informed Consent Model' currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders' ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process.

Dealing with Moral Challenges in Treatment of Transgender Children and Adolescents: Evaluating the Role of Moral Case Deliberation.

Treatment teams providing affirmative medical transgender care to young people frequently face moral challenges arising from the care they provide. An adolescent's capacity to consent, for example, could raise several issues and challenges. To deal with these challenges more effectively, several Dutch treatment teams started using a relatively well-established form of clinical ethics support (CES) called Moral Case Deliberation (MCD). MCD is a facilitator-led, collective moral inquiry based on a real case. This study's purpose is to describe the teams' perceived value and effectiveness of MCD. We conducted a mixed methods evaluation study using MCD session reports, individual interviews, focus groups, and MCD evaluation questionnaires. Our results show that Dutch transgender care providers rated MCD as highly valuable in situations where participants were confronted with moral challenges. The health care providers reported that MCD increased mutual understanding and open communication among team members and strengthened their ability to make decisions and take action when managing ethically difficult circumstances. However, the health care providers also expressed criticisms of MCD: some felt that the amount of time spent discussing individual cases was excessive, that MCD should lead to more practical and concrete results, and that MCD needed better integration and follow-up in the regular work process. We recommend future research on three matters: studying how MCD contributes to the quality of care, involvement of transgender people themselves in MCD, and integration of CES into daily work processes.

Theory and practice of integrative clinical ethics support: a joint experience within gender affirmative care.

BACKGROUND: Clinical ethics support (CES) aims to support health care professionals in dealing with ethical issues in clinical practice. Although the prevalence of CES is increasing, it does meet challenges and pressing questions regarding implementation and organization. In this paper we present a specific way of organizing CES, which we have called integrative CES, and argue that this approach meets some of the challenges regarding implementation and organization. METHODS: This integrative approach was developed in an iterative process, combining actual experiences in a case study in which we offered CES to a team that provides transgender health care and reflecting on the theoretical underpinnings of our work stemming from pragmatism, hermeneutics and organizational and educational sciences. RESULTS: In this paper we describe five key characteristics of an integrative approach to CES; 1. Positioning CES more within care practices, 2. Involving new perspectives, 3. Creating co-ownership of CES, 4. Paying attention to follow up, and 5. Developing innovative CES activities through an emerging design. CONCLUSIONS: In the discussion we compare this approach to the integrated approach to CES developed in the US and the hub and spokes strategy developed in Canada. Furthermore, we reflect on how an integrative approach to CES can help to handle some of the challenges of current CES.

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.