BackgroundIn 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.MethodsIn 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.ResultsRespondents’ 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.ConclusionsThis 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. (shrink)

In their paper (‘ Morisprudence: a theoretical framework for studying the relationship linking moral case deliberation, organisational learning and quality improvement ‘),1 Kok et al addresses an important topic: how to theoretically think about studying the impact of moral case deliberations and how to conceptualise organisational learning? In this article, they aim to develop a theoretical framework that provides empirically assessable hypotheses that describe the relationship between moral case deliberation and care quality at an organisational level. The authors describe care (...) quality mostly in terms of practical wisdom which they aggregate into both individual and organisational morisprudence. Morisprudence is defined as an ongoing formulation of moral judgements. However, it remains a bit unclear how the theoretical framework of Kok et al may lead to empirically assessable hypotheses. Concepts like ‘quality’, ‘quality of care’, ‘practical wisdom’ and ‘individual and organisational morisprudence’ are not described in detail, let alone operationalised in measurable terms. How should we understand morisprudence in empirical terms? What is a good morisprudence? And how should we measure or conclude whether morisprudence has been improved (or not)? The authors rightfully focus on the need for organisational learning during and through Moral Case Deliberation (MCD). Too often, MCD is only described as the discussion of one patient’s case, thereby implicitly suggesting that the learning process only takes place at the level of an individual case. Yet, based on many years of MCD evaluation research, we know from mostly …. (shrink)

BackgroundExisting clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care. MethodWe used a participatory development design. We worked together with stakeholders in a Community of Practice throughout the (...) study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA.ResultsWe distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the instrument on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The instrument, CURA, is a four-step low-threshold instrument that fosters ethical reflection.ConclusionsParticipatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics instruments. (shrink)

This article presents an ethics support instrument for healthcare professionals called CURA. It is designed with a focus on and together with nurses and nurse assistants in palliative care. First, we shortly go into the background and the development study of the instrument. Next, we describe the four steps CURA prescribes for ethical reflection: (1) Concentrate, (2) Unrush, (3) Reflect, and (4) Act. In order to demonstrate how CURA can structure a moral reflection among caregivers, we discuss how a case (...) was discussed with CURA at a psychogeriatric ward of an elderly care home. Furthermore, we go into some considerations regarding the use of the instrument in clinical practice. Finally, we focus on the need for further research on the effectiveness and implementation of CURA. (shrink)

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. (shrink)

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the 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. (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)