"I Should've Been Able to Decide for Myself, but I Didn't Want to Be Left Alone." A Qualitative Interview Study of Clients' Ethical Challenges and Norms Regarding Decision-Making in Gender-Affirming Medical Care.

This qualitative study aimed to map and provide insight into the ethical challenges and norms of adult transgender and gender diverse (TGD) clients in gender-affirming medical care (GAMC). By doing so, we seek to make an empirical and constructive contribution to the dialogue on and moral inquiry into what good decision-making in GAMC should entail. We conducted 10 semi-structured interviews with adult Dutch TGD people who received GAMC. In our thematic analysis, we (1) included both ethical challenges and norms, (2) differentiated between explicit and implicit ethical challenges and norms, and (3) ascertained the specific context in which the latter emerged. We identified the following themes: (1) clients should be in the lead, (2) harm should be prevented, and (3) the decision-making process should be attuned to the individual client. These themes arose in the context of (1) a precarious client-clinician relationship and (2) distinct characteristics of GAMC. Our findings highlight divergent and dynamic decisional challenges and normative views-both within individual clients and among them. We conclude that there is no single ideal model of good decision-making in GAMC and argue that elucidating and jointly deliberating on decisional norms and challenges should be an inherent part of co-constructing good decision-making.

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.

GenderJourney: Participatory development of an ethics support tool to foster dialogue and reflection on shared decision-making in gender-affirming medical care.

OBJECTIVE: To describe and reflect on the development process of GenderJourney: an ethics support tool that seeks to foster (dialogue and reflection on) shared decision-making (SDM) in gender-affirming medical care (GAMC). METHODS: Part of a larger project, this study used a participatory design. We included transgender and gender diverse (TGD) clients and healthcare professionals (HCPs) throughout the study in co-creation workshops. In an iterative process, we (1) established stakeholders' needs, (2) reached a consensus on the aims, content, and design, (3) developed and tested successive renditions, and (4) presented the final version of the tool. RESULTS: The final tool aims to (A) elucidate the client's care request and corresponding treatment preferences, (B) foster an explicit dialogue between TGD client and HCP about expected/preferred decisional roles and collaboration, (C) stimulate a systematic joint reflection on and handling of SDM-related ethical challenges. CONCLUSION: The GenderJourney provides non-directive ethics support to jointly reflect on and foster good SDM, including its inherent ethical challenges. Future studies should focus on its implementation and actual contribution to good SDM. PRACTICE IMPLICATIONS: GenderJourney may be used in GAMC to support the dialogue on what good SDM entails and the identification, discussion, and handling of SDM-related ethical challenges.

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.

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.

Moral Challenges in Transgender Care: A Thematic Analysis Based on a Focused Ethnography.

Treatment teams providing transgender-affirming medical care are inherently faced with various kinds of moral and ethical dilemmas and questions, which are becoming even more pressing due to increasing treatment numbers and public attention for transgender care. Little is known about what kinds of moral and ethical challenges manifest in clinical practice. The aim of the present research was to map the moral and ethical challenges of healthcare professionals working in a specialized multidisciplinary transgender care center. Over a period of 7 months, during a focused ethnographic study, data were collected through participant observation of multidisciplinary team meetings, observation of individual psychodiagnostic assessment sessions with clients, and analysis of transcripts and reports of a series of moral case deliberations. A thematic content analysis of the data identified various implicit and explicit moral and ethical challenges around the following six themes: (1) assessing eligibility; (2) content of treatment; (3) sequential order of the treatment steps; (4) role of the clinical guidelines; (5) differing notions regarding gender identity, and (6) decision-making process. Our research provides a detailed insight into the way healthcare professionals experience these moral and ethical challenges and how they are related to (local) guidelines, the multidisciplinary character of GD care, and its inherent implicit and explicit gender norms. Our findings suggest that good transgender care may profit from continuous multidisciplinary deliberation of and sensitivity toward the normative dimension of transgender care. The paper ends with recommendations for ethics support mechanisms in transgender care.

The discovery of deliberation. From ambiguity to appreciation through the learning process of doing Moral Case Deliberation in Dutch elderly care.

In the field of bioethics a trend can be noticed toward deliberative and collective forms of moral reflection among practitioners. Moral Case Deliberation (MCD) is an example of this development and currently introduced in an increasing number of health care organizations in the Netherlands, including elderly care. The purpose of this article is to evaluate the process of implementation of MCD focusing on the learning experiences of practitioners over time. The article is grounded in a naturalistic evaluation of the implementation of MCD in two elderly care institutions between 2006 and 2012. Methods included interviews, participant observations and focus groups. The results indicate that gaining experience with MCD brought about a learning process in which both the learning of competence for reflection and deliberation (e.g. an exploratory attitude) and experiencing the benefits (e.g. relief of moral distress) were key elements. We conclude that doing ethics is the best way to motivate practitioners to engage in moral deliberations on the work floor. Gaining practical experience should be explicitly stimulated bottom-up and facilitated top-down.