“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

ABSTRACT

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.

KEYWORDS:

• Gender incongruence
• transgender
• ethics
• shared decision-making
• qualitative research

Acknowledgments

We thank the participating TGD people for sharing their time, experiences, and insights. Furthermore, we are grateful for the input of the overarching research project’s sounding board and steering group. Finally, we express our gratitude for the ongoing partnership in clinical practice and research between the Center of Expertise on Gender Dysphoria and the Ethics Support Group of the department of Ethics, Law, & Medical Humanities, both affiliated with Amsterdam University Medical Centers.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. CES aims to support stakeholders in dealing with ethical issues in clinical practice and thereby seeks to improve moral competencies, cooperation, and quality of care. Increasingly, CES is offered in GAMC in the form of ethics consultations (Mabel et al., 2019), Moral Case Deliberation (e.g., Vrouenraets et al., 2020), and/or integrated into daily practice (Hartman et al., 2019).

2. We report further on participants’ reflections of this study’s findings in a manuscript that details the co-creation process of an ethics support tool.

3. Of those interviewed, six reached out after they (or an acquaintance of theirs) read the call on the website of the participating academic institution or the website of the national TGD client organization. Two responded to a call at the participating institution’s online science event. The final two were approached by a nonacademic partner institution based on our in- and exclusion criteria.

4. The questions following the normative statements in the theme headers are ours. In so doing, we stress how these overarching ethical norms ought to be interpreted and made more explicit.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.