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

Abstract

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.

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

“…There are only a few examples of ethics support tools in the literature. They vary from developing a moral compass tool for questions of client autonomy, to an ethics support tool supporting care providers in gender care with questions concerning the competency of young clients, and an ethics support tool to help individual patients with life-limiting illnesses to take action and guide them through ethical decision making [21][22][23][24][25].…”

“…So far, CES tools were developed for health care professionals [21,22,24]. In these examples, the developers were mostly CES staff that had no specific normative aim or goal in developing the tool itself, nor in the content or design of the tool.…”

Ethical Need for a Fertility Decision-Aid for Transgender Adults of Reproductive Age

“…71 Furthermore, a decision aid would allow for shared decision-making, where the patient is an active participant and co-designer of their treatment plan. 72 Shared decision-making acknowledges the healthcare provider's beneficence, knowledge, and experience while equally valuing the right to patient autonomy and respecting the ability of the patient to inform the provider. 73 A decision aid can help initiate the conversations between a patient and their provider that allow for a true partnership in decision-making.…”

Medical decision-making competence regarding puberty suppression: perceptions of transgender adolescents, their parents and clinicians

“…Dutch researchers have, largely based on the information gained in the current study, developed an ethics support tool (in Dutch: 'wilsbekwaamheidswijzer') that provides clinicians information and direction on how to deal with adolescents' MDC. The tool provides clinical guidance on assessing adolescents' MDC, for example regarding what aspects the adolescents should understand about the treatment before they are considered competent [74,75]. Making such an ethics support tool available to clinicians in other countries as well could be very helpful.…”