“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

Introduction

Since the late 1970s, clinicians, researchers, and—increasingly—transgender and gender-diverse (TGD) individuals have worked concertedly and with diligence toward developing best practices to foster the health and well-being of TGD clients. These efforts have resulted in the formulation of standards of care and consensus regarding the guiding ethical principles of the provision of gender-affirming medical care (GAMC). GAMC comprises feminizing and masculinizing medical interventions (e.g., hormones and/or surgeries) to aid the affirmation and expression of clients’ experienced gender and improve their quality of life (Coleman et al., 2012, 2022; Hembree et al., 2017; Javier et al., 2022; Wilson et al., 2021).

Notwithstanding these efforts, decision-making in GAMC is fraught with ethical challenges: situations in which stakeholders do not know, are uncertain, or are in disagreement with each other about what is good or right (Molewijk et al., 2015). Healthcare professionals (HCPs) may be confronted with questions such as: In our multidisciplinary practice, who should decide whether the risks of complication-prone interventions such as phalloplasty are acceptable (Gerritse et al., 2018)? TGD clients, on their part, may wonder to what extent they ought to be open about their doubts regarding GAMC or co-occurring social or psychological problems, as they fear it might impact their eligibility for treatment (Gerritse et al., 2018). Ethical challenges may also be shared in the client-clinician dyad. How, for example, should decisional dissensus be handled?

Several characteristics of GAMC contribute to ethical challenges in decision-making. First, the biomedical evidence base for GAMC is growing but still limited (Coleman et al., 2012, 2022; Hembree et al., 2017; Wilson et al., 2021). Second, the past decades have seen an exponential increase in those seeking GAMC and corresponding waiting lists (Goodman et al., 2019). Third, the organization of GAMC is inherently sequential and multidisciplinary (Coleman et al., 2012, 2022) and includes a pivotal yet questioned role for HCPs, especially mental health professionals (MHPs) in decision-making. Fourth, the TGD community is highly varied and so are their needs and wishes concerning GAMC (Gerritse et al., 2018; Huisman et al., 2022; Koehler et al., 2018). Fifth, the prevalence of co-occurring mental health concerns among TGD individuals is elevated (Dhejne et al., 2016). Finally, the convoluted history of psychopathologization in GAMC is echoed in current contestations regarding the clinical conceptualization and classification of gender diversity (American Psychiatric Association, 2022; World Health Organization, 2018)

Beyond these empirical complexities and uncertainties, divergent normative views on decision-making in GAMC abound. Indeed, academic and societal discourse concerning how to serve the best interests of TGD people in decision-making in GAMC is polarizing. On the one hand, a group of clients, clinicians, and advocates argue that the role of HCPs, especially MHPs, in decision-making forms an unjust barrier to TGD clients’ self-determination (e.g., Ashley, 2019; Cavanaugh et al., 2016; Schulz, 2018). Others (e.g., Evans, 2021; Littman, 2021) maintain that the principle of non-maleficence is insufficiently safeguarded in current (Western) decision-making practices. Often mentioning the risk of “regret” (the prevalence of which is considered to be low (see, e.g., Bustos et al., 2021) and “detransition” (i.e., discontinuing and/or reversing GAMC), they worry that TGD people are ushered into GAMC too quickly.

These different normative positions are also evident in decision-making and the provision of GAMC. For example, the last decade has seen an increase in local guidelines for hormone therapy that fall under the rubric of the so-called “Informed Consent Model” (ICM) for GAMC (Gerritse et al., 2021). The ICM emphasizes clients’ right to self-determination and minimizes the role of MHPs in assessing eligibility for GAMC (Deutsch, 2012; Schulz, 2018). Concurrently, (a push for) legislation aimed at curbing the provision of GAMC to, especially, TGD youth is on the rise, calling for more rigorous assessments and paternalistic approaches to GAMC (Turban et al., 2021).

Against this background, it is unsurprising that stakeholders encounter myriad decisional ethical challenges. Literature on these challenges strongly centers on those opined or expressed by clinicians and researchers (Budge & Dickey, 2017; Drescher & Pula, 2014; Kimberly et al., 2018; Swann & Herbert, 2008; Tishelman et al., 2015; Wren, 2019). The same holds for empirical research. Some have focused on the ethical complexities of providing puberty suppression (Vrouenraets et al., 2015) or fertility preservation (Chen & Simons, 2018) to TGD youth. Others describe the ethical challenges involved in assessing decisional competence, and ethical challenges concerning co-occurring concerns and the roles of TGD youth, parents/guardians, and HCPs in decision-making (Clark et al., 2021; de Snoo-Trimp et al., 2022). Those investigating the ethical challenges arising in decision-making with TGD adults frequently highlight the fundamental ethical challenge of weighing respect for clients’ self-determination against a duty to non-maleficence (Dewey, 2013; Gerritse et al., 2018; Shuster, 2021).

Remarkably, empirical research into the ethical challenges experienced by TGD clients themselves is absent. The literature offers good reasons to assume, however, that TGD clients, too, experience decisional ethical challenges in GAMC. The ethnographic findings of Canadian GAMC by MacKinnon et al. (2020) illustrate how some TGD clients concealed co-occurring mental health conditions and faced a balancing act in presenting enough distress to receive GAMC without being deemed too “mentally unstable” by their HCPs. In the European context, an online survey conducted in Germany found that 96,5% of TGD individuals desired more involvement in decision-making (Eyssel et al., 2017). Furthermore, most respondents wished to share decisional responsibility with their HCP and strengthen their role in the decision-making process. Recent reports issued by the Dutch Ministry of Health, Welfare, and Sport echo these German findings (Zorgvuldig Advies, 2019, 2020). They note how the current organization of Dutch GAMC impedes a personalized and shared approach to care and decision-making.

This qualitative interview study aimed to map and provide insight into the ethical challenges related to decision-making experienced by adult TGD clients in GAMC. In doing so, this study seeks to make an empirical and constructive contribution to both the dialogue on and moral inquiry into what good decision-making in GAMC should entail, with the ultimate aim of improving current decision-making practices. This paper aimed to address the question: What ethical challenges related to decision-making did TGD clients face in their GAMC trajectories?

Methods

Design

We conducted a qualitative interview study (Green & Thorogood, 2018) to explore the ethical challenges Dutch adult TGD clients experienced regarding decision-making in GAMC.

Setting

We conducted the interviews in the context of a larger project on ethical challenges and clinical ethics support (CES)¹ concerning shared decision-making in Dutch GAMC (2019–2022). At the time of writing, Dutch GAMC is offered at three multidisciplinary University Medical Centers (UMCs) and, increasingly, nonacademic mental healthcare centers collaborating with UMCs and other somatic healthcare providers. At the time of research and writing, Dutch GAMC guidelines were based on WPATH’s Standards of Care 7 (SoC7) (Coleman et al., 2012) and attuned to the local legal, policy, and insurance context.

Participant recruitment and selection

We included adult TGD clients who formerly engaged in decision-making regarding GAMC in the Netherlands to foreground their experiential knowledge and minimize conflicts of interest. To maximize variation, we purposively sampled for age, gender identity, and experience with academic and/or nonacademic GAMC (Green & Thorogood, 2018). Exclusion criteria were (1) current involvement in decision-making for GAMC interventions and (2) the inability to provide informed consent to the research.

Participants were recruited in three ways. First, a call was put online on the website of the participating academic institution as well as on the website of the Dutch TGD client organization. The call was also shared on the latter’s Facebook page. Second, we invited clients to respond to our call at the participating academic institution’s online public science event. Third, a stakeholder of the nonacademic partner institution approached two TGD clients based on our in- and exclusion criteria. Those interested in the study contacted us via e-mail, after which we sent them more information about the study and scheduled an introductory interview to answer questions and assess in- and exclusion criteria. Subsequently, the research team drafted a list of eligible respondents based on the abovementioned qualifiers.

Data collection

KG conducted seven, and CM, BM, and BK each conducted one semi-structured interview. Interviews were held between June 2020 and February 2021 via Microsoft Teams due to the COVID-19 pandemic. No prior contact had been established between interviewers and respondents. We based the initial interview questions on previous empirical, ethical, and conceptual research (Gerritse et al., 2018, 2021), the literature referenced above, and our experiences as clinicians, clients, and CES staff in GAMC. We did not provide definitions of “decision-making” and “ethical challenges” to evoke respondents’ lived experiences. Therefore, our interview questions were open-ended, e.g., How were decisions concerning GAMC interventions made? How did you experience this at the time? What worked well for you? Did you encounter challenges? How do you feel about the decisional process in hindsight? If you were to engage in decision-making in GAMC again, how would you envision your ideal decisional process and division of roles? Interviews were audiotaped, transcribed verbatim, and anonymized. The duration ranged from 50 to 74 minutes, with a mean of 66 minutes

Data analysis

We analyzed the transcripts thematically (Braun & Clarke, 2006). We coded all fragments relevant to the research question (i.e., inductively) using words close to the original quote (i.e., in vivo coding) in MaxQDA 12.0. First, KG and CM independently coded the first two transcripts. They compared and discussed their codes and reached a consensus, resulting in an initial code list. Next, three transcripts were coded independently by KG and either BM, BK, or BM. They used the initial code list and added codes after deliberation. This iterative comparison resulted in a code system. KG used the latter to code the rest of the dataset while adding new codes. KG then re-coded the previous transcripts to ensure no fragments had been missed (to a total of 199 codes and 1051 coded fragments). Subsequently, KG and CM divided the codes into potential (sub)themes which they discussed with the research team. KG and CM then re-coded the last three transcripts using the initial (sub)themes that we identified through the inductive (or data-driven) analysis. In this process, we checked whether the (sub)themes adequately described the relevant textual fragments in the transcripts, but also refined the names and subdivisions of the (sub)themes. Afterward, they reached a consensus about the (sub)themes with the research team through dialogue. We reached data saturation: we did not identify new themes during the verification process, indicating that the analysis was saturated (Green & Thorogood, 2018). TGD clients recognized the overall findings of this study during a member check. Notably, participants acknowledged that perspectives, values and norms pertaining to decision-making in GAMC may differ from person to person, and shift over time.²

In the absence of specific methodological guidelines, there are different conceptions of an ethical challenge. Consequently, it may be difficult to identify “ethical challenges” in empirical research (Schofield et al., 2021). We defined ethical challenges broadly as situations in which stakeholders do not know, are uncertain about, or disagree with each other about what is good or right (Molewijk et al., 2015). While we initially set out to identify ethical challenges, we found that respondents often spoke about experiencing good and/or bad (aspects) of decision-making or made statements concerning what they considered good decision-making. These latter expressions greatly outnumbered explicitly stated ethical challenges, e.g., ethical doubts and dilemmas. Therefore, we included ethical norms in our analysis as well. We also distinguished respondents’ explicit and implicit ethical challenges and norms to allow for a more thorough analysis. The former are challenges and norms explicitly verbalized by our respondents, while the latter remain largely under-discussed and are made more explicit through our interpretations. Furthermore, we differentiated between ethical challenges and norms on the one hand and the descriptive statements of the specific “context” in which they emerged on the other hand. For example, a respondent related the normative statement “people ought to be honest [about their doubts]” to the descriptive statement: “hormones aren’t sweets.” These distinctions proved useful heuristic devices.

Ethical considerations

We submitted the study protocol for review to an officially accredited IRB/REC, the Medical Ethics Committee of the Amsterdam UMC, location VUmc. They declared that a full ethical review was unnecessary under Dutch law (IRB00002991, April 21, 2020). Interested TGD clients contacted us via e-mail. We emphasized that participation in the study was voluntary and that participants could withdraw from the study at any moment. We provided the opportunity to ask questions and obtained written informed consent before the interview. At the start of the interview, we also obtained oral informed consent. We informed respondents that we would use pseudonyms and age brackets to safeguard their privacy and anonymity. Respondents received a gift card for their participation in the study.

Research team

The research team consisted of a qualitative health researcher, ethicist, and Ph.D. candidate who also worked as a junior M.D. in GAMC at the time of research (KG), a healthcare consultant and community advocate (CM), a senior researcher and psychiatrist working in GAMC for adults (MB), a senior researcher in medical psychology focusing on gender identity development and (outcomes of) GAMC (BK), an expert in qualitative health research (FdB) and an ethicist and senior researcher with experience in CES in GAMC (BM). During the study, we deliberated on how our professional and personal positionalities impact our presumptions, relationships with our respondents, and research considerations (Korstjens & Moser, 2018). An advisory and steering group comprised of academic and clinical experts, and client advocates, offered practical and methodological guidance for this study.

Results

Twenty TGD clients expressed an interest in participating in the research, of which 15 met the inclusion criteria. Of those 15, we selected 11 participants, who all agreed to participate. We conducted 10 semi-structured interviews³ as one selected participant was unresponsive. See Table 1 for the characteristics of the respondents.

Table 1. Characteristics of the research respondents.

Name*	Gender	Age range	Start GAMC	Interventions	(Non)academic GAMC
Julia	TW	20–30	5–10 yr	GAH, GAS (2×)	Academic
Monique	TW	40–50	< 5 yr	GAH, GAS	Both
Frouk	TW	50–60	< 5 yr	GAH, GAS	Both
Sandra	TW	60–70	5–10 yr	GAH, GAS (2×)	Academic
Emma	NB/TW	60–70	< 5 yr	GAH, GAS	Academic
Dennis	NB/TM	50–60	> 10 yr	GAH, GAS	Academic
Daan	TM	20–30	< 5 yr	GAH	Nonacademic
Finn	TM	20–30	5–10 yr	GAH, GAS (2×)	Nonacademic
Tim	TM	40–50	< 5 yr	GAH, GAS	Academic
Noah	TM	40–50	< 5 yr	GAH, GAS	Nonacademic

*Names are pseudonyms.

GAMC: gender-affirming medical care; TW: trans woman; TM: trans man; NB: non-binary; GAH: gender-affirming hormones; GAS: gender-affirming surgery.

We identified three main themes. Respondents expressed that (1) clients should be in the lead, (2) harm ought to be prevented, and (3) decision-making should be attuned to the individual client. We found that respondents’ interpretations and practical consequences of these ethical norms frequently varied and thus required clarification. These themes arose in the context of (1) a precarious client-clinician relationship and were related by respondents to (2) distinct characteristics of GAMC.

Clients ought to be in the lead, but what should this entail?⁴

All respondents somehow expressed that they ought to be in the lead in decision-making. The latter generally entailed that (1) the client’s needs and wishes should be foregrounded and (2) the pace and order of decision-making should be up to the client. Although this might suggest a call for radical self-determination, this was not necessarily so. For example, respondents frequently shared that (3) being in the lead should not preclude MHPs from having a “coaching” or “expert” role in decision-making.

The client’s needs and wishes should take center stage

Julia felt she had to jump through hoops to receive GAMC, while she believed the decision-making process should have pro-actively catered to her needs:

You have to get the green light [for GAMC]. That could be a lot more relaxed. That you’d just start with, ‘what are your wishes, and what would you like? What is it like to dress more in line with your experienced gender, for example? How does that feel?’ And then: ‘Suppose we give you hormones; how’s that for you?’ … It’s just better to proactively cater to people’s needs.

She related the ethical norm that clients’ needs and wishes should take center stage to the (psychological) importance of self-determination: “[I] think the feeling of being in the lead … is really important, especially when you’re just starting your transition. That you really have the feeling, like, I have that influence and those options.” To her, the latter has implications for the clinician’s decisional role: “Ideally, the clinician has a facilitating role, so to say. I’d want the clinician to really try to understand, like, ‘what is the [client’s] question, and what can we do to meet that request?’”

The pace and order of decision-making should be up to the client

Respondents’ paths toward GAMC were diverse and singular, with many relating how their decision-making processes started years before they first engaged with a specialized HCP. Likewise, their ethical norms and considerations regarding the pace of decision-making differed considerably. Here are Finn’s:

[I] felt like, if I can feel more secure that way [i.e., with a penis prosthesis], … then just leave me be for a while. I’ll do my own thing and not focus on surgery. So, waiting to be truly free, so to speak, was really important to me.

Finn noted how in his decision-making process, he took various concerns into account: recovery time, subsidiary options, the need to “take a break” from his medical trajectory, and job security. Ultimately, he balanced these concerns by waiting “to be truly free.”

Next to the pacing, clients stressed the importance of deciding on the order of interventions themselves. Tim, for example, shared:

I couldn’t have done it: start hormone treatment and only then have a mastectomy. For my process and the image I had in my head, it was crucial to have the mastectomy first and to start hormones later.

The HCP ought to have a coaching and/or expert role

While the above might suggest that clients seek a liberalized and informative client-clinician encounter, many respondents emphasized the importance of the role of their HCP as a “coach,” “guide,” or “expert” in decision-making. In the words of Daan: “I should’ve been able to decide for myself, but I didn’t want to be left alone in my process.” Tim expressed a similar sentiment:

I wanted to decide for myself, but also with [my MHP]. … To me, it was important that someone … with knowledge and experience wasn’t like, ‘I’m not so sure.’ … I really needed that back then, also for my family and others. … I didn’t need a ‘yes’ or ‘no’ [from my MHP], and he didn’t have to decide for me. That I also didn’t want. But I did need someone with experience to think along with me.

This quote illustrates how Tim holds various ethical norms regarding his MHP’s role. While he did not want his MHP to decide for him, he did value their help in navigating his family relations and potential pitfalls. Similarly, clients frequently mentioned the need to be informed by their HCPs to make good decisions. Finn, for example, said: “[T]hese [medical] steps are so major that I believe you really ought to be thoroughly informed about what it is you’re doing.”

The quotes in this theme underscore the diversity of clients’ needs, norms, and values concerning decision-making. Furthermore, they indicate that the normative conviction that clients ought to be in the lead may have various ethical and practical consequences for our respondents. An implicit ethical question is: How should GAMC account for clients’ diverse—and sometimes ostensibly contradictory—needs and norms regarding decisional pace, order, and roles?

Harm ought to be prevented, but who should be responsible?

Next to the conviction that clients should be in the lead in decision-making, all of our respondents expressed that harm should be prevented. Clients held diverging views, however, as to whether preventing harm, such as regret, should be (1) the role of the HCP, (2) their responsibility, or both.

Preventing harm should be the role of the HCP

Some clients opposed the notion of radical self-determination in GAMC and believed HCPs, particularly MHPs, should have a role in preventing harm. Dennis, for example, said:

I’m not a part of the movement that believes [TGD] people should have radical self-determination and that there should be no involvement of a psychologist. … A thorough screening, if only to see whether someone can manage the whole process and what their social support system is, is pretty useful. I’m really not against that.

To substantiate the ethical norm that HCPs should have a responsibility to prevent harm, they, like Sandra, often referred to the irreversibility of GAMC and the (emotional) hardship of living life as a TGD person:

Look, that’s why there’s a psychiatric screening. You want someone who can handle a transition. … [Y]ou see the number of suicides? Those typically happen about two years after the [GAMC] trajectory … because that’s when you’re confronted with your new life.

Some clients, like Tim, found the rigor of the diagnostic trajectory reassuring: “What I appreciated is that they [i.e., MHPs] did a fairly thorough background analysis to check if there weren’t any underlying psychological complaints. … So I knew, like, OK, it’s not that. I’m not crazy or something.” Later in the interview, however, Tim shared how his MHP’s commitment to preventing harm also proved to be burdensome in and of itself:

At a certain point, just before the surgery, my psychologist asked me, ‘Are you sure?’ Well, and then I lost it. I’ll never be sure! I can only be sure afterward. The only thing I can have is the trust and the will that this is the right way for me. Well, back then, I didn’t have the guts to say yes, … and ended up on a much longer waiting list because of it. … Look, I get that it [mastectomy] is something irreversible. But it also depends on who you’re asking that question that way.

These fragments raise an important ethical question: How should stakeholders weigh the intention to prevent harm against its burdens? To Daan, for example, self-determination trumps the principle of non-maleficence:

You’ll often hear the argument, ‘yes, but what if you’ll regret it?’ Sure, but there are very few who do. And I just don’t think it’s a good argument to limit people’s freedom of choice. So, more freedom of choice and self-determination are very important to me. … It all just feels a little belittling. … Yes, I believe trying to prevent regret is a lot more damaging than one person having it.

Clients should carry their responsibility to prevent harm

Most clients said they should (also) have a role in avoiding harm. Finn, for example, stressed how he had to be sure about his decision to start GAMC as the ramifications were serious:

When you tell your parents [about your wish to start GAMC], you have to be sure because it’s quite something. I only went to my general practitioner a couple of months later to get a referral [to a gender identity clinic] because, again, that’s something you only do when you’re entirely sure.

The quotes in this theme raise implicit ethical questions: How should the ethical commitment to preventing harm be navigated between clients, MHPs, somatic HCPs, and other stakeholders? Who should have what role and responsibility in defining, weighing, and avoiding potential harms such as regret?

The decision-making process should be attuned to the client, but what should this involve?

Clients stressed how the decision-making process should be more attuned to the individual client and their specific needs. Tim, for example, recounted various clinical encounters where he felt too little time and space to ask questions:

I’m someone that needs time. And I’ve had to adjust to the fact that you’re only granted 10 to 15 minutes [in a consultation], while I really have a hard time deciding in 10 minutes. I just need to ask more questions and, well, more time. So ideally, the appointments on the agenda of my treating physician are more flexible.

This fragment illustrates the role of time as a condition for sound decision-making. Tim’s implicit ethical norm here is that there ought to be adequate time and space for his and others’ decision-making processes to unfold.

Similarly, Noah was adamant in his conviction that the duration of the decision-making process should accommodate clients’ developmental needs and pacing; his normative assumption being that the latter is currently insufficiently accounted for:

Well, people never move too fast or hard. Everyone has their tempo, and you just don’t know where someone’s coming from. It really depends on someone’s character or personality. I’ve had people in my [support] group and friends who, woosh, passed me by in their transition. And then I’ve friends … who trail behind me because they’re even more careful than I am. In any case, it’s important to attune to whoever is sitting opposite you and where that person finds themselves developmentally.

Dennis, in turn, emphasized the importance of attuning to clients’ cultural backgrounds in deliberation:

A [Caribbean or South-American] man said, ‘I deliberately decided on phalloplasty because I’d asked my friends, and to us, it’s just important to have a large penis.’ … That means culturally mediated ideas about masculinity can profoundly impact someone’s choice for certain surgeries. … And they [i.e., HCPs] should at least talk to them [i.e., clients] about that. How important is it to [clients] themselves? Or do they just want something because they’ve received the cultural message that ‘this is masculinity.’ If we’re talking about making one’s own decisions [as a client], it’s unfortunate that it [i.e., the decision-making process] is solely focused on accessing treatment.

Here, Dennis highlights the potential impact of cultural values regarding masculinity on clients’ treatment wishes and stresses how the latter should be recognized, accounted for, and deliberated on in the decision-making process.

The quotes in this theme raise the following empirical and implicit ethical questions: to what extent do, or should, current work processes in GAMC accommodate the attunement of decision-making? What and whose values are, or ought, to be decisive in this process? What should be the limits of decisional attunement, if any?

Many of the above-described ethical challenges and norms regarding decision-making do not stand alone: they are specifically associated with the context of (1) a precarious client-clinician relationship and/or (2) distinct characteristics of GAMC. This is an empirical finding that we sought to accommodate theoretically and methodologically. To our respondents, decisional ethical challenges and norms are inextricably linked to the “context” they pertain to or manifest in and thus cannot be appreciated separately. In what follows, we illustrate this relation. We further reflect on the relationship between challenges and norms on the one hand and context on the other in the Discussion section.

Context: A precarious client-clinician decision-making relationship

Respondents particularly stressed the importance of and challenges in (1) open and transparent communication and (2) trust, honesty, and acceptance in relation to decisional ethical challenges and norms. Indeed, open and transparent communication based on trust, honesty, and acceptance emerged as contextual conditions for good decision-making.

Open and transparent communication

Many respondents stressed the importance of open and transparent communication in the client-clinician decision-making relationship. Dennis, for example, told how in the late 1990s, he found himself ill-informed and insufficiently involved in the decisional process:

The surgeon operating [on me] wasn’t very communicative and immediately decided that he was going to do a nipple reduction because ‘men have smaller nipples than women.’ That nipple reduction went wrong: … after the surgery, I got pretty severe scarring. Afterward, he said, ‘Yes, well, I’d expected that because you’re dark-skinned.’ [But], if you’ve known that all the time, why didn’t you say so? … Then, I would’ve made a completely different decision regarding my nipples!

Dennis’ ethical norms here are that the surgeon ought to have informed him about the potential outcomes of a nipple reduction and should have made his normative presuppositions (i.e., a man should have smaller nipples than a woman) more explicit. This fragment also illustrates how to Dennis, open and transparent communication concerning (one’s norms and values related to) treatment options and risks is a contextual prerequisite for good decision-making.

Likewise, Finn stressed the vital role of communication in establishing client-clinician rapport and trust: “[W]hat I would’ve wanted is reassurance. Like, ‘OK, listen, I can’t make any promises, but I can promise that it’ll be fine and you’re in the right place here.’ Some sort of trust, reassurance; something!”

Trust, honesty, and acceptance

The fragment above points to another critical ethical conviction shared by many respondents: to arrive at good decision-making, you need to know and trust your HCP. Dennis, for example, stressed the significance of an accepting and respectful stance on the part of the HCP to foster client-clinician trust and, ultimately, good decision-making:

[I]f you as a client have trust in your clinician and feel that you’re seen for who you are, and that that’s OK, and that there are no judgments; then you’ll also have more faith in that person [i.e., the HCP] being someone who can decide something that actually works for you.

Alternatively, Sandra conceived of client-clinician trust as a two-way street:

There are many negative stories about [a Dutch gender identity clinic], but I’m actually very satisfied, maybe because I’m always very open. They can ask me anything, even if I think it’s a lousy question. Answering them gives me a sense of trust that they’ll help me in their turn.

Similarly, Monique was adamant that clients must be honest with their MHPs: “I think it’s really bad [when clients withhold information]. People should be honest because hormones aren’t sweets.”

Most clients, however, expressed that they were unsure to what extent they could or should be honest with their MHP about their doubts concerning GAMC. Clients frequently found themselves in a double bind: to arrive at good decision-making, one needs to be able to talk honestly, but this might lead to undesirable (delays in) decisions. In Daan’s case, this led to moral distress:

Yes, well, I wasn’t able to have this conversation [about my desire to have children], while I really wanted to talk more about it. … But they [i.e., the MHPs] just said, like, ‘We advise against it. It’ll be very uncomfortable and not good for your mental health.’ You know, I get their point, but yeah. … I found that really complicated because my therapist also decided whether or not I could start my medical transition.

To navigate the tension between wanting to talk through doubts or other essential values concerning GAMC without jeopardizing access to it, Tim, Daan, and other respondents consulted another MHP to, in the words of Finn, “Feel free to talk about everything I was struggling with and how I was actually doing.”

The fragments in this subtheme raise various questions. An empirical one is: if clients share doubts, does this increase or decrease client-clinician trust? An ethical question is: should honesty always prevail, even when it produces effects that clients deem undesirable? Furthermore, they illustrate how open and transparent communication, based on trust, honesty, and acceptance, are contextual conditions for good decision-making.

Context: Distinct characteristics of GAMC

Furthermore, decisional ethical challenges and norms often manifested in or were related by respondents to (1) power differentials, (2) diverse conceptualizations of gender incongruence, and (3) shifting values concerning GAMC and decision-making.

Navigating power differentials

Respondents spoke of navigating decisional dependencies in GAMC, particularly the assessment of MHPs and (multidisciplinary) team discussions.

Many respondents related the hesitancy to share doubts to their dependency on MHPs for access to GAMC. Indeed, several described the decision-making process as an “exam” in which they had to convince their MHP of the need for treatment. Frouk, for example, said:

It feels like you’re working towards an oral exam. … Because you’ve got it [i.e., the need for GAMC] figured out for yourself, … but it remains stressful until you’re granted the ‘you’ve got the green light, you can continue.’

To some, like Julia, the experienced dependence changed after starting GAMC: “When I was making that decision about vaginoplasty, I didn’t feel all that pressure to jump through hoops anymore because I’d started treatment; I already had my hormones.”

Some clients, like Dennis and Daan, argued that the guiding and assessing roles of MHPs in the decision-making process should be separated. Others, such as Tim, did not object to their MHP’s role as “gatekeeper” but voiced ethical concerns about the required multidisciplinary team consensus:

I don’t necessarily have objections [against my MHP having to assess me and my request for GAMC], but I do object to it being done in such a big commission. Look, there might be a process behind it, but for me, it just took too long. For starters, I don’t know who’s in that commission. I think that if all those people present have to decide over me, they’re just wasting everyone’s time. If my [GAMC] psychologist says to me, ‘I’m positive,’ then why does it [i.e., my treatment request] need to go elsewhere?

Finally, some respondents felt their needs in decision-making were frustrated by clinical guidelines. Monique, for example, shared:

Of course, you know that there are international guidelines about how to do a trans person, … but are they still correct? … Because if you’ve been on hormones for twelve months and you’ve been OK’d for your surgery, and then you have to wait another two years, … that’s hell! … You want to be complete, to be done, and to continue life as a real woman!

Here, Monique described how clinical guidelines stipulating that clients are only eligible for vaginoplasty after 12 months of hormone therapy failed to do justice to a context in which waiting times for that procedure exceeded two years. Stressing the harrowing experience of not being able to live life as “a real woman,” she questions whether decision-making guidelines are ethically permissible.

Diverse conceptualizations of gender incongruence

Finally, clients linked their decisional ethical challenges and norms to diverse conceptualizations of what gender incongruence is or should be. Daan, for example, held the ethical norm that clients ought to be in the lead in decision-making because he takes gender incongruence to be something inherently subjective:

[I]t’s my decision to start a medical transition or not. … At the end of the day, I’m the only person who can understand what I feel, and no one else can decide for me whether I want to transition or not. And that’s the way it should be.

While generally subscribing to the view that gender incongruence is inherently subjective, others argued that MHPs should have a role in assessing it. Emma, for example, shared: “Well, if you’re gender incongruent isn’t easy to determine. You either feel it, or you don’t. Still, it’s good that a psychologist checks, like, is it truly the case?”

Conversely, Monique argued for a paternalistic approach to GAMC, as according to Monique, only MHPs can establish gender incongruence:

I can tell you that I suffer from gender dysphoria, but really, that’s up to you [i.e., the MHP] to decide. You’re the judge of that. You determine whether you continue [GAMC] with me. And then, of course, you want to be specific and decide whether or not it’s actually the case [that I suffer from gender dysphoria].

These fragments illustrate how clients relate numerous ethical norms regarding decision-making to divergent conceptualizations of gender incongruence. Daan made this relation particularly explicit:

I use testosterone gel. And I mean, that’s also prescribed to cisgender men who suffer from hormonal imbalance. … But when you’re trans, suddenly, that’s very complicated. … And I actually think that’s unfair. Like, I’m not ill or something. … You’d want some informed consent system in which you’re informed about the effects of hormone therapy but not obliged to go to a psychologist before you can start. … If trans people realize they’re trans—and I mean, we just are—then no one else has to assess whether that’s true or not. In my opinion, that’s a remnant of, well, gender dysphoria is a psychological condition.

In this quote, Daan links what he calls an unfair decisional process to the implicit conceptualization of gender incongruence as a condition that renders his competence questionable. To him, the value of justice and the principle of nondiscrimination correspond to the ethical norm that clinicians should provide hormone treatment regardless of their clients’ cis- or transgender status.

Clients’ shifting values relevant to GAMC and decision-making

Finally, respondents highlighted how values regarding GAMC and decision-making are contingent on myriad factors and thus may shift over time. Tim mentioned the impact of changing societal conceptualizations of gender diversity on his values concerning GAMC:

Some people know very clearly from the start what they want, but I want to say that a ‘no’ [regarding a specific intervention] may become a ‘yes.’ … Maybe it’s also because I identify as non-binary, and, well, I’ve grown up thinking I ought to fit in the woman’s box. And I’ve tried really hard, but I failed. There’s a lot of that I still carry with me. But the world’s changing. I think it’s really different if you’re transitioning around my age or when you’re a lot younger.

Julia related how growing older impacted her values regarding the decision-making process itself:

Look, at a certain stage, I wasn’t open to that [i.e., receiving psychological help] because I felt like I didn’t need it and that people shouldn’t meddle with me. But now I really appreciate that there’s someone meddling with my head.

A fundamental ethical question raised by these fragments is: How should decision-making in GAMC account for the notion that personal, professional, and socio-cultural values relevant to both GAMC and the decision-making process itself may shift over time?

Discussion

This study aimed to map and provide insight into adult TGD clients’ ethical challenges and norms regarding decision-making in Dutch GAMC. Our findings highlight a wide diversity of ethical challenges and especially ethical norms. Overarchingly, these may be formulated as (1) Clients ought to be in the lead, (2) Harm should be prevented, and (3) The decision-making process ought to be attuned to the client.

In what follows, we first consider the predominance of ethical norms, while this research set out to identify ethical challenges. Next, we reflect on our findings’ moral and contextual dimensions and provide implications for the dialogue regarding what good decision-making in GAMC entails. We end the paper by outlining limitations and directions for future research.

The predominance of ethical norms

While this qualitative interview study initially focused on ethical challenges, we found that our respondents were more inclined to relate ethical norms, i.e., of good and bad (aspects) of decision-making or views concerning what should be done to arrive at good decision-making. The latter is noteworthy, given that numerous empirical studies (e.g., Dewey, 2013; Gerritse et al., 2018; Vrouenraets et al., 2015) illustrate how those providing GAMC to TGD clients face myriad and diverse ethical challenges concerning decision-making.

It also raises the question of why TGD clients postulate ethical norms while HCPs speak more in terms of ethical challenges. We hypothesize that the relative absence of explicitly formulated ethical challenges by TGD clients may, in part, be due to the current polarized and politicized state of the discourse regarding decision-making in GAMC. The latter may have contributed to the solidification of normative positions and/or a reluctance to share ethical doubts, uncertainties, or dilemmas during the interviews.

The absence of explicitly formulated ethical challenges could also be seen as a consequence of client-clinician power differentials. In current Dutch GAMC, HCPs have to establish clients’ eligibility for treatment and thus carry a large part of the decisional burden and, arguably, ethical challenges (Gerritse et al., 2018). Conversely, TGD clients’ limited decisional agency may preclude them from experiencing ethical doubts or uncertainties and elicit ethical norms concerning (the role of the HCP/MHP in) decision-making instead.

The moral dimension of decision-making in GAMC

In the Findings section, we added and italicized the following ethical questions to clients’ ethical norms, i.e., (1) Clients ought to be in the lead, but what should this entail? (2) Harm should be prevented, but who ought to be responsible? (3) The decision-making process ought to be attuned to the client, but what should this attunement involve?

We did so to emphasize how clients’ decisional values frequently corresponded to divergent ethical norms and how their practical and ethical consequences regularly varied. These values and ethical norms thus require interpretation and explicitation. For example, all respondents shared a commitment to “self-determination” and “non-maleficence” but differed with respect to how these values ought to be weighed and how potential conflict between them should be dealt with.

Furthermore, our findings suggest that individual clients’ decisional values and ethical norms are dynamic rather than static and may be impacted by both time and GAMC. Indeed, clients’ decisional norms and values regarding, say, masculinizing hormone treatment and mastectomy may differ considerably. Furthermore, having a mastectomy may affect one’s needs and values regarding hormone treatment. We also illustrate how clients’ ethical considerations concerning decision-making regarding these interventions may shift. While our findings indicate that clients arrive in the consultation room with various needs, fears, and dynamic normative views regarding good decision-making, we also found that these are not regularly shared or deliberated on in the consultation room.

The contextual dimension of decision-making in GAMC

The notion that decisional needs, fears, and dynamic normative views often remain implicit can be better understood in the context of precarious communication, trust, and honesty in the client-clinician relationship. Indeed, TGD clients may face a double bind in decision-making where they fear being open and honest with their HCP potentially jeopardizes (the duration or outcome of) the decision-making process. Clients frequently described their HCPs as gatekeepers that had to be convinced, leading to mistrust, fear, and strategizing. In correspondence with Dewey (2013) and MacKinnon et al. (2020), our findings illustrate how this dynamic may have serious ethical consequences for the client-clinician partnership and the possibility of good decision-making as not all relevant information, values, and ethical challenges are taken into consideration and deliberation. This aligns with Clark et al. (2021), who qualitatively identified “agreement regarding what decision is at stake,” “deliberation of decisional roles,” “open communication,” and “supportive relationships” as conditions for successful shared decision-making in GAMC with transgender youth.

Furthermore, we described how clients relate their ethical norms concerning decision-making to diverse conceptualizations of gender incongruence. For example, some considered mandatory consultations with an MHP in the context of decision-making in GAMC unfair as they do not consider gender incongruence a mental health condition. In line with Ashley (2022) and McQueen (2017), other respondents invoked the subjective and epistemically inaccessible nature of gender incongruence to substantiate claims for more decisional self-determination. Contrarily, some referred to gender incongruence as a (mental health) phenomenon which ought to be differentiated to argue that the role of MHPs in diagnosis and decision-making is necessary and ethically warranted. These divergent conceptualizations echo a broader socio-cultural context in which gender incongruence is currently classified as both a mental disorder (i.e., Gender Dysphoria) by the American Psychiatric Association (2022) and a condition related to sexual health by the World Health Organization (2018).

Staying with the inherent moral and contextual struggle

Taken together, our empirical findings stress the inherent moral and contextual dimensions of good decision-making in GAMC (Gerritse et al., 2018, 2021; Hartman et al., 2019; Vrouenraets et al., 2020). The diversity, complexity, and temporally contingent character of clients’ ethical norms regarding decision-making imply that there is no single “ideal” decision-making model for GAMC. This underscores the need to diversify and explicitly attune decision-making to the specific client and context, time and again. Moreover, the notion that these dimensions are inherent implies that stakeholders’ norms and values will continue to differ and will likely give rise to ethical challenges. Rather than seeking to “solve” these ethical challenges or conflicting norms, we argue that stakeholders ought to take them seriously as they are indicative of what values are at stake for whom (Gerritse et al., 2021). In fact, “staying with the moral struggle” through recognizing such inherent challenges and making them more explicit may aid in better understanding and handling them and foster good decision-making.

The above resonates with hermeneutic ethics and philosophical pragmatism (Hartman et al., 2020). According to these schools of thought, norms and values are not doctrines but instruments that attain meaning within the practices they are put to use. They thus require interpretation and application to a specific situation (Hartman et al., 2020). Seen through this lens, the diverse and dynamic nature of clients’ decisional values and norms is not surprising or problematic but the consequence of clients reconsidering their moral presuppositions and convictions in light of the particular decision and situation at stake (Hartman et al., 2020). Furthermore, pragmatism and hermeneutics emphasize that morality is contextual; it is “intimately concerned with the timely, the local, the particular and the contingent” (Abma et al., 2010, p. 245). The latter implies that good or right decision-making cannot be established without considering its specific content and contextual characteristics in this study, practice, and beyond.

Establishing good decision-making in GAMC thus necessitates an openness toward what good decision-making may entail for these stakeholders in this context at that moment. Indeed, all stakeholders in GAMC may benefit from acknowledging that there is no single “ideal” model of good decision-making in GAMC. The impetus to establish such an “ideal” model may paradoxically impede the open and constructive dialogue necessary to arrive at good decision-making. Therefore, we argue that the first steps toward good decision-making are to elucidate and jointly deliberate on clients,’ clinicians,’ and other stakeholders’ values and normative assumptions regarding the decision-making process and acknowledge that these may differ.

Limitations and directions for future research

This study is not without limitations. First, although this study’s qualitative and retrospective nature allowed for an in-depth exploration of TGD clients’ ethical challenges and norms regarding decision-making over time, it is also susceptible to recall and hindsight bias (Green & Thorogood, 2018). Therefore, we encourage prospective qualitative investigations into TGD clients who actively engage in decision-making or seek GAMC.

Second, we should note that we included a limited sample and that all respondents received GAMC in Dutch institutional contexts where guidelines are based on WPATH’s SoC7 at the time of research and writing (Coleman et al., 2012). Our findings should therefore be contrasted with those of clients receiving care under different contexts and service delivery models, including SoC8 (Coleman et al., 2022) and those emphasizing informed consent (Schulz, 2018). Likewise, it would be worthwhile to elucidate the ethical norms and challenges of people who engaged in decision-making but decided not to seek or discontinue GAMC.

Finally, it is worth noting that this study descriptively mapped and explored TGD clients’ ethical challenges and norms regarding decision-making in GAMC without the ambition to settle or judge them normatively. The latter is in line with our pragmatic and dialogical perspective on ethics and CES, which stresses moral learning through dialogue and joint critical engagement (Hartman et al., 2019; Widdershoven et al., 2009). In this light, it is worth noting that TGD clients indicated the need for a product in the consultation room to make (norms and values regarding) the decision-making process and decisional roles more explicit. The findings presented in this paper provide empirical input for dialogue sessions with HCPs and TGD clients in which we will co-create an ethics support tool to foster good shared decision-making in GAMC. We hope this paper and (the development of) this tool will contribute to a constructive dialogue in which the relevant context, ethical norms, and challenges may be shared among the stakeholders involved.

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).

Additional information

Funding

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

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.