Experiences of surgery readiness assessments in British Columbia

Abstract

Background: A surgical readiness assessment is a major step in the medical journey of trans people seeking gender-affirming surgery. Much of the peer-reviewed literature surrounding surgical readiness assessments emphasizes the perspectives of academics and clinicians, leaving the voices of trans and gender diverse patients largely unheard.

Aims: This paper foregrounds patient experiences with surgery readiness assessments to discuss the tensions, challenges and opportunities they generate.

Methods: We conducted a thematic analysis of 35 in-depth interviews with trans people who accessed or were seeking to access gender-affirming surgery in British Columbia.

Results: We developed three main themes to capture participants’ narratives of their surgical assessment experiences. The first, assessments as gatekeeping, explores the stories of people who described their assessments as outdated and even discriminatory processes. The second, assessments as a barrier to care, discusses the informational missteps, bureaucratic regulations, economic issues, and geographic concerns that made assessments difficult to access. The third, assessments as useful, includes positive stories about assessments that often involved feeling supported by an assessor and feeling prepared for the next steps.

Discussion: These narratives demonstrate how much variation exists among people’s experiences of readiness assessments for gender-affirming surgery. No matter how their actual assessment turned out, many participants approached their appointments with a great deal of anxiety and trepidation. We attributed this stress was to challenges ranging from lengthy wait times, arbitrary medical gatekeeping, a lack of access to knowledgeable and supportive providers, unclear or changing administrative processes, and insufficient communication. To address these challenges, it is crucial for the medical system to create more accessible pathways with centralized, up-to-date information for people trying to access assessments. Patients are best served by multi-disciplinary gender-affirming teams that provide individualized care.

Introduction

In Canada as well as the United States, undergoing a surgical readiness assessment is a major step in the medical journey of transgender (trans) people seeking gender-affirming surgery. Currently, surgeons and some insurers require healthcare professionals to conduct assessments in order to ensure patients’ readiness for surgery (Budge & dickey, 2017; Eley, 2018). Assessors - who have historically been psychologists or psychiatrists, but can also be primary care providers - often discuss the following subjects with patients: gender identity and feelings about their bodies; expectations and understanding of surgery (including associated risks and the post-operative healing process); health histories; support networks and strategies for integrating their changing gender expression in a range of social settings; and their surgical aftercare plan (Trans Care BC, 2019). This step is meant to ensure that patients meet the criteria for surgery outlined in the WPATH SoC (World Professional Association for Transgender Health Standards of Care; Coleman et al., 2012¹). Patients typically begin the process through their primary care provider, who can refer them to a qualified assessor or provide an assessment themselves if they are qualified to do so. Individuals can also self-refer if they are paying for the assessment privately. The WPATH SoC are clinical guidelines that inform health professionals in their treatment and care of trans and gender diverse people. Although the SoC permit individualized approaches, their criteria for accessing gender-affirming surgery is that a patient has a diagnosis of persistent gender dysphoria by a qualified mental health professional; that they are making an informed decision and have the capacity to consent; that they are the age of majority; that any major medical or mental health concerns are well controlled; and, in some cases (i.e., when it has been clinically indicated, or in the case of genital surgery), they have been on hormone therapy and/or living in a gender role aligned with their gender identity for 12 continuous months (Coleman et al., 2012: p. 106). While WPATH designed these criteria to protect patients and medical professionals, the SoC and the surgical readiness assessment process in particular have generated significant debate regarding their necessity and relevance in an era of patient-centered care (see Bouman et al., 2014; Bockting et al., 2006; Hale, 2007; Selvaggi & Giordano, 2014; Toivonen & Dobson, 2017). Much of the peer-reviewed literature surrounding surgical readiness assessments is quantitative and emphasizes the perspectives of academics and clinicians, leaving the stories of nonacademic trans and gender diverse patients largely unheard. This paper addresses this gap by focusing on patient experiences with assessments in the context of accessing gender-affirming surgery. We begin by historicizing assessments, contextualizing them as part of the fraught relationship many trans and gender diverse people have with medical and mental health providers (see dickey & Singh, 2017). We then present a thematic analysis (Braun & Clarke, 2006) of the assessment experiences of trans and gender diverse participants, who framed their experiences as: 1) a form of gatekeeping, 2) a barrier to care, and 3) a useful process. Drawing on the tensions, challenges and opportunities suggested by their narratives, we end by offering some suggestions for how assessment practices can shift to better support the provision of gender-affirming surgery.

Setting context: Transphobic frameworks in trans health

Trans health emerged as a field in the mid-20^th century, when endocrinologists like Dr. Harry Benjamin began to challenge the notion that trans identities were forms of perversion or deviance (Frey et al., 2017, p. 992). This early work led to the creation in 1979 of the Harry Benjamin International Gender Dysphoria Association (the predecessor to the modern-day WPATH), which helped publish an initial version of the SoC to offer clinical guidelines for the treatment of “transsexualism” or “gender dysphoria.” The term of “gender identity disorder” first appeared in the 1980 Diagnostic and Statistical Manual of Mental Disorders (DSM; APA, 1980; Beek et al., 2015), shifting back to “gender dysphoria” in 2013 in order to avoid the stigmatizing implications of the word ‘disorder’ (Pierceson, 2015, p. 140).

The early development of trans health care shifted the conversation away from framing trans identities as deviant and helped create pathways for trans people to access gender-affirming care, particularly in terms of medical interventions. However, the language of disorder and diagnosis in the SoC and the DSM continued to pathologize trans experience as a mental disorder. Grounded in psychiatry, this approach gave mental health providers the power to legitimize a person’s trans identity and authorize their eligibility for gender-affirming hormonal and surgical care. Assessment processes became a primary tool for mental health professionals to diagnose the nature and severity of both the patient’s “disorder” and their mental stability in order to determine who would receive gender-affirming medical interventions.

By the latter half of the 20^th century, trans activists and scholars began challenging this approach to trans health by calling for the depathologization of trans identities (Burke, 2011; dickey & Singh, 2017; Spade, 2015). Building upon women’s, LGB², and HIV/AIDS movements challenging the legal and medical control over bodies, trans liberation movements have questioned how dominant norms of gender and sexuality have pathologized trans identities while restricting access to health care. As various forms of resistance to medicine and psychiatry’s control over gender-affirming medical interventions suggest, the question of whether and how they should be involved in trans health remains complex. Burke (2011) notes, “the transgender population continues to struggle with institutions of medicine, psychology, and health insurance over the right to access transition-related treatments for those who desire them” (p. 202). Over time, the WPATH SoC have evolved to reflect changing understandings, but tensions remain when it comes to the role of assessments in accessing gender-affirming surgery.

Assessments for gender-affirming surgery: Questioning paternalistic gatekeeping

Numerous critiques have been formulated about assessments that are mandated as part of the process to access gender-affirming surgery. At a fundamental level, critics argue that assessments are discriminatory against trans and gender diverse people. Few other surgeries require this level of psychological scrutiny (Bockting et al., 2006; Budge & dickey, 2017), suggesting a double standard for patients whose surgical requests counter gendered norms (Latham, 2013, p. 648; Murphy, 2016, p. 1081). Others have pointed out that by questioning a transgender person's autonomy to modify their own body, assessments infantilize adult patients by presuming that they cannot decide the risks and benefits of surgery for themselves (Bouman et al., 2014, p. 383; Hale, 2007, p. 502). Bouman et al. note that the idea of “saving patients from themselves” (2014, p. 383) has become outdated in other areas of medicine (Department of Health, 2004; Little, 2001; Stewart, 2001), and concerns over risk and harm should override autonomy only when the evidence is clear (Toivonen & Dobson, 2017, p. 184). Critics also argue that assessments have worked as a form of medical gatekeeping, forcing patients to “prove” their trans identities to their assessors in order to access medically-necessary care (Collazo, Austin & Craig, 2013, p. 234). This approach can cause patients to view assessments as an adversarial, bureaucratic, delegitimizing, and disempowering process (Bockting et al., 2006; Collazo et al., 2013, p. 234), undermining the open and trusting therapeutic relationship required for effective care (Barker & Wylie, 2008, p. 123). Despite these critiques, some continue to be proponents of assessments. Rather than viewing assessments as limiting autonomy or being paternalistic, proponents see them as providing a duty of care for surgeries involving intense alterations to one’s body. They often cite bariatric surgery as an example of a procedure requiring similar psychological oversight (Lev, 2009, p. 74; Selvaggi & Giordano, 2014, p. 1182). Such comparisons however, do not account for gender-affirming surgery’s unique status as a procedure that is key to some people’s authentic expression and sense of self. Proponents of assessments also argue that assessments are a safeguard against the potential harms caused by post-surgical regret (Bouman et al., 2014; Cavanaugh et al., 2016; Lev, 2009; Selvaggi & Giordano, 2014; Toivonen & Dobson, 2017; Worth, 2018). However, gender-affirming surgeries have very low rates of regret (Wiepjes et al., 2018; Worth, 2018) and there is little evidence to support a direct relationship between assessments and patients’ post-surgical outcomes (Cavanaugh, Hopwood & Lambert, 2016). Although the SoC acknowledge the risks of persistent dysphoria and denial of access to treatment (Coleman et al., 2012, p. 199), discussion regarding risk tends to obscure or overshadow the benefits. In particular, proponents rarely discuss how the assessment process itself may also unnecessarily delay or deny access to surgery, and the risks that this may represent in terms of negative impact on mental health resulting from gender dysphoria, Given evidence suggesting that gender-affirming medical interventions (both hormone therapy and surgery) have positive effects on mental health and quality of life (Agarwal et al., 2018; van der Grift et al., 2017; Wernick et al., 2019; White Hughto & Reisner, 2016), there is a need for a more balanced and evidence-based view of risks and benefits when it comes to assessments and gender-affirming surgery, including better tools to measure changes in quality of life (Alcon et al., 2017). It may also be worth considering whether the tendency to emphasize the potential risks, such as dissatisfaction or regret, over its potential benefits, such as greater mental health and lower levels of dysphoria, may be partly explained by the fact that the vast majority of medical professionals and scholars in the field of trans health have historically been cisgender, and their lived experience may lead them to overestimate the former while underestimating the latter. In response to critiques of the SoC and their reliance on assessments – especially those focusing on diagnosis and psychological factors – some have proposed a shift to a model of care premised on informed consent (Schulz, 2018). The informed consent model takes a “client-centered approach that balances individual needs within a harm reduction philosophy” (Cavanaugh et al., 2015, p. 4). It is promoted by some trans healthcare facilities in the United States (e.g., Fenway Health, Callen-Lorde, Tom Waddell) as well as organizations in Canada (e.g., Rainbow Health Ontario, Trans Care BC) and beyond (e.g., Trànsit in Spain). It privileges patient autonomy and agency, providing the patient with all the necessary information and reasonable options that will help them decide what care they may choose. While WPATH SoC places greater importance on the role of the mental health provider in evaluating and authorizing access to surgery, informed consent models do not involve them unless the patient requests it or there are serious health issues that require attention before the process begins (Coleman et al., 2012, p. 36). Mental health providers may still be involved in trans patients’ journeys to gender-affirming surgery, but the role of all providers shifts from evaluating patients and authorizing access to care to supporting patients with decision-making and recovery (Keo-Meier & Ehrensaft, 2018). Although the scholarly literature illuminates some of the tensions surrounding assessments for gender-affirming medical interventions, two notable areas remain under-examined. The first concerns patients’ perspectives. Although there are some first-person narratives about the process (see Spade, 2003; Wilchins, 1997) and quantitative reports (Alcon et al., 2017; van der Grift et al., 2017), few qualitative studies focus on patients’ experiences with surgical assessments (for a notable exception, see Waszkiewicz, 2006).³ Second, much of the literature discusses assessments in the context of hormone replacement therapy (HRT) rather than surgery. Little is therefore known about the assessment experiences of people seeking gender-affirming surgery, especially in the Canadian context. This paper fills this gap by asking how trans and gender diverse patients talk about their surgical assessment experiences, how these experiences reflect the tensions explored in the scholarly literature, and what patients think should be done to improve care.

Methods

Research team

This project is a result of a partnership between the research team and Trans Care BC (http://www.phsa.ca/transcarebc), a government-funded program coordinating and enhancing British Columbia’s delivery of trans health services. The research team included professors, clinicians, research associates, postdoctoral fellows, and research assistants, some of whom have lived experience as trans, non-binary and gender-nonconforming people. We also consulted with a province-wide peer reference group composed of trans community members.

Recruitment, sampling, & eligibility

Between August and October 2016, we recruited 35 trans people who had completed at least one gender-affirming surgery and/or surgical readiness assessment in the last five years in British Columbia. We invited respondents from our concurrently-running survey on gender-affirming surgery (Frohard-Dourlent, Coronel-Villalobos & Saewyc, 2017) to provide contact information if they were interested in a follow-up interview. We also advertised the study on social media, in community organizations, and on websites targeting trans and/or LGBTQ + people, inviting those interested to contact us directly. We used a purposive sampling method to locate participants and increase diversity, with more success in some areas than others (see below). Our goal was to ensure that our sample included a range of experiences with surgical assessments—positive, mixed, and negative.

Participant demographics

Our sample of 35 participants were between the ages of 24-69, with all them identifying as trans or gender diverse (i.e., genderqueer, non-binary, androgynous). Although we successfully recruited a wide range of participants across gender identities and geographic settings, we were less successful at recruiting racial and ethnic minority participants. This may reflect the demographics of the research team as well as the specific barriers racialized trans and gender diverse people face with respect to healthcare access and study participation. Although this makes it difficult for us to meaningfully report on differences in experiences and outcomes based on ethno-cultural background, it does not mean that differences do not exist. The tables below provide additional details about the demographics and diversity of participants (Tables 1–7).

Table 1.

Age of participants.

18-30	6	17.1%
31-54	20	57.1%
55+	9	25.7%
Total	35

Table 2.

Gender identity of participants.

Transfeminine	19	54.3%
Transmasculine	13	37.1%
Non-binary	8	22.9%
Total*	40

Table 3.

Race/ethnicity of participants.

White	30	85.7%
Asian and Eurasian	3	8.6%
Indigenous	2	5.7%
Total	35

Table 4.

Location of participants.

Vancouver/Lower mainland	13	37.1%
Vancouver Island + Gulf Islands	17	48.6%
North + Interior BC	5	14.3%
Total	35

Table 5.

Employment status of participants.

Full-time / self-employed	19	54.3%
Part-time	2	5.7%
Unemployed / on disability or medical Employment Insurance	8	22.9%
Student / retired	6	17.1%
Total	35

Table 6.

Status of care of participants.

Assessment only	9	25.7%
Assessment + surgery	26	74.3%
Total	35

Table 7.

Types of surgeries undergone by participants.

Lower surgeries	19	54.3%
Chest and other surgeries	12	34.3%
n/a (assessment only)	9	25.7%
Total*	40

^*Participants could select multiple options.

Procedures

Data collection

We collected data using qualitative interviews. A style well-suited for exploratory research, in-depth interviews are often retrospective accounts that provide context, probe how people feel about situations, and inquire about what people wish could have happened differently. Interviews were approximately 60-90 minutes in length, and we used a standard in-depth style where participants tell their stories and interviewers ask questions to direct the conversation toward the specific goal of inquiry (Holstein & Gubrium, 1995; Lofland & Lofland, 1995). Most interviews took place in-person, although we conducted three interviews over Skype. Members of the research team also traveled to interview participants living outside of the province’s main urban region. With permission, we audio-recorded all interviews.

Results

We developed findings using thematic analysis, a qualitative research method used to identify, analyze, and report patterns (Braun & Clarke, 2006, p. 79). First we familiarized ourselves with the data (2006, p. 87) by reading through the interview transcripts repeatedly and noting down initial ideas, meanings, and patterns. We then discussed our initial impressions and, using both an inductive and theoretical approach, generated a series of analytic codes we developed from reading the data (inductive) and from personal experience and/or the scholarly literature (theoretical). After developing the main codes, we sorted them into potential themes and collated relevant coded data extracts. We then reviewed our themes to ensure they were relevant to the coded extracts and the entire data set, using them to generate an analytic “map” visualizing the connections between codes and themes, and discussing them in order to refine them further. This iterative process sometimes resulted in extensive re-coding and re-mapping until we agreed on its final form, which helped us deepen our understanding of the themes, their connections, and the overall narrative that we represent in the table below (Figure 1).

Figure 1.

Overview of main themes and subthemes.

We developed three main themes to capture participants’ narratives of their surgical assessment experiences. The first, assessments as gatekeeping, explores the stories of people who described their assessments as outdated and even discriminatory processes. The second, assessments as a barrier to care, discusses the informational missteps, bureaucratic regulations, economic issues, and geographic concerns that made assessments difficult to access. The third, assessments as useful, includes positive stories about assessments that often involved feeling supported by an assessor and feeling prepared for the next steps. Together, they demonstrate how much variation exists among experiences of readiness assessments for gender-affirming surgery.

"It’s not so much a gatekeeper model, but there are still vestiges of that”: Assessments as gatekeeping

Many participants in this study described surgical assessments as a form of gatekeeping where healthcare professionals have the power to (dis)allow access to surgery. Although some participants spoke about assessments that occurred at least five years ago (and sometimes even earlier), some of them occurred more recently.

Assessments as an outdated and irrelevant process

Describing assessments as a series of “hoops” they needed to jump through, some participants described their assessors’ questions as tangential and silly—particularly those related to gender identity. They sometimes described them as counter-productive, with Matthew⁴ observing:

I don’t think those questions actually address what they’re actually trying to get to the heart of anyways.

One reason that participants may have perceived these questions as intrusive and irrelevant is that their assessors were often people hitherto unknown to them. In the case of Jessica, who described her assessment experience as “really pointless” and irrelevant to her surgery, she asked:

Why is this considered a necessary step? Why is this person who knows, like, nothing about me and only sees me for a half hour considered a better authority on my healthcare than the doctor I’ve been seeing for two years?

Some participants also viewed the need for two assessments for lower surgery – the current standard in Canada and a WPATH criteria – as excessive. Cass described it as an “intentional roadblock” to discourage people from accessing gender-affirming surgery “rather than […] making sure that it’s something that they are medically ready for, medically necessary.” In all these cases, participants viewed the assessment as an unnecessary, outdated requirement.

We connected participants’ perceived irrelevance of assessments to their frustrations with assessors who lacked trans competency. This feeling was especially common among participants uninterested in a binary transition from one gender to “the other” (see also Clark, Veale, Townsend et al., 2018). For example, one non-binary participant, NJ, shared how their decision to discontinue HRT while pursuing upper surgery initially led their assessor to misinterpret it as a sign of uncertainty and future regret. Although this assessor eventually understood NJ’s decision, NJ’s recounting of the experience indicated that they had to display a level of confidence and self-advocacy that may be challenging for some patients in a potentially intimidating clinical encounter—especially for those with lower English proficiency. We understood this kind of misunderstanding to be related to outdated knowledge that does not account for non-binary genders (Lykens et al., 2018). In a system where assessors have the power to deny access to surgery, a lack of knowledge about gender diversity beyond the binary can (sometimes unintentionally) enable gatekeeping; research suggests that this is linked to foregone care for non-binary patients (Clark, Veale, Greyson et al., 2018).

Power asymmetry undermining care

Participants who talked about assessments as gatekeeping also discussed how the power asymmetry inherent in assessments can undermine any therapeutic benefits by creating a situation privileging compliance over care. We interpreted this power asymmetry as explaining why many participants experienced the assessment as “stress/stressful” (Lauren), “nervous/nerve-wracking” (Ash), and even “panic-inducing” (Cass):

There’s always that anxiety that exists when someone is a bit of a gatekeeper for you in getting what you need for healthcare (Ben).

I was a nervous wreck, of course, thinking the whole time, you know, ‘what if I’m denied, what if I’m denied?’ (Blake).

This anxiety was especially common for patients who described feeling that they might not get a surgery referral if they did not follow a particular script (whether this impression was accurate or not). Fueled by participants’ perceptions of assessors as gatekeepers and trans communities’ historical distrust of medical institutions, this anxiety sometimes worked to reinforce the notion that participants must say a “set of things” in order to “get the gatekeeper to open the gate” (Matthew). Jessica, who described herself as “[fitting] pretty well into the sort of archetypal trans woman narrative,” observed that there’s a “very expected narrative” of being “a woman trapped in a man’s body” that even made her begin to shift her own story to fit this model. Matthew echoed a similar experience, describing himself as “[saying] all of the right things” even when they were not relevant to his lived experience. He too adopted the ‘trapped in the wrong body’ narrative, admitting that although it was inaccurate, he “didn’t want to leave anything up for chance.”

Participants who felt pressured to tell assessors “what they wanted to hear” (Raquel, Jessica) often admitted to embellishing, withholding, or self-censoring during their assessments. The fear of rejection led some to omit specific details in case assessors used it to label them as not ‘truly’ trans or as ‘unfit’ surgical candidates. Examples included sexual orientation (“I was very aware that I probably shouldn’t say I was gay,” Jay noted) or mental health history and status. Taylor recalled “[softening] the edges of this truth about experiences with depression,” while Jessica disclosed that she “would have lied” if she had been feeling suicidal, adding that “when you’re going in and there’s sort of that checklist feeling, like, there’s no reason to be honest.”

We understood these fears to encouraged a type of coercive co-operation. Lauren described a stressful assessment experience where an assessor pressured her into agreeing with their interpretation of her life story:

“I could just feel this pressure, almost a physical pressure as [my assessor] was stepping into my space and leaning over me”.

Although she felt tempted to assert herself, her fear of being denied access to surgery left her feeling “too intimidated to say much of anything.” Raquel expressed a similar sentiment, noting that “trans folks do not have the agency to do that advocating for themselves because we’re terrified of that meaning we’ll get a no.”

Some participants were aware that this set-up—the assessment as a gatekeeping mechanism and the dishonesty that it generated—could have negative consequences. “I didn’t really have an honest conversation, and frankly that would have been really helpful,” Matthew told us. “It was sort of this… like, hoop I had to jump through, but not one that actually benefited me.” When patients feel they must please their assessors, both patients and clinicians miss out on the opportunity to identify and address questions, concerns and health needs.

Assessments as discriminatory

A number participants who viewed assessments as a form of gatekeeping also discussed them as being discriminatory and transphobic. Raquel described it as “a real statement about the lack of agency that trans people have in their own medical care that our government feels that trans people need protection from themselves.” For her, putting decision-making power in the hands of health care professionals rather than patients implied that trans people cannot be trusted to make decisions about their own bodies. Some participants juxtaposed their experiences with those of cisgender people seeking elective surgeries to emphasize unfair treatment. “Non-trans people are allowed to make alterations to their body as they please without being told that they need protection from themselves,” Raquel said, before explaining that cisgender women with breast cancer or hormonal imbalances seeking breast augmentation do not require assessments. Another participant, Lauren, compared gender-affirming surgery to the situation of seeking abortion: “That’s a huge decision,” she said. “But [the person] has that right. [They] can sit down with [their] G.P. and [they] can make that decision and it will happen. But a trans person doesn’t have that right.” Markus also compared himself to cisgender men seeking surgery to reduce the size of a large chest, noting that a doctor would likely approve it while questioning a trans person’s psychological readiness. Participants often contrasted the experience of assessments as gatekeeping mechanisms with their expectations of informed consent in health decisions. As Alicia said, “it definitely feels like you’re being singled out for something that should just be informed consent. Not these sort of, tiers of, ‘are you really sure? Are you really, really sure?’” Others, such as Lauren, expressed similar sentiments:

“I still have trouble with this whole notion that informed consent applies everywhere but to people who are trans. And this notion that I might regret my decision is nonsense.”

Among those who criticized the gatekeeping aspect of assessments, many perceived assessors’ questions regarding regret as another example of subtle transphobia. Raquel told us that the “fear of regret is—just [didn’t] add up” because the same standards did not apply to cisgender people wanting to alter their bodies. Matthew echoed this impression:

We only f****** do this for trans people. […] I could go get a nose job tomorrow and not have to prove that I’m going to regret it later, not going to regret it later…the whole process is bullshit. I think it’s transphobic, and I don’t think it actually does what it’s intending, which is really support people through the process.

Devon discussed regret in the context of fertility, reminding us that reproduction is not a priority for everyone. “I’m not interested in having children,” he remarked, “I don’t understand, like, what the difference is ‘cause, like, oh, it’s my body. I can take out whatever I want.” For these participants, questions about regret reflected the assumptions and priorities of health care professionals. Because these participants saw this line of questioning as undermining trans peoples’ agency, it also undermined for them the possibility of seeing health care providers as playing a supportive role.

"It’s been a lot of legwork on my own": Assessments as barrier to care

Even participants who did not talk about assessments as a gatekeeping mechanism often identified assessments as a barrier to care. Below, we expand on the two sub-themes associated with this theme: confusion and accessibility.

Assessments as a confusing process

Participants often discussed assessments as a time-intensive and murky process that delayed access to care. Their “very opaque” (Cass) or “very, very hidden” (Raquel) nature often confused participants. Participants discussed the difficulty of finding accurate information beforehand, with some reporting that their primary care providers supplied them with incorrect information about self-referrals. Taylor described this experience as one of being “caught in the system” which resulted in informational “dead ends.” Alicia reported it was “next to impossible” to establish a timeline or ascertain her position on a waitlist, even after securing her assessment appointment. Post-assessment, many still reported experiencing uncertainty regarding the process. A few participants reported lost paperwork, while others recalled endlessly following up to ensure they had not been forgotten or “dropped off the list” (Cass). The lack of communication and limited information regarding process—including expected wait times—left many people feeling confused and frustrated. Delays were particularly discouraging for people whose assessment appointments did not lead to a recommendation for surgery. Whether that involved discovering that an assessor was actually unqualified (Taylor) or that a preexisting physical condition made a patient too high-risk for surgery, these scenarios generated “a lot of time and stress and being on waitlists and having to jump through hoops” (Sage). This can be very discouraging for patients. Consider the experience of Markus, who was disqualified from surgery due to his weight:

Misinformation at that point ends up being a whole lot of wasted time which for people who, you know, are really struggling with just existing in their body, it’s like that’s critical. Waiting six months to see someone to be told that you’re too fat to have surgery with them, you know, is a big deal.

The negative psychological impact of delays and misinformation Markus highlighted was a recurring theme. With “so much emotionally and mentally involved” (Nelson) in accessing gender-affirming surgery, misinformation and delays turned some participants’ assessments into a mysterious process that did little to help them feel psychologically prepared. A few participants even shared with us how the uncertainty and frustration associated with the assessment process affected their mental health, with Zach characterizing it as “really rough…one of the roughest experiences of [his] life” and Markus describing it as “actually a really bad experience for [his] mental health.” These experiences demonstrate the consequences patients experience attempting to navigate systems where delays and misinformation is common. A lack of clarity regarding the purpose of surgical assessments also exacerbated participants’ confusion. Some expected the assessment to help them better understand and prepare for surgery, expressing disappointment when they perceived their assessor as inadequately readying them (Matthew) or answering their questions (Alicia). This became particularly salient for Jay, who complained that his assessor spent too little time discussing the “ramifications of having surgery” in terms of possible emotional impacts and post-surgical results. Such interactions raise questions about whether mental health (i.e., non-medical) providers are best positioned to act as assessors given that patient preparedness often means that patients are seeking accurate medical information such as information about surgery complications, recovery, or outcomes. This uncertainty did not end with the assessment, but also characterized the wait between assessment and surgery. As Matthew told us:

Once you get approval, the process from there needs to be much clearer for people so that they can not only plan their lives, but plan their mental wellbeing…To give people just, like, kind of nothing, I think it makes it very hard for people to decide if they can handle it.

For some participants, the confusion about the assessment process’ purpose, format, and timeline was not only disappointing but counter-productive when participants shared leaving these appointments feeling still unprepared for surgery.

Assessments as inaccessible

Finally, participants frequently discussed how assessments created additional delays for those with limited economic means and/or those who lived far away from major cities. Although assessments are publicly-funded in British Columbia, there have historically been a very limited number of qualified assessors. Furthermore, many of them have been primarily located in the provinces’ major urban centers. While Trans Care BC is now working to increase the number of qualified assessors and their availability across health authorities, this previous reality meant that participants in this study encountered lengthy wait times and had limited options. To bypass long waitlists, some participants paid out of pocket—which sometimes came at a significant cost. Those without private insurance reported spending hundreds of dollars—more than a month’s rent for one participant— on the appointment and administrative fees associated with obtaining a letter from a mental health professional. Those who had to work and save up in order to be able to afford these costs experienced further delays. Geographic location was another barrier that created delays (see Sansfaçon et al., 2018). For those living in less-populated regions, smaller community size combined with the paucity of trans-specific services often leaves people with reduced local options. This means that some travel considerable distances to their assessments. It “took a while” for Lauren to find the only locally-available assessor in her region, while Zach reported traveling many hours to get to his assessment appointment—an option that may not be available for others without the same financial means or social networks. Participants were often aware of how socio-economic privilege, insider knowledge, having the right contacts, or even sheer luck had helped them overcome or avoid certain barriers. “It was hard. It was hard,” Matthew told us, despite his relatively privileged position. He explained:

So I consider myself to be a fairly competent individual. I work in healthcare. I know people in healthcare. I know how to navigate large systems. And it was super fucking complicated. And that made me concerned for myself, but it also made me think, like, how are people managing through this who don’t have the level of privilege and support that I have? If I’m struggling this much, like, there’s a lot of people that are really having a hard time with this.

Many shared Matthew’s view that system navigation required many skills and resources, disadvantaging those without similar levels of privilege. Even among those who described their assessments in positive terms, it was generally accepted that assessments were often inaccessible and that the process impeded people’s access to medically-necessary care.

"Not just questions, but it was more like a discussion": Assessments as useful

Although many participants criticized the assessment process and its associated barriers, their experiences during their assessment appointments varied significantly. Some participants had negative experiences during their assessment appointments, but many others reported positive interactions with assessors. Difficulty of access did not necessarily translate into a negative experience during the appointment itself.

Assessments as effective and clarifying

In some cases, participants perceived assessors’ questions as useful, especially when they focused on the risks, benefits, and expectations associated with major surgery. Nelson explained:

It was good because, like, I’m aware that it’s a significant surgery, and that it’s going to—that I will require someone to help me when I first have it. But it was great to have someone who really could lay it out and say, ‘this is what happens and here’s what you need to have in place. And do you have that in place?

Participants with positive experiences like Nelson’s often described their assessment(s) as more of a discussion than an interrogation. This was often related to their assessor(s)’ communication style(s). “It wasn’t a grilling,” Charlene described. “They didn’t have a 200-watt light in my face or anything like that.” Describing his assessment as “a very pleasant conversation,” Nelson recalled how having a “supportive,” “helpful,” “positive,” and “encouraging” assessor “made it clear” that he didn’t have to prove anything:

It wasn’t about convincing [them] that I’m ready. It’s just—[they] just—this is the step that we need you to take and—to make sure that indeed this was going to be the right step for me. So I have been pleased with the timing and the way it’s been handled.

Participants reporting positive experiences often left their appointments feeling better prepared for surgery and having a clear sense of the next steps. “Yeah, I had the roadmap there,” Charlene recalled. “I had a very clear idea of what I had to do next.” Particularly important for surgery preparedness, some participants appreciated candid discussions with their assessors about recovery plans, support networks, and realistic expectations about surgery and its results. Devon, for example, shared how his assessor spoke honestly with him about the aftermath of a hysterectomy and reported feeling comfortable enough to ask his assessor any question he wanted without worrying about the assessor responding in an awkward manner. Another participant, Cass, reported that her assessor worked to “make sure that I knew that it wasn’t going to cure everything. That it’s not this magic bullet to all the problems.” These narratives suggest that when participants view assessors’ questions as relevant and experience the clinical encounter as an honest discussion rather than an interrogation, they can view assessment appointments as useful, clarifying, and positive.

Assessments as affirming

Among participants reporting positive assessment experiences, some also described them as affirming. Chris shared:

The first time, honestly, I left, I felt so good. All I remember is feeling like almost euphoric. Like, this huge weight had been lifted off of me…Actually I don’t know if I’ve ever felt that elated ever since or before…I did not have to prove anything. Like, I was worried that I was going to have to fight for something or prove. It was very easy. Again, very affirming.

Like Chris and his concern that he was going to “have to fight for something,” a number of participants approached their assessment appointments with anticipatory anxiety. We attribute these shared negative preconceptions to the ongoing history of medical transphobia as well as the circulation of people’s negative experiences within trans communities. In some cases, participants’ preconceptions were accurate. But in others, participants were relieved when their assessor(s) were respectful and “really friendly and decent” (Blake). Egbertyne, for example, said that the appointment was “less stressful than [she’d] anticipated.” Positive encounters were not always frictionless, but gave participants the opportunity to verbalize and affirm their readiness for surgery. As NJ explained:

The assessment process was a little stressful, but it was worth the wait…putting it into words in that kind of a setting with my assessor actually made me realize how ready I was for the surgery. I mean, the assessment is a little bit of a tricky process. It’s sometimes like a stress interview. And other times not so much. But I felt great. I mean, I felt sure that this is what I really wanted.

These stories suggest that surgical assessments have the potential to go beyond their fraught history. In some cases, assessments can affirm the trans identities of patients while helping them feel prepared for surgery.

Discussion

No matter how their actual assessment turned out, the majority of participants approached their appointments with a great deal of anxiety and trepidation. We understand this as an expression of minority stress (Meyer, 2003), where marginalized groups’ past experiences of prejudice and discrimination can lead them to expect mistreatment from others. This feeling can heighten when the patient does not know their assessor, making it challenging to build trust. Many participants who either had a prior relationship or were able to develop rapport with their assessor(s) reported being able to express their stories, concerns, and criticisms without the level of self-censorship reported by those who felt either too intimidated, frustrated, or distrustful to fully participate.

The intense level of emotional investment in the process can also explain participants’ anxiety and trepidation. Lengthy wait times and participants’ sense that their identities and experiences were on trial caused many to view their assessments as a one-time opportunity. Consistent with the literature, some participants admitted to self-censorship during assessments (Lev, 2009; Speer & Parsons, 2006; Stone, 1991). Again, we connected this to nature of the patient-assessor relationship and the patient’s perception of the assessment appointment. When people were less afraid of being denied access to gender-affirming surgery, they were more likely to openly discuss their concerns and history. Participants who trusted their assessors and felt that they had little to prove had less difficulty being honest (see also Barker & Wylie, 2008; Budge, 2015). Our research suggests that assessors can create a stronger patient-provider relationship by acknowledging past and ongoing transphobia within health care systems and addressing the fears patients may encounter regarding their assessment appointments. Frustrations with the current assessment system featured consistently in participants’ stories. The realities of publicly-funded systems can lead to extensive wait times and complex bureaucratic demands. In the case of gender-affirming surgery, a lack of access to knowledgeable and supportive providers, unclear or changing administrative processes, and insufficient communication made the experience unnecessarily burdensome. Without receiving clear information from providers, many participants had little choice but to rely on patchwork or outdated information while encountering numerous delays throughout the process. Without clear information or a timeline for assessment or surgery, a number of participants also reported feeling unable to adequately plan budgets, schedules, or transportation. This amplified participants’ stress and anxiety levels, which potentially intensified dysphoric feelings and other mental health issues. This study suggests that the assessment process needs to consider how the medical system’s complexities may add undue pressure to an already challenging moment in a patient’s life. When patients find themselves caught in a tangle of incorrect and/or outdated information from medical, digital, and peer sources, they often end up feeling demoralized or give up prematurely. As demonstrated by some participants, this can negatively impact mental health and transition journeys. To address these challenges, this study suggests that people trying to access assessments need clearer pathways with centralized, up-to-date information (including about surgeries themselves). Such information should be available in multiple languages to consider local linguistic communities. It should address any issues related to physical limitations (i.e., BMI limits, and preexisting conditions that can make surgery outside of a hospital setting challenging), and communicate how people can access assessors without a referral from a primary care provider. Information about telehealth options for people living significant distances from qualified assessors and trans specialists should also be available. For those who have already booked assessment appointments, a centralized website could also act as a patient portal providing them a sense of their place on a waitlist. Many participants described their experience with the assessment process as frustrating. Participants with negative assessment experiences often reported that their assessors’ knowledge was outdated, which undermined the assessment’s potential benefits. Echoing the literature, some participants critical of assessments also pointed out that the bar is set much higher for trans patients (see Bockting et al., 2006; Budge & dickey, 2017), and resented the implication that they could not evaluate the risks and benefits of surgery for themselves (see Bouman et al., 2014; Hale, 2007; Toivonen & Dobson, 2017). They also argued that discussions of regret and certain questions about their gender history can reveal transphobic assumptions and undermined their agency to choose what is right for them (see also Worth, 2018) . Even those less critical of the process reported encounters with health care providers who mistreated them or made harmful assumptions about them and their healthcare needs. One way to mitigate these issues is to train assessors and other providers to pay attention to the framing of their questions to ensure that they 1) do not reinforce assumptions about what bodies, identities or life trajectories are more valuable; and 2) focus on helping patients prepare for surgery and its varied outcomes. For example, rather than focusing on the notion of regret, it may be more helpful to frame the conversation about the possibility of being disappointed about outcomes (see Fenway Health’s “Guide for Client Evaluation and Interview” (Eley, 2018)). One way to address these concerns is for health authorities to create more frequent and consistent opportunities for professional, peer-led education on trans-competent care among health care providers, particularly among qualified assessors and primary care providers (Clark, Veale, Townsend et al., 2018). Participants reporting positive experiences with assessors—including participants who were critical of the process itself—often described them as knowledgeable. Increasing the number of qualified assessors can enhance accessibility and reduce delays; however, it is equally important to ensure that assessors receive proper training and ongoing education. Health authorities should also consider creating mechanisms by which patients can direct complaints and/or appeals, and investing in infrastructure to reduce wait times and enhance communication channels between patients, assessors, and surgeons. Given the experiences of participants in this study, we are glad that the WPATH will integrate community feedback in all chapters of the next version of the SoC (SoC8). Although some participants agreed that the provision of mental health services can be an important part of the process, many of them strongly objected to the idea that assessments should be mandatory. Instead, they expressed a strong preference for an informed consent model where patients decide on the kind of care they will receive (which can include mental healthcare). Patients are best served by multi-disciplinary teams that provide individualized care. Many trans people seeking gender-affirming surgery are already connected to a primary care or mental health service provider that could act as a liaison between the patient and other health care providers. Discussing the risks, benefits and implications of surgery is more likely to be a useful conversation with a provider who has an established relationship with their patient. Informed consent also acknowledges that a decision about major surgery should draw on the lived experience of the patient and the expertise of their health care providers to ensure patients have all the information they need to make an informed decision. This includes giving the patient sufficient time to process the information and ask follow-up questions before their surgical consultation. This study does have limitations, which include its timeframe. We interviewed people about a period (2011-2016) where many changes were being made to the system of gender-affirming care in BC (e.g., increase in the number of assessors, removal of the requirement for a sign-off from a single chief assessor) and some people discussed assessments that occurred before 2011. As a result, some people’s experiences may be a reflection of a system that predates the implementation of recent changes that have likely improved access and reduced delays in B.C.

Conclusion

This qualitative study is the first to report on people’s experiences accessing surgical readiness assessments for gender-affirming surgery in Canada. Although assessments are supposed to ensure patients are both psychologically and practically prepared for surgery, participants’ experiences raise significant questions about how they have operated. At the same time, their experiences also point to some promising practices. We hope that participants’ stories can contribute to debates about surgery readiness assessments while helping identify supportive practices that can guide change—possibly toward a more gender-affirming model of assessment. Many of this study’s findings have already been implemented in British Columbia. Trans Care BC has been working to clarify administrative processes, train publicly-funded physicians and Nurse Practitioners with long-standing relationships with clients and trans communities, improve online information regarding surgery, improve communication with providers and patients, educate more health care professionals, and provide individualized support in order to improve access to gender-affirming care—including surgery. If the healthcare system adequately implements and funds these changes, they are likely to address many of the challenges and frustrations expressed by participants in this study. What happens in British Columbia could serve as one of the models for improving trans healthcare across North America and beyond.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Funding Statement

This research was funded by TransCare BC.

Acknowledgements

We would like to acknowledge Dr. Jennifer Wolowic, Nathan Strayed and Lyra McKee for their contributions to the research, as well as Dr. Beth Clark, Lorraine Grieves, Dr. Marria Townsend and Dr. Elizabeth Saewyc for their feedback on earlier versions of this manuscript.

Disclosure statement

The authors declare that they have no conflict of interest.