"Doing bad," "doing better"... and letting clinicians off the hook

Just a quick public-service announcement: you’re going to have to forgive all the quotation marks (mostly the authors’) and explanatory brackets (mine).

Annelou De Vries and her colleagues have a new article in the journal of BMC Medical Ethics that expresses their concern that the focus on “‘effective’” and “‘positive’” outcomes for adolescents undergoing gender-affirming medical treatments reflects “underlying value judgments [that define] what constitutes desirable outcomes”—such as the apparently problematic expectation that patients’ mental health really ought to improve as a result of treatment.

The authors “aim to open up the conversation on what constitutes ‘effective’ GAMT [gender-affirming medical treatment] outcomes, particularly in relation to the diverse and often complex [read: negative] transition experiences” of their adolescent patients.

De Vries and her colleagues propose examining gender-affirming medical treatments through the lens of “trans studies,” as opposed to more “normative biomedical framing”:

Central to trans studies are critiques of the normative biomedical framing of gender transition challenging restrictive binary narratives that depict gender transition as a linear journey from man to woman or vice versa.

An important aspect of this critique, informed by feminist and queer affect theory, is the role of negative affect – or feeling bad – in the context of GAMT. Feminist and queer affect theory offers tools to explore how affective experiences are shaped by cultural, social, and political forces. This framework provides a useful lens for understanding the persistence of negative feelings throughout and beyond gender transition, challenging the dominant view of GAMT as a linear, teleological process aimed at achieving alignment between one’s gender identity and body, ultimately leading to a coherent sense of self. This prevailing narrative is shaped by the expectation that transition should lead to improvement, implying that each step in the transition process mitigates negative feelings, ultimately “curing” gender dysphoria and improving the well-being of the TGD individual. Importantly, this perspective extends beyond the medical community; it is also prominent among TGD activists and advocates for transgender healthcare who emphasize the life-saving potential of gender-affirming interventions, particularly in preventing suicide and improving life satisfaction.

While theorizations on the persistence of negative affect throughout and beyond GAMT encourage critical reflection on the premise of GAMT as leading to physical alignment as well as psychological and psychosocial improvement, these insights have primarily remained within the realm of trans cultural theory, with limited integration into biomedical research or transgender healthcare [1,2,3]. As authors, we see value in bridging these disciplines to foster more nuanced and interdisciplinary conversations within transgender healthcare.

De Vries and her co-authors want to “challeng[e] restrictive binary narratives” like doctors treated a medical condition and the patient got better.

Medical providers and patients alike are under the mistaken and problematic impression that “transition should lead to improvement.” In reality, researchers and clinicians are seeing “the persistence of negative affect throughout and beyond GAMT”: that is, patients continuing to struggle or even doing worse during and after transition. Rather than explore why patients continue to struggle, De Vries and her co-authors argue we need simply to adopt more “nuanced and interdisciplinary” perspective on what might otherwise be uncharitably characterized as negative outcomes of medical interventions.

The article centers on a review of the existing research on outcomes of adolescent gender medicine. Sadly, we are not currently measuring the right outcomes because we keep finding the wrong answers (e.g., patients not doing well):

We present the themes in this particular order to emphasize the teleological narrative commonly portrayed in medical literature, which we aim to challenge: a progression from “doing bad” to “doing better,” ultimately leading to an overall improvement in the individual’s functioning and well-being. This narrative also suggests that gender identity is potentially malleable during adolescence but tends toward a stable endpoint, solidifying into a static identity in young adulthood. Furthermore, it suggests movement within a binary understanding of gender, portraying gender transition as a chronological process with a clear beginning and endpoint. Such a framing of gender transition upholds the dominant understanding of GAMT as a linear process with a stable, teleological outcome. Central to these themes is a pervasive “logic of improvement,” implying that GAMT is “curative,” supposedly guiding TGD individuals from “doing bad” to “doing better” in a linear, teleological manner. In the subsequent sections, we will discuss how each theme reveals the underlying expectations that define the perception of GAMT as “effective,” reflecting broader discourses on the objectives and outcomes of GAMT for adolescents.

By the way, focusing on instances of regret and “detransition” are examples of “binary” and “linear” (a.k.a., not “nuanced” and “diverse”) thinking.

When evaluating regret as an outcome of GAMT, five studies highlight that participants reported minimal or no feelings of regret regarding GAMT. This lack of regret is generally portrayed as a positive and important result, reinforcing the idea that feelings of regret are an “unfavorable result” and “a matter of serious concern” (31 p472). S

When lack of regret is reported as a positive outcome, that reinforces the troubling idea that the presence of regret might a bad thing. This “pervasive ‘logic of improvement’” risks denying adolescents access to interventions they may later regret.

The sentiment that GAMT can lead to a wide variety of improvements, i.e. “doing better” in various domains is a key argument in this literature as to how GAMT can be “effective” or beneficial for TGD youth: “a treatment protocol including puberty suppression leads to improved psychological functioning of transgender adolescents. While enabling them to make important age-appropriate developmental transitions, it contributes to a satisfactory objective and subjective well-being in young adulthood” (8 p703). Furthermore, Cohen-Kettenis and Van Goozen (77 p270) note that, provided they manage GAMT without problems, TGD adolescents have a lot to gain throughout their life course after treatment: “they can catch up with their peers and devote their attention to friendships, partnerships, and career.” Allen et al. (69 p308) echo these broad improvements in well-being: “transgender people tend to have more positive life experiences when they receive gender-affirming care.”

Although many authors highlight the various improvements in TGD adolescents’ lives following GAMT, providing evidence that they are “doing better,” various studies also report minimal or no improvements after GAMT. This highlights a tension in the narrative that GAMT inevitably leads to more positive life experiences and general improvements. For instance, while psychosocial health outcomes of TGD individuals were generally closer to the population norm following GAMT, Becker-Hebly et al. (21 p1763) note that “not all psychosocial health problems seemed to be resolved;” baseline difficulties persisted throughout the follow-up period for TGD adolescents receiving puberty suppression.

Similarly, Carmichael et al. [20] observe that GnRHa treatment did not bring either measurable benefits or harm to psychological function in TGD adolescents, concluding a lack of significant changes in psychological function, quality of life, or the degree of gender dysphoria. Additionally, Kuper et al. [67] acknowledge that environmental stresses may not improve after GAMT, and could potentially worsen, especially if they increase the youth’s visibility as a TGD individual. As Smith et al. (78 p97) assert, “alleviation of the gender problem is not equivalent with an easy life.” Indeed, as Turban et al. (72 p11) emphasize, TGD individuals continue to “face a range of other psychosocial stressors that contribute to chronic minority stress, including but not limited to employment discrimination, lack of safe access to public facilities, and physical violence.” These systemic, socio-political factors can greatly impact TGD individuals’ quality of life, well-being, and in turn, the persistence of negative affect [75]. The idea that GAMT cannot remedy all psychosocial stressors is echoed by Tordoff et al. (74 p2): “initiation of GAHs may present new stressors that may be associated with exacerbation of mental health symptoms early in care, such as experiences of discrimination associated with more frequent points of engagement in a largely cisnormative healthcare system.”

These examples point to the idea that GAMT might not always result in “doing better.” To us, this raises the question of whether GAMT can be considered an “effective” treatment even if it does not consistently lead to improvement.

Since we intend to keep transitioning teenagers, how can we measure the outcomes in ways that will make these interventions appear “effective” and “successful,” even if patients don’t improve or do worse according to standard biomedical “normative” and therefore problematic outcome measures?

The flip side of the above is that improvement has become a norm that GAMT is required to meet in order to be justified, often operationalized by measurable, beneficial effects on the overall well-being of TGD adolescents. However, our findings indicate ambiguity regarding the objectives of GAMT for adolescents. Should its primary aim be to alleviate gender-related distress, or the improvement of general well-being and functioning in order for it to be justified?

The authors note that “‘improvement’ seems one of the only ways to justify this care practice for TGD adolescents, but comes at the cost of obscuring and rendering invisible more diverse and nuanced [read: negative] experiences of GAMT and risks discrediting this care practice.”

The latter has serious ethical implications for clinical practice and (shared) decision-making: the logic of improvement risks reproducing (largely implicit) normative images of “straightforward” presentations of gender dysphoria and “good functioning” clients as opposed to “complex” clients with co-occurring mental health problems whose experiences of gender dysphoria are perceived by care healthcare providers as unstable or less credible.

Not only does this logic limit space for more diverse and nuanced [negative] experiences, it can also put a strain on the therapeutic relationship between healthcare providers and TGD youth themselves [26, 86,87,88]. For example, there is a prevalent fear among TGD individuals who want to access GAMT that not showing enough distress will impact their eligibility for care [26, 87, 88]. This places further tension on the provider-client relationship; TGD individuals may see their healthcare providers as gatekeepers, hindering honest communication due to a fear that it may jeopardize their care [25, 86]. This medical model can function to push healthcare providers into the role of gatekeepers, who are then expected to navigate the inherent uncertainty involved in this care and prevent any risk of regret [25].

Furthermore, challenging the logic of improvement has significant clinical implications. For example, it becomes imperative for healthcare providers to engage in open conversations with TGD individuals and their families or caregivers about the possibility that GAMT may not lead to the expected or desired outcomes. As discussed earlier, this narrative of transition as “curative” is not limited to medical settings; it is also prevalent within TGD communities. However, framing GAMT as entirely curative may impose unrealistic expectations on both the treatment itself as well as healthcare providers to deliver exclusively “positive” outcomes [30, 80]. Openly addressing and accepting the wide range of potential developments and treatment outcomes – including changes in the individual’s gender identity, treatment preferences, regret, and the possibility of retransition or detransition – will foster a more nuanced and diverse understanding of GAMT, helping TGD youth, their parents or caregivers, and healthcare providers to make well-informed decisions. Taking this approach to GAMT not only relieves the pressure on this form of care to “fix” several aspects of a person’s life but also allows for a more nuanced and realistic understanding of the “effectiveness” of GAMT.

Unfortunately, patients, too, often expect broader improvements in mental health and wellbeing through transition, which is unfair to clinicians, who are now expected to deliver [:(((], and researchers, who are expected to find evidence of improvement.

[Something tells me we wouldn’t be embarking on these lengthy disquisitions about “nuance” if the researchers were finding evidence of improvement based on more traditional outcome measures, like the treatment working as intended.]

However, this teleological account of transition – resulting in alignment between one’s gender identity and body, alongside improved well-being – risks oversimplifying the often complex and ambivalent experiences of gender transition into a linear narrative of improvement; the expectation that this care could address all aspects of general functioning and well-being is unrealistic. Further, this expectation of gender transition as a step-by-step linear process can harm those undergoing treatment, creating external pressure to follow a specified trajectory [30, 80, 83]. While GAMT often aids in achieving gender congruence and overall improvement, benefiting the lives of young TGD individuals, the justification of this care practice should not be conditional on this logic of improvement. Trans negativity [1,2,3, 89] challenges the dominant discourse that GAMT must necessarily alleviate distress and lead to improvement in overall well-being and functioning in order to be justified, instead acknowledging that negative feelings often persist after, or even because of, GAMT. As Malatino (4 p26) states, trans negativity challenges the dominant framing of GAMT characterized by a period of distress, followed by an “experience of harmony, good feeling, corporeal comfort, and ease when navigating everyday social interactions.”

We keep seeing our patients getting worse after and even because of our interventions. Thankfully, we are open-minded enough to appreciate “nuance” and “diversity,” therefore, we are not concerned when we see evidence that our patients are struggling. Unfortunately, our critics—and, increasingly, public-health authorities—think this is a problem, so we need to change the way what we do is evaluated so that we can’t be bullied into revisiting what we’re diagnosing and how we’re treating it.

Trans scholars argue that experiences of GAMT are often messier, more ambivalent, and temporally more complex than the binary of “doing bad before GAMT” and “doing better after GAMT” [90,91,92]. For example, Chu (2 np) notes, “I feel demonstrably worse since I started on hormones,” and mentions increased suicidal ideation after GAMT. Despite feeling worse during her transition, Chu (2 np) states, “transition doesn’t have to make me happy for me to want it [...] Desire and happiness are independent agents.” Consequently, Chu (2 np) argues that the only prerequisite for GAMT should be a demonstration of desire, asserting that “no amount of pain, anticipated or continuing, justifies its withholding” and that GAMT cannot be expected to “maximize good outcomes.” Chu’s perspective contributes an alternative for moving beyond the logic of improvement narrative, and therefore beyond diagnostic prerequisites and “effective” treatment outcomes.

[…] Others have proposed alternative ethical frameworks for justifying the provision of GAMT for adolescents; for example, by drawing an analogy to interventions like abortion and birth control [9]. Similar to GAMT, these interventions alter healthy physiological states based on an individual’s fundamental self-conception and desired life path, with their effectiveness measured by how well they help individuals achieve their embodiment goals [9]. In this view, healthcare is provided and justified on the basis of personal desire and autonomy.

We fulfilled adolescents’ potentially temporary and foreseeably regrettable embodiment goals (and called it healthcare!). Therefore, the treatment was, by definition of its provision, a success!

Patient hated her breasts and wanted her breasts removed.

We removed patient’s breasts.

Success!

Patient later experiences regrets and wants her breasts back.

We refer patient to a cosmetic surgeon for implants.

Success!

Nothing to see here!

As long as we discard our “binary” ways of thinking and our “logics of improvement” and our attachment to “good” “normative” outcomes and pound “nuance” like cheap beer, we must agree that no one is better placed to offer young people gender-affirming medical treatment than experts like De Vries, who can flexibly and nonjudgmentally meet one embodiment goal after another.

After all, there is no medical outcome either good or bad, but thinking makes it so.