Uncertain Expertise and the Limitations of Clinical Guidelines in Transgender Healthcare

Abstract

To alleviate uncertainty in the specialized field of transgender medicine, mental and physical healthcare providers have introduced the rhetoric of evidence-based medicine (EBM) in clinical guidelines to help inform medical decision making. However there are no diagnostic tests to assess the effectiveness of transgender medical interventions and no scientific evidence to support the guidelines. Using in-depth interviews with a purposive sample of 23 healthcare providers, I found that providers invoked two strategies for negotiating the guidelines. Some used the rhetoric of EBM and closely followed clinical guidelines to contain uncertainty. Others flexibly interpreted the guidelines to embrace uncertainty. These findings raise questions about the effectiveness of EBM and guidelines in medical decision making. While trans medicine involves an identity and not a biomedical illness, providers use the same strategies to respond to uncertainty as they may in other medical arenas.

Keeping out and getting in: reframing emergency department gatekeeping as structural competence

“…Medical gatekeeping entails control over access to healthcare resources or information. Although gatekeeping may occur at various points of health service delivery, including information flow among clinical staff (Riley and Manias , Street ), reluctance or refusal to order certain screening tests or treatments (Faulkner 2002, Shuster , Tritter et al . ), and pharmacists’ ethical decision‐making (Chiarello ), most sociological studies have focused on practices that facilitate or constrain patients’ entry to care.…”

(Re) Making gender in the clinical context: a look at how ideologies shape the medical construction of gender dysphoria in Portugal

“…This statement is in accord with Davy's (2015) research on the politics of diagnosing trans people, where it was found that the diagnostic framework in the DSM-5 draws upon a binary conception of gender and judges trans people according to their wish to align their genitals with their gender identity through gender-confirming surgery. The view that trans people are interpreted against this backdrop as having a similar trans experience outlined by Shuster (2016) is made apparent in the above statement. What also became evident in the comments of a few practitioners is that there is insufficient updated scientific information available on trans identities and embodiments who do not fit in the authentic trans ideal and that this has a considerable impact on their practice with people who do not position themselves within the gender binary.…”

“…This practitioner, like others who follow a social model, adopts a position which understands gender identity as fluid and therefore allows room for the diagnostic attribution of GD to people who do not correspond to the authentic trans identity (McQueen 2016). Without biomarkers or scientific tests to prove the diagnosis of GD (Shuster 2016), making decisions on the diagnostic attribution based on the identification of the authentic trans identity (McQueen 2016) is problematic as it relies on the assumption of the existence of a real man and woman (Hird 2002) and, therefore, constrains the validation of other forms of identity, apart from the normative gender binary, by practitioners. What this also means is that without the diagnosis of GD some trans people might not access gender-confirming medical procedures; even when trans people do not intend to do genital surgery, they might wish to undergo other gender-confirming medical procedures such as breast surgery or hormone therapy.…”

“…GD is a prime example of how the attribution of a disorder for which there are no confirmatory biomarkers or scientific tests can be particularly challenging for medicine (Shuster 2016) and might not always work in the best interests of trans people (Davis et al 2016) as they might feel pressured to fit into a clinical category (Turowetz and Maynard 2016). Without biological evidence to support decisions on GD, and as the diagnostic attribution is based upon the "distress that may accompany the incongruence between one's experienced or expressed gender and one's assigned gender" (APA 2013, p. 451), practitioners tend to deal with the uncertainty that characterizes the diagnosis of GD by employing gatekeeping practices that are understood by them as a tool to prevent regret regarding permanent bodily interventions such as genital surgery and infertility due to hormone therapy (Shuster 2016). Thus, there is a danger that practitioners base their decisions on the attribution of GD on their own assumptions regarding the nature of gender (Whitehead et al 2012) which might not allow room for the gender self-definition of trans people (Linander et al 2017b).…”

Expanding Transgender Studies in Sociology

“…To this end, each of the articles in this special issue builds upon recent insights from emerging transgender studies in sociology. Recent sociological studies, for example, consistently demonstrate that transgender people face significant inequalities in familial (Meadow ; Pfeffer ; Travers ) ; religious (Moon, Tobin, and Sumerau ; Sumerau, Mathers, and Cragun ; Sumerau, Mathers, and Lampe ); occupational (Connell ; Schilt ; Yavorsky ); medical (Johnson ; Lampe, Carter, and Sumerau ; Shuster ); and public (Abelson ; Mathers ; Rogers ) contexts. They also demonstrate difficulties and resistance transgender people experience when seeking to negotiate and present non‐cisgender identities in public and private interactions (Darwin ; Garrison ; Shuster ).…”