Journal Club: Informed Consent in Trans Healthcare
A 2019 paper by stef shuster found providers often substituted gatekeeping for informed consent in the practice of transgender healthcare.
by Veronica Esposito
Journal Club is a monthly feature at Assigned Media where we break down a research paper that is of particular value to the trans community. From cutting-edge research to older papers whose importance resonates throughout the field, journalist Veronica Esposito helps you understand how scientists are investigating trans life.
Informed consent is a bedrock of medical practice in the United States—doctors are ethically mandated to share the risks and benefits of a medical treatment with their patients, empowering them to make decisions that are in their own best interests. This practice is of particular importance for transgender individuals, who historically have had their medical autonomy undermined by a paternalistic model of medical care.
Trans researcher stef shuster chose to examine just what “informed consent” really means when it comes to gender-affirming medical care in a paper for the journal Social Science & Medicine in 2019. They wanted to know if providers of trans medical care really followed informed consent, or if they just said they did.
As shuster points out in their paper “Performing informed consent in transgender medicine,” it’s not uncommon for medical providers to deviate from the informed consent framework for a variety of reasons. They often do so in areas of medicine that are considered newer—areas where there is a lack of empirical data or standard practices—substituting medical gatekeeping for informed patient choice. “In medical arenas lacking routinization and consensus in best practices,” shuster writes, “medical providers have been found to double down on asserting medical authority to bolster their claims to expertise, even when such claims are tenuous.” These assertions of authority are typically referred to as “gatekeeping,” which occurs when providers add extra steps or requirements into the process of receiving medical care, often paternalistically being done for the “patient’s own good.”.
This is precisely why shuster chose to conduct a qualitative study of 23 providers of gender-affirming medical care to see just how they use informed consent in their practice. The results of their research are quite clear. There is often a difference between what these providers claim to do and what actually happens. “Medical providers say they follow the tenets of informed consent,” they write, “[but] my analysis shows how their practices more closely resemble a paternalistic model of medicine where ‘doctor knows best.’ In spite of the potential for informed consent to level power differences in clinical encounters, providers’ medical authority remains intact, as it becomes veiled by providers using the rhetoric of informed consent.”
Although 87% of the providers shuster surveyed believed themselves to be practicing informed consent, shuster found wide inconsistencies in just how these providers defined informed consent and how they actually practiced it with adult trans patients. (Since informed consent with minors functions very differently than with adults, shushter was only look at adult patients.) Less then 10% of shuster’s respondents followed the literal definition of informed consent, diverging from this principle in various ways. Providers typically found ways to insert their authority into the informed consent process, often inserting requirements such as letters or mental health checks, and providers often asserted their judgment in places where there was ambiguity.
The other 90%, shuster argues, found ways to fold in gatekeeping practices to what they considered to be an informed consent framework. Providers would often simply deny informed consent when “they believe[d] their patients are lying to them or are not quite ready to begin medical interventions.” One of the doctors shuster interviewed denied a testosterone refill to a trans man who had been on the hormone for 10 years because she did not believe he was paying sufficient attention to her during their consultation. According to Ann, the patient was “nodding along” as she described the risks and benefits of the hormone treatment, “but I just wasn't sure he was really listening.” Off of that inference she denied him a refill prescription.
Such treatment of trans patients is important to note, as trans individuals report a disproportionate amount of adverse events while pursuing medical care. According to the National Center for Transgender Equality’s 2022 U.S. Trans Survey, 48% of those surveyed reported a negative medical experience in the past 12 months, including being refused services, being misgendered, or being spoken to with “harsh or abusive language.”
Another theme of shuster’s research is the unease providers feel about offering gender-affirming care, due to the lack of long-term information regarding hormonal treatments. In the face of such uncertainty—which is not limited to transgender medicine—one common tactic is to rely on standardized protocols, but as shuster points out,such protocols don’t currently exist for the practice of transgender medicine. Consequently, three-quarters of providers reported being fearful of eventual lawsuits, even though shuster found that none of the providers they interviewed had ever experienced any patient regretting their decision to begin treatment.
Providers find numerous ways to impose gatekeeping practices upon the informed consent framework. Virtually all providers shuster surveyed required a letter from a therapist attesting to a need for treatment before providing HRT. They also found that virtually all required yearly bloodwork for trans patients on HRT, in which various bodily indicators were checked to monitor a patient’s health; this is complicated by the fact that there are no baseline levels for trans people on estrogen or testosterone therapy, so those labs are subject to widely differing interpretation. According to shuster, some medical providers used that ambiguity as a space to impose their authority onto trans patients.
Shuster also found that providers would commonly gatekeep around so-called co-occurring conditions, which are mental or physical health issues that might be exacerbated by receiving gender-affirming care. They found that it was common practice to require a mental health evaluation before the initiation of hormone therapy. They also shared the example of a nurse who revoked the estrogen prescription of a 50-year-old trans woman with intact gonads on the basis of her mother having had a “cerebral vascular accident at 65.” The enforced cessation of estrogen therapy caused the patient to fall into depression, manifested in extreme behaviors such as picking. Even though the patient understood the potential risks of continuing estrogen therapy, the nurse felt justified in withdrawing her estrogen because he was “too concerned for her physical safety.”
The frequent use of gatekeeping with gender-affirming care contrasts greatly to the provision of contraception, which shuster noted also comes with similar risks as HRT. Unlike with transgender HRT, providers of contraception often “highlighted the positive effects of contraception while minimizing the likelihood of negative side effects,” while also framing contraception as a public good. Trans medicine, by contrast, is generally seen as having contested benefits to the patient and wider society.
Although they were in the minority, some of the providers that shuster spoke with went outside of the gatekeeping commonly practiced with trans clients in order to move closer to an informed consent framework. One therapist in particular began her appointment with trans clients by first signing a letter recommending hormone therapy telling the client that “there is nothing you can do that will result in you leaving this office without this letter.” The therapist saw this as a way of providing for a more safe and open conversation around the risks and benefits of hormone therapy, in line with the informed consent framework.
The research presented in “Performing informed consent in transgender medicine” gains extra salience in a climate in which gender-affirming care has become highly politicized. Heightened scrutiny has caused many medical providers to end services or enforce stricter limitations around their provision. For instance, recent years have seen the voluntary closing of gender clinics at University of Mississippi Medical Center and Dallas’s GENder Education and Care, Interdisciplinary Support, in spite of being legally able to operate in their jurisdictions. Terroristic threats against clinics that provide gender services, as well as a massive influx of trans patients to clinics due to flight from repressive states, have resulted in heightened tension at clinics, causing a chilling effect on providers.
Remedies for this lack of true informed consent include continued pursuit of long-term research as to the risks and benefits of HRT, improved education of medical providers regarding trans individuals, and the normalization of transgender identities. Unfortunately, until the medical profession becomes more comfortable with the practice of transgender medicine, such gatekeeping practices are likely to continue. Until then, the burden largely falls on individual trans patients to assert their rights in medical contexts. Organizations like the National Center for Transgender Equality offer information as to patients’ rights and ways to fight back in the face of medical providers who attempt to gatekeep treatment.
Veronica Esposito (she/her) is a writer and therapist based in the Bay Area. She writes regularly for The Guardian, Xtra Magazine, and KQED, the NPR member station for Northern California, on the arts, mental health, and LGBTQ+ issues.