The Evidence Supports Informed Consent

 

Two models of gender-affirming care provision are currently in conflict. What does the research say?

 
 

by Veronica Esposito

I remember very well the morning that I met with a gender therapist to discuss starting my medical transition. I sat in an empty, sterile-feeling HMO waiting room  fending off a panic attack because I didn’t know what awaited me in my therapist’s office. I’d heard stories of invasive questions designed to weed out those who weren’t really trans, and the “real life experience” test (where trans people were forced to live as their desired gender for a year before receiving any medical care). Hoping to bolster my case, I’d put on a lovely black dress and done a full face of makeup, but it wasn’t making me feel much more confident.

I needn’t have worried. When I spoke with my gender therapist that morning, she was an incredibly empathic person, at pains to help me feel safe and welcomed. After a few low-key questions to establish that I had felt gender dysphoric for most of my life, she started explaining to me about what my HMO could offer in terms of hormone replacement therapy (HRT). A few weeks later I met with an endocrinologist, who went through all of the risks and benefits of hormone treatment. Then I had my prescription. After all of the horror stories, I honestly could not believe it had been so easy.

The intensive grilling and tests of transness that I feared constitute much of what’s called the gatekeeping model of transition treatment. The autonomy and relative ease I actually experienced is what’s known as the informed consent model.

Informed consent means that a trans person could access gender-affirming care without any need for mental health  treatment or a lengthy assessment process. This model is routine in the vast majority of all non-transgender medical care. Cisgender people routinely access similar hormonal medications as trans people without a mental health diagnosis for conditions like polycystic ovarian syndrome, precocious puberty, menopause, loss of virility with age, and birth control.

Many doctors worldwide use a gatekeeping approach to gender-affirming care, but the informed consent model for transgender hormone replacement therapy is also widespread in the United States—a map of IC providers created by activist and journalist Erin Reed lists nearly 1,000 such providers in this country. This has been the result of decades of advocacy by the trans community to have our healthcare approached similarly to other comparable treatments. 

Currently in the U.S., hormone replacement therapy is widely available in an informed consent framework, while most surgeries still have a gatekeeping component, which usually requires that patients undergo a period of receiving HRT and receive letters in support of their surgeries from licensed therapists.

How do we know that informed consent works better? Well, to start, granting trans people significant levels of autonomy over their medical care is in line with the ethics of the medical profession, which directs doctors to engage in shared decision-making and uphold client autonomy whenever possible. As Bryan Murray puts it in a piece for the American Medical Association Journal of Ethics,  “Informed consent is at the heart of shared decision making—a recommended approach to medical treatment decision in which patients actively participate with their doctors.” Scholar Madeleine Lipshie-Williams points out that the gatekeeping mode for gender-affirming care is at odds with how the majority of medicine is practiced in the U.S.: “[the gatekeeping model], which requires medical professionals to provide official opinions on a trangender patient’s readiness to accept and undergo care, stands in contrast to the majority model of medical consent in the US.” Lipshie-Williams also argues that the informed consent framework is preferable because it is necessary for the normalization of trans identities: “there cannot be a depathologizing of transgender identity as long as transgender individuals are required to be seen by mental health specialists to confirm both the validity of their own self-proclaimed identity, as well as their mental fitness to consent to medical interventions that have been broadly accepted as necessary. There is an inherent contradiction in declaring medical care necessary whilst simultaneously maintaining that those for whom it is necessary continue to lack the capacity to consent to this care without assistance.”

Beyond these arguments in favor of IC care for trans medicine, it turns out that this question has been the subject of empirical studies. During my time in grad school getting my Master’s Degree in Counseling, I wrote my Master’s project on the informed consent framework in gender-affirming care, reading many research papers on the subject. Also, as a therapist specializing in trans clients, I have kept up-to-date with the research and have consulted with many other such therapists on best practices for our clients. Here is some of what I’ve learned.

First of all, there’s no evidence that gatekeeping leads to better outcomes. In a 2016 paper reviewing the state of informed consent in trans medicine, Cavanaugh et al. stated of the gatekeeping model that “There is no scientific evidence of the benefit of these requirements.” That is, there is no scientific evidence in favor of better outcomes with the gatekeeping model. It has just been assumed to be better by the mostly white, male cis-het “experts” who formulated the rules of gender-affirming medicine.

In the 2021 paper “The Informed Consent Model of Care for Accessing Gender-Affirming Hormone Therapy Is Associated With High Patient Satisfaction,” Spanos et al. found that there was higher satisfaction among trans patients who received HRT directly via their primary care general practitioner (GP), instead of being forced to first get a mental health evaluation. Notably, 80% of those in the GP group still chose to pursue work with a therapist, which rebuts a claim by those in favor of the gatekeeping model that trans patients won’t get the mental health support they need if they are just allowed to have hormones without a therapeutic evaluation.

A 2011 study by Madeline B. Deutsch of 1,944 trans patients given HRT via informed consent for an average of just over 3 years found just 17 cases of regret—less than a 1% regret rate. Even though trans people were allowed to get HRT just by asking for it, almost none of them came to regret the choice. Duetsch also found “no related legal actions” lodges against the IC clinics, debunking another argument advanced by gatekeeping proponents that heavy gatekeeping requirements reduce legal liability.

In the 2019 paper “Health Needs of Trans and Gender Diverse Adults in Australia,” Zwickl et al. found a clear preference among trans patients for the elimination of gatekeeping when accessing medical care. One trans person surveyed stated, “I’ve only ever been hurt by these gatekeepers. They have never saved me from a mistake, they have only gotten in my way, delayed access to important interventions, and sometimes abusing their total monopoly over my access to health care.” In its recommendations for improvement, the paper clearly stated, “Financial and geographical accessibility, as well as ‘gatekeeping’, need to be addressed and whilst mental health support is very much desired, the cost and time required to undertake assessments and approvals for interventions were barriers.”

Why did the gatekeeping model fall out of favor? As documented by trans scholar stef shuster in their book Transgender Medicine, historian Susan Stryker in Trangender History, the 2022 documentary Framing Agnes, and many other sources, when gender-affirming care first became available in the U.S. in the 1950s and ‘60s, it was extremely heavily gatekept. Transition was only granted to a handful of those deemed (by white, male cis-het doctors) most strongly to strongly in conformity with prevailing gender norms, be most likely to pass for cisgender, and most willing to cut ties entirely with their past and begin a whole new life, keeping their trans history a secret.

This was a disaster for trans people. Not only did this cut off so many in the community from essential medical services, it also caused significant trauma among the few who did manage to transition. As trans identities grew less stigmatized, and as more and more empirical evidence mounted against gatekeeping trans medicine, the gatekeeping model slowly gave way to the informed consent model.

These are just a few of the papers indicating that IC care is good for trans people and aligned with best practices in medicine. For myself, I feel fortunate that I did not encounter significant barriers to getting HRT and beginning my gender transition. Years later, I now tell people how lucky I was to be able to get what I needed so easily—if I had been heavily gatekept, I might have given up in my efforts to transition, or at least have been delayed for a period of months or years. Looking back, that would have been a catastrophic loss for me.


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.

 
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