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Fraught decision-making in transgender medicine

Published: 15 Dec 2021
Category: Unmet health needs & health inequalities

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This article is part of a series of blogs exploring how pharmacology can help address unmet health needs and health inequalities. Read our editorial to find out more. 

I am sitting in an audience with 500 medical providers waiting for a presentation to begin during an annual transgender healthcare conference. My seatmate leans over and says, “I’m so excited to be here. I have had more trans patients coming to my clinic and I feel completely lost!” I smile, nod my head, and assure her that many providers feel that way when first starting out in trans medicine. Meanwhile, the presenter begins, “For the next two hours we are going to go over the basics in trans medicine. You will learn to cultivate your Spidey sense and quickly identify those patients who might present problems later, and those we can reasonably expect to work with.”
 
I find myself wondering what developing a Spidey-sense means, why a provider needs it, and how it translates into medical decision-making. To explore these questions, I conducted three years of ethnographic field work that included interviewing physicians around the U.S. and observing health conferences. The research culminated in my book, Trans Medicine, which examines the social consequences of how providers of trans medicine make decisions when confronted with uncertainty. What I found is that many providers are doing the best they can. But there are missteps along the way as providers must develop new knowledge and tools without the typical protocols and scientific evidence they usually have in other areas of clinical practice.

Uncertainties in trans medicine

Social scientific research has demonstrated how providers are trained to deal with uncertainty. In trans medicine, some of the additional uncertainty experienced by providers stems from the fact that physicians are asked to work within someone’s gender identity and not a medical illness. To alleviate their uncertainty, some providers apply a medical framework to their work with trans patients. Subtly, this implies that patients are the problem to “fix” rather than understanding trans identities as natural variation - and medical interventions, such as hormone therapy, as helping to align one’s body and gender identity.

Another source of uncertainty that providers of trans medicine confront is that they often receive little to no specific training in working with trans patients or providing gender-affirming care. Responding to this lack of training, Cheryl, a director of a university hospital reflected, “It is a total ignorance of ‘what am I supposed to do?’ Providers in my hospital don't know how to do it. They are receptive, but we don’t have experience.” As she suggested, providers feel the strain of uncertainty because they do not feel equipped with adequate knowledge. This can create unease among providers who are trained with specialist knowledge and called upon by patients to be experts in the delivery of medicine.
 
Not all providers experience uncertainties about offering hormone therapy. Ellen, a physician, noted, “The hormones are the small part, like cookbook simple. Just follow the guidelines for administering hormones and proper dosage from trans associations.” Instead, she experienced uncertainty about, “how do I know when I should block someone’s access to care? What should I be looking for? What are the risks? Are they supported by evidence?” As she suggested, and other providers echoed, there many unknown factors in what indicators a provider should look for in proceeding with, or slowing down, gender-affirming care.

Gaps in scientific evidence

Despite the uncertainties that providers grapple with, clinical guidelines have been developed by professional associations to aid decision-making in the care of trans patients. Looking beneath the surface of these guidelines, the scientific evidence that supports them is murky. There are few studies on the long-term risks of gender-affirming interventions. Many studies rely on case reports or meta-analyses pooling data from studies with small sample sizes. While important to acknowledge that the evidence in trans medicine has been growing over the last decade, much of what exists does not conform to evidence-based standards.
 
Providers are extraordinarily worried about, “The paucity of evidence. We’re kind of doing this on the fly” as Peter, an endocrinologist, shared. Peter was not alone in his concerns. Alan, a physician, noted how the lack of evidence was, “The biggest challenge. The medical basis for hormone therapy is very limited. Compared to treating diabetes or other endocrine conditions, mostly it is expert opinion. There is no head-to-head trial comparison of oral estradiol to estrogen patches. There is no data about what happens in the ovaries of patients who are treated with testosterone.”
 
Because of limited evidence, some providers extrapolated the risks of hormones from data based on cisgender people to trans people. As Jennifer shared, “There may be a high risk of adverse outcomes. We know that trans men have elevated risks for uterine cancer. What we don’t know is if that is because of testosterone or delayed care. We know that trans women have risks for cardiovascular disease. But is it because of lifetime stress, or the estrogen itself, that poses risk?” As Jennifer described, in trans medicine there are unknown variables in the potential for heightened adverse health risks among trans people. But it is often left to individual providers to interpret risks and adjudicate the murky evidence.

Implications for trans medicine

In managing their uncertainty and trying to feel assured that their decisions are sound, Spidey-sense - or gut instinct - became a crutch that providers leaned on to help resolve formidable challenges in trans medicine. However, a lasting concern is that in using gut instinct, bias can seep into clinical decision-making. Moreover, within the context of vast uncertainty, providers may unintentionally perpetuate healthcare inequalities and reinforce their medical authority at the expense of their patients.
 
After spending several years collecting data on the challenges that providers experience in trans medicine, there are two clear take-aways: 1) Providers would benefit from more training opportunities in medical education programs that address gender-affirming interventions specifically, and how to work with trans people for generalized healthcare needs; 2) There is a vital need for more robust scientific data, especially within pharmacology, on the long-term risks and benefits of gender-affirming care.

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Dr. stef m. shuster


Dr. stef m. shuster is an assistant professor of sociology at Michigan State University. Their current research is on the social aspects of gender, medicine, and science which is the subject of their recent book, Trans Medicine: The Emergence and Practice of Treating Gender (NYU Press). shuster serves on the editorial boards for Journal of Health and Social BehaviorGender & Society, and Social Science & Medicine.