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Turning points in transgender medicine

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Karen Titus

September 2017—The intricacies of transgender medicine are many. They are unique; they are universal. A la Walt Whitman, they contain multitudes: identities, challenges, questions, even fears. But the first step toward comprehending them can be simple. Tim Cavanaugh, MD, started with a cup of coffee.

Dr. Cavanaugh, of Fenway Health, Boston, began delving into the topic about a decade ago, when an assistant administrator at his previous job, at a small community health center in Rhode Island, told the center’s leaders that the transgender population was medically underserved. The administrator had ties to the local trans community. Dr. Cavanaugh was intrigued. He began talking at length with his colleague, asking questions, and—yes—going out for coffee. That spurred further reading and research.

The health center expanded its views, too. “We started providing care to what we assumed would be just a handful of people,” says Dr. Cavanaugh. So much for predictions. “Within two years, I probably had about 200 transgender patients.” Eventually his own interests led to his current job, where he’s co-medical director for the transgender health program.

Everyone has to start somewhere. For patients seeking care, that first step is often the laboratory, an encounter that can be fraught. At the risk of setting up what sounds like another “a priest, a rabbi, and a fill-in-your-subject-of-choice walk into a bar” joke, consider the various scenarios that can unfold when a transgender patient sets foot in a phlebotomy station.

Second of two parts. In August, ‘Making it personal: transgender medicine’

Ideally, nothing happens beyond the ordinary. Greeting patients and confirming their identity shouldn’t be new to phlebotomists, says Bruce Levy, MD, associate chief medical informatics officer, Geisinger Health System, Danville, Pa., and professor of pathology, Geisinger Commonwealth School of Medicine, Scranton, Pa. Many patients, regardless of sex or gender, have preferences about how they want to be addressed: formally, informally, name, nickname, title. In that sense, this aspect of transgender medicine is nothing new, he says. “It may not be dissimilar to generations ago when the issue was over Miss, Mrs., or Ms.,” he muses.

Of course, that particular dialogue was hardly Socratic, either. Landing on the right preference can be difficult. A patient may have a beard or other traditionally masculine identifiers, yet be listed in the laboratory information system or electronic health record as female. What then?

Geisinger has been working through these issues of late and was set to launch, at the end of September, a systemwide initiative to address the needs of transgender patients. As part of that effort, the EHR will have a field that allows caregivers to see a patient’s preferred or recognized form of gender and address. “So a phlebotomist will know in advance whether a patient wants to be addressed as Mr. Smith, Bob, or Roberta,” says Dr. Levy.

The plan at Geisinger is to retain the standard sex fields of male and female. “But we’re having discussions as to whether there should be a third option,” Dr. Levy says. There may also be fields to address sexual orientation, since that could also drive certain lab tests.

Dr. Levy points to clinicians within his system who have been treating transgender patients for years. “They already know how to work around this. We want to make sure others will become aware, too.” Much of it boils down to respect for patients, he continues. But a patient’s gender identity can affect what tests can be ordered, reference ranges, and billing. The name is only the start.

Handling names correctly can also affect whether transgender patients will be comfortable even seeking care, says Susan Butler-Wu, PhD, D(ABMM). Patients should be cared for in a way that affirms their gender and does not make them feel stigmatized, says Dr. Butler-Wu, associate professor of clinical pathology, and director, medical microbiology, LAC+USC Medical Center, Los Angeles.

Dr. Butler-Wu

Dr. Butler-Wu

Again, that often starts with the laboratory. “Until we can capture gender on the EMR and the LIS, we’re going nowhere,” Dr. Butler-Wu says, echoing the frustration of many who say that vendors generally have not caught up with the needs of transgender patients and those who care for them. That can leave everyone uncomfortable. Phlebotomists don’t want to make assumptions about someone’s gender; patients don’t want to disclose that information in every encounter. Far better, she says, to capture that information once, if possible, ideally on the EHR.

At the University of Iowa Hospitals and Clinics, Iowa City, the local transgender population identified outpatient phlebotomy waiting rooms as uncomfortable areas to go to because patients are called out by name, says Matthew Krasowski, MD, PhD, vice chair, clinical pathology and laboratory services, and clinical professor of pathology. “This makes for a difficult start to the encounter even when the phlebotomist otherwise does an excellent job.” That was a wake-up call for him and his colleagues, he says, and it might be for other lab professionals who think transgender health doesn’t have an impact on their work. It can be tempting for those in labs to assume their job starts when the specimen hits the lab, and not when the patient hits the waiting room. “Until I got involved in it, I hadn’t really thought about the phlebotomy angle. But we can’t hide from the fact that the face of the lab often is phlebotomy,” he argues. “Whatever we can do to make our patients feel more welcome is important.”

Dr. Krasowski

Dr. Krasowski

Simply having phlebotomists and frontline staff use patients’ preferred names was a welcoming step at Iowa, Dr. Krasowski says. Much work went into patient-greeting scripting, as part of a preferred name project. He gives the example of a patient sitting in a waiting room who wants to be called Michelle, even if her name is still listed as Michael in the medical record. “This is a hugely inclusive thing for the transgender population,” he says.

This particular effort has succeeded, he says, in no small part because when the laboratory began implementing it, the two physicians who run the LGBT clinic made a presentation to pathology staff, providing background and using lab-specific examples to illustrate how to provide more inclusive care for the trans population. While online education and training have their place, the face-to-face meeting “was hugely important. The reaction I got from a lot of our departmental staff was, ‘We had never thought about these issues.’ It seemed very abstract to them,” Dr. Krasowski says.

While most staff understood the concept of preferred name, understanding preferred pronouns has been stickier. Simply providing staff with more exposure to use of nonbinary pronouns (e.g. they, ze, zir, ne) is useful, but some staff may find it challenging to become comfortable with those pronouns. “It’s helpful for them to at least hear what’s out there,” he says. “Up until recently, the trans population has been sort of invisible in health care.”

Dr. Krasowski recalls having only about 40 minutes worth of training in transgender care when he was in medical school in the mid-1990s. At the University of Iowa and other medical schools, that’s starting to change. “It’s a lot easier to try to get to people early and expose them to these concepts, than to try once they’re out in practice. If you look at lab staff, many may have had no exposure to this in their formal training.” (That does appear to be changing with younger generations, he adds, noting that his teenage daughters “are growing up with this. Every generation knows a little bit more.”)

Figuring out how to include preferred names and pronouns in the EHR and LIS has been challenging as well, and he and his colleagues are also considering ways to incorporate fields for birth gender and current gender. It quickly became evident to Dr. Krasowski and his colleagues that none of their downstream systems in pathology, including middleware, have fields for preferred names. “When we call critical values to clinical units, we may be using the official name, but the nurse is using the preferred name.”

Complicating the issue, preferred names aren’t always preferred from a regulatory perspective, he says. Blood product administration, for example, has specific regulations on verification of names. Classification of gender for determining blood donor eligibility also needs more clarification, Dr. Krasowski says. The FDA has essentially said that each blood center can decide, for the purposes of donation, how patients identify, he says. But certain common questions that ask about, say, men having sex with men, may be more difficult to answer in the trans population. “What if you’re now a trans female?” Dr. Krasowski asks. (A review article he coauthored addresses these issues in more detail: Gupta S, et al. Laboratory Medicine. 2016;47[3]:180–188.)

Dr. Cavanaugh and his Fenway colleagues have also struggled with the EHR issue. The gender marker on each patient’s chart matches the gender marker on the patient’s insurance. “We don’t change that marker until the patient has changed it with their insurance company,” he says. It boils down to billing: It can be challenging to submit bills for items like gynecologic care when the records don’t match.

But that creates other issues, “as you can imagine,” Dr. Cavanaugh says. So to ensure patients are addressed correctly and with respect, the center’s EHR has a field for patients’ preferred names. Staff have also created color-coded markers, which appear in the field normally used for patients’ photos. A pink color notes that the patient identifies as female and uses female pronouns, regardless of what the insurance information says; a green marker identifies someone who is transmasculine and uses male pronouns; and a yellow marker identifies patients who are nonbinary (also known as gender fluid) and use nonbinary pronouns. (A transmasculine person is assigned female at birth but identifies more with masculinity.)

Patients at Fenway have higher expectations of care providers than they might elsewhere, says Dr. Cavanaugh, given the center’s focus on the LGBT community. With that in mind, “We train our laboratory people, and certainly our phlebotomists, to try to use gender-neutral pronouns. And we write the preferred name on our lab labels for every single patient who comes in,” he says. But when patients are sent to the lab, the order doesn’t address the patient’s gender or what medications they might be taking. And early on in the course of a patient’s affirmation, their appearance may not seem consistent with their internalized gender. “It’s certainly difficult for lab personnel, and certainly for phlebotomists,” he says. “We frequently have phlebotomists and lab personnel who make mistakes in regard to that. And it can be fairly emotionally charged for some patients.”

Even once the patient is comfortably through the door, the EHR and LIS can still hinder care.

“A transmasculine person may be listed as female or male in their chart, depending where they are in the process of changing their insurance information,” Dr. Cavanaugh says. The same holds for those transitioning in the other direction, of course, and for those who may be undergoing a partial transition.

For laboratories, an obvious question becomes, what does that imply for reference ranges?

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