Medicine has not traditionally been very kind to lesbian, gay, bisexual, and transgender people. While homosexuality was removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973, and was no longer considered a disorder, attempts by doctors to “treat” it persist even today. Though research and understanding of LGBT healthcare has improved in recent years, the social stigma and discrimination faced by LGBT people leads to health disparities that put them at higher risk for certain conditions. This is also the case with those who are gender non-conforming, or who are born with atypical sex anatomy (sometimes called “intersex,” though the medical term for the condition is “disorders of sex development,” or DSD).
With all that in mind, the American Association of Medical Colleges released new guidelines earlier this week on how to improve med school curricula to better prepare young doctors to treat their LGBT, gender non-conforming, and DSD patients. Authors of the publication spanned all aspects of the medical profession, from psychiatry to genetics to clinical practice. I spoke with Kristen Eckstrand, a fourth-year medical student at Vanderbilt University, chair of the AAMC Advisory Committee on Sexual Orientation, Gender Identity, and Sex Development, and editor of the guidelines about what doctors need to know to treat their patients effectively and respectfully.
Julie Beck: Whose idea was it to come up with these guidelines?
Kristen Eckstrand: A fair amount of evidence had been put forth by a variety of different schools and students saying there is not enough education around issues related to sexual orientation and gender identity. As a result of that, the American Association of Medical Colleges convened a committee in 2012 to take the need for this content in medical education and create guidelines that all schools can adopt when teaching students around issues of sexual orientation, gender identity and sex development.
Beck: What was the need you saw that you were trying to address?
Eckstrand: Over the past 25, or 30 years, there’s been slowly increasing evidence about the health disparities that are faced by individuals who identify as LGBT, who are gender nonconforming, or who have been born with some kind of difference in sex development. There’s a fair amount of evidence saying that these individuals face discrimination and healthcare disparities when accessing and receiving care. There could be challenges with obtaining insurance, challenges being able to disclose their sexual orientation or gender identity, being able to name their spouse as next of kin, having providers being aware of the health concerns of the community. All of these things cumulatively add up.
LGBT individuals, we know, face disparities in mental health care. They are much more likely to attempt and succeed at committing suicide, they’re more likely to have eating disorders, more likely to have certain kinds of cancer, obesity, and cardiovascular disease. All of these things lead to increased morbidity and mortality in the LGBT community.
Medical education itself plays an incredibly important role in this, because if we can train our providers to meet the healthcare needs of the LGBT community, which makes up a good chunk of the American population, we can increase the health of 15 million Americans. That is a substantial number and not something that should be ignored.
Beck: The document also addresses people who have differences in sex development. Can you tell me a little bit about the health disparities that they face?
Eckstrand: I’m really glad that you asked that. There’s less information that we know about the exact disparities faced by individuals born with DSD, but what we do know is that our society, including medicine, really tends to operate on a gender binary. Historically, many of our treatments were aimed at making someone appear male or making someone appear female. So as a result of that, many individuals born with DSD have actually faced overmedicalization, and have had to undergo unnecessary and traumatic genital exams and surgeries. Many individuals with DSD need a fair amount of medical care in order to have their vital organs function, but for many individuals, they can exist as they are, and be respected as they are, needing very little medical intervention. Their bodies may look slightly different from what a typically developing male or female may look like, but this is really about supporting individuals in who they are, not perpetuating societal stigma. They don’t need excess medical care because we need to create their bodies to look in a way that makes society feel more comfortable. This is about patient-centered care.
Beck: How can doctors help address those disparities?
Eckstrand: I would say for starters, don’t make assumptions. Don’t make assumptions of heterosexuality. Don’t make assumptions that certain individuals are going to engage in certain sexual practices. Don’t think that because an LGBT person is walking into your office that the issue they have is related to their sexual orientation. Maybe they just have pneumonia.
Another example: We use pap smears to check for cervical cancer. Men and women can get cervical cancer. We just don’t think of men as being able to have a cervix. But there are plenty of trans men who have a cervix. They need to be screened too. This is about seeing someone as an entire person.
The second piece is to be able to advocate for patients within your institution or within the healthcare setting. There’s the individual patient-doctor relationship, and that is about providing respectful patient-centered care, but you need to advocate for that within your institution as well. Making sure that nondiscrimination policies are inclusive of sexual orientation and gender identity, making sure that visitation policies and next-of-kin policies are all consistent. Working with individuals when state laws may not allow someone the same rights.
Beck: Terminology is obviously a sensitive issue. For example, the guidelines note that some people may prefer to use the term “intersex” when they have atypical sex anatomy, but some may not. Is there conflict between terms that doctors are used to and the terms patients prefer?
Eckstrand: First and foremost, when a patient walks into the doctor’s office, the one thing that a doctor has to be able to do is to use the language that’s respectful and appropriate for the person. The whole idea of what the committee is putting forth is to say that everyone has a sexual orientation. Everyone has a gender identity. And everyone has gender expression and everyone has sex development. This is not about pulling out, per se, people who identify with the LGBT community. This is really about thinking about any person as having an identity along those four domains.
[Doctors can] ask someone, “How would you identify your sexual orientation?” Providers may feel uncomfortable asking it, but there’s nothing wrong with asking that question. So if someone identifies as queer, then I would want to know, “What does queer mean to you? How does that term affect who you love? How does that term affect the sexual practices that you engage in?” And so if you ask about someone’s sexual orientation, just use that term that they use, but make sure you know how that term reflects to healthcare as well.
We expect that people are going to make mistakes with terminology, we all do. Another huge part of what we’re putting forth is really being able to apologize for those mistakes and do your best to continue to get things right. The term LGBT has been a relatively new term in human history and that’s part of what makes this so challenging. These terms are very new for many people who are still alive, they weren’t around 50 years ago. And we don’t know where they’re going to be 50 years from now. But knowing that those things are important to everybody, that’s the approach you need to take. And you’re going to use the language that reflects what the patient wants.
Beck: What is lacking from med school curriculums right now?
Eckstrand: The majority of what is taught about LGBT people is really related to the definitions of sexual orientation and gender identity, as well as things related to HIV and AIDS which is certainly not a disease that is specific to the LGBT community. A lot of what is taught is about sexually transmitted infections.
But things like mental health risks, suicide, coming out, and chronic disease are the things that create disproportionate healthcare burdens for the LGBT community, and these are things are not being taught in medical schools. Medical schools really do stick to the basics. They teach students to ask, “Do you have sex with men, women, or both?” But once students get that answer, they don’t always know what to do with it. If I’m a female and I say I sleep with men, it’s very easy to know what the next question is. “Do you need support with contraception?” But what if I’m a woman who sleeps with other women? What am I at risk for? That’s where students get stuck.
I would say that there is no school in the U.S. or Canada that has really redone their curriculum. Many schools started this process by saying “Oh I’m going to add an elective course or I’m going to do a lunch lecture,” things that are sort of outside of what all students have to receive. Oftentimes those particular activities in the when they’re not part of the core [curriculum], they’re preaching to the choir. They’re not reaching the students who may be making the mistakes later on.
Beck: If schools were to implement these guidelines, what would classes would students take, and what skills would they come away with when they graduated?
Eckstrand: This document discusses how to integrate and assess 30 competencies for how students should be able to perform in a clinical setting. These span clinical care to also being able to work in a team, to being able to advocate for patients within a community. This is about a frame shift from making assumptions about heterosexuality when interacting with a patient to understanding that these things are important for all patients.
This is about going beyond just a lecture this is about having students role playing with other students, watching them interact with patients, and applying that lecture knowledge within a clinical context. Most students will train by working with standardized patients or being observed with actual patients. It’s about making sure that those aspects of a patient—sexual orientation, gender identity, gender expression, and sex development—aren’t forgotten. Because right now they are.
Beck: LGBT health seems to be a newer and more rapidly evolving area of research, and standards on what interventions are appropriate for DSD are changing as well. How does this changing environment affect doctors’ ability to care for patients?
Eckstrand: Right now, quality and safety are big priorities of hospitals and moving forward, as we’re working with curriculum, what we’ll want to know is: How does that actually trickle down to patient care? We’re seeing a pretty striking shift in how people interact with the healthcare system. Historically many people would not come out to their providers. Now more people are. That speaks a lot to the climate of medicine, that it’s becoming more welcoming for these individuals. [It’s important] for us to think about not just understanding the disparities faced by this population but understanding how treatment differs if someone is LGBT. As a result of feeling marginalized and having a fair amount of societal stigma, [many LGBT people] end up with a disproportionate use of tobacco, alcohol, or other illicit substances. One of the reasons those behaviors may have been adopted by a patient [could be] because of an LGBT identity and feeling different.
LGBT-focused treatments actually have pretty strong rates of helping someone quit smoking or drinking, or recover from substance abuse. I think we’re at that tipping point right now where we have a good research base for understanding the disparities, and now we’re moving into helping patients lead happy productive lives.
Beck: As part of a standard physical or office visit, when a doctor is just getting to know a new patient, what questions can they ask to make sure they learn what they need to know about a patient while still being sensitive?
Eckstrand: When a patient walks into your office, many times they fill out a form. On that form, make sure that you’re asking about sexual orientation and gender identity. The second thing you can do when working with patients is clarify the terminology that people have been using for themselves. Always be respectful and use the language a patient uses to define themselves. That is crucial to establishing rapport.
When someone discloses their sexual orientation or gender identity, there are health disparities that are related to identity and those related to behavior. If someone comes in and identifies as gay, you may need to ask them what their sexual practices are. This is true of anyone. Anyone can be engaging in risky sexual behaviors.. Sometimes heterosexual people don’t engage in risky sexual behavior and sometimes they do. It’s not pigeonholing people into that practice as a result of their identity, it’s understanding how one’s identity relates to behavior. Really be very systematic and making sure that patients know the questions you’re asking are for their own health. Ask them about their support network, make sure not to forget mental health screening. Many people in these communities don’t have the same level of support, from family or otherwise.
The final thing, this is a little behind the scenes, but make sure that whenever you document the clinical encounter in electronic health records, make sure you can reflect that accurately using patient-centered language. If a patient identifies as queer, make sure that goes in the health record so that they don’t have to continue to go through this coming out process in the healthcare system. This is really about shaping systems to allow patients to come in and out of the healthcare system easily.