Managing Patients Who Are Transgender

In March, Delaware Insurance Commissioner Karen Weldin Stewart notified insurance companies doing business in that state they could not limit coverage for people who are transgender. Her action brought to 15 the number of states (plus the District of Columbia) banning insurance discrimination of people who are transgender.1 Although the action was overshadowed in the popular press by stories of state legislatures moving to prevent individuals who are transgender from using public restrooms of their self-identified sex, alert health care providers in the state immediately understood the action's importance.

"It was huge," says Karla Bell, PT, DPT, OCS, GCS, director of clinical education and assistant professor in the Department of Physical Therapy at the University of Delaware. "Most states allow insurance companies to exclude any expenses related to transgender care, so for physical therapists (PTs), insurance coverage is an access issue. If you're transgender and you have to pay for your hormone treatments, gender-affirming surgery, and everything else out of pocket, physical therapy isn't going to be a priority. In fact, you probably won't see a PT at all."

As recently as 2013, only 3 states and the District of Columbia had laws like the ones Delaware and 14 other states have passed. More states are expected to follow, resulting in "trans-inclusive" health care becoming increasingly common. PTs nationwide likely will see more transgender patients, posing new opportunities and challenges.

"I've always believed that, as a profession, we have a long way to go in our care of LGBT [lesbian, gay, bisexual, transgender] patients, and of transgender patients in particular," Bell says. Not only do PTs need to think about the unique set of challenges this marginalized population faces, she continues, "but also about the ways we can be respectful and welcoming."

It's true, she says, that the typical PT might see just a handful of transgender patients over the course of any given year. But that's not the point. "It's really a matter of being aware—and of making sure that when those patients do come in to see you, they can trust that you will treat and care for them as individuals."

Minding the Gap

Many patients who are transgender distrust the medical community at large—often with good reason. Their unease is rooted in a well-founded assumption that many providers just don't understand them. "The problem," notes Uchenna Ossai, PT, DPT, WCS, CLT, pelvic health physical therapy program manager of the Center for Restorative Pelvic Medicine at Houston Methodist Hospital, "is that a lot of clinicians"—and she includes physical therapists—"see transgender care as something outside their realm. They figure it's more a matter for gynecology or urology, or that it should be addressed in the primary care arena."

Those perceptions are reinforced by a lack of transgender-specific initiatives within the institutions and associations to which clinicians belong. "For PTs," Ossai observes, "there isn't a lot out there in terms of courses you can take to learn about transgender issues and transgender health care." If you're a PT or physical therapist assistant (PTA) seeking guidance on how best to approach this population, "it's typically up to you to find that information on your own."

The result, Ossai says, is that many of those on the front lines of health care don't know what it means to be transgender (see "Gender Terminology" on page 19), and they fail to recognize that people who are transgender often have distinct health care needs. "That's unfortunate," she adds, "because this patient population is different from others with which we work, and the issues they face do affect their health outcomes. If we're not sensitive to their concerns," Ossai advises, "they may not follow our plans of care, or they may decide to stop physical therapy altogether."

In fact, according to a report by the LGBT civil rights organization Lambda Legal, 70% of patients who are transgender or gender-nonconforming say they've faced health care discrimination.2 In what forms? Survey respondents reported regularly encountering practitioners who refused to touch them or provide needed care, blamed them for their health status, or were physically rough or abusive.

Another survey, this one conducted by the National LGBTQ Task Force, found that 28% of transgender respondents had postponed medical care because they feared disrespect and harassment.3 The realities of health care discrimination, the group wrote, "combined with widespread provider ignorance" of transgender health needs, "deters [these individuals] from seeking and receiving quality health care."

In her position as co-chair of the Delaware LGBT Health Equity State Task Force and at the University of Delaware, Bell has advocated for physical therapy programs to include LGBT cultural competency education in their DPT curricula. While some programs do include small LGBT-focused components, for the most part they are "no where close to where they should be," she says.

Ossai, who is treasurer of APTA's Section on Women's Health (SOWH), says she learned very little about transgender health care during her own time as a PT student. (She later completed a fellowship that focused on health interventions for LGBT youth who are homeless). "It's definitely something that needs to be addressed on a much larger scale," she says. "Not only in PT education programs, but also by APTA and through continuing education."

Although APTA's Code of Ethics for the Physical Therapist does not specifically address people who are transgender, Principle 1 states that "Physical therapists shall respect the inherent dignity and rights of all individuals." Principle 1A adds, "Physical therapists shall act in a respectful manner toward each person regardless of age, gender, race, nationality, religion, ethnicity, social or economic status, sexual orientation, health condition, or disability." Furthermore, Principle 1B states, "Physical therapists shall recognize their personal biases and shall not discriminate against others in physical therapist practice, consultation, education, research, and administration."4

Earlier this year, Ossai and others in the SOWH created a task force to develop resources for sexual orientation and gender identity-related issues that PTs should consider as they practice. It hopes to complete that work later this year.

Meanwhile, PTs such as Keelin Godsey, PT, DPT, who works at Spaulding Outpatient Center in Orleans, Massachusetts, lament that transgender health care continues to feel "like a taboo subject" that few organizations want to address. "If you're a PT, you have to learn on the fly," says Godsey, who was born and remains legally female but identifies as male. "Which is too bad, because it means that many therapists who truly mean well and want to provide the best care for their patient" may not have the knowledge or resources to do so—or "may come across in an offensive way without even realizing it."

Creating a Friendly Practice

So, what can PTs and PTAs do to best ensure their patients who are transgender receive the care they deserve? Bell, who identifies as gay, says that when she enters a health care facility she looks for "clues" that the people who work there "actually know something about my community and care about the things that matter to me."

Clinics can offer clues for transgender patients (who may identify as gay, straight, or bisexual) in all kinds of ways, she says—ranging from providing staff and clinicians with cultural competency training, to ensuring that written nondiscrimination statements specifically protect transgender rights, to creating a transgender-friendly waiting room. "It could be something as simple," Bell says, "as posting a rainbow flag at the front desk, or adding The Advocate to the magazines in the waiting room, or displaying a poster from the Fenway Institute"—an interdisciplinary center in Boston focusing on national and international health issues, especially those related to LGBT communities.

Properly worded intake forms also are important, says Daniela Mead, PT, DPT, MPA, of Good Shepherd Penn Partners Specialty Hospital in Philadelphia. When intake forms allow patients to choose only between "male" and "female," without any opportunities for patient input, a clear if unintended message is sent to people who are transgender, Mead says: "We haven't taken steps to be respectful and inclusive of your community."

Worse, inadequate intake forms leave little room for patients to convey important information that may facilitate their care, Mead adds.

"If someone who identifies as a woman comes in reporting hip pain and I don't know that she is biologically male, I'm not going to screen for something like prostate cancer," Mead explains, "because that's not going to be on my radar. On the other hand, when an organization's intake forms are inclusive—asking such questions as 'What was your gender assigned at birth?' and 'What is your current gender identity?'—an opportunity has been presented to open a dialogue that will help the PT with diagnosis and plan of care."

Godsey agrees. "Intake forms should give the patient the opportunity to tell you everything you need to know," he says. "As a PT, you can't simply go up to a patient who looks androgynous and ask, 'Excuse me, are you transgender?'" Nor, he adds, should a PT assume a patient identifies as male or female based only on appearance. "If you're wrong," Godsey notes, "you're likely going to come across to that person as wildly offensive."

A sensitively worded intake form resolves issues around biological identification—and pronoun use—by "allowing the patient to take ownership," Godsey says. "If people are comfortable [designating a gender] they're going to indicate it on the form, and if they're not, they're not. Either way, though, they're going to appreciate that you're showing respect for who they are."

Godsey has worked in settings in which colleagues and staff have used the word "it" in reference to certain patients. "Never to me, or to the patients' faces, but when they thought I wasn't listening, and behind those patients' backs. That's just not appropriate," he says. "If you don't know how to address a patient, just ask, 'Do you have a preferred pronoun?'"

Bathrooms are another concern of many transgender patients, Ossai says. "While it may not be feasible to do this in every facility, the ideal is to have gender-neutral restrooms."

Another option, suggested by Godsey, is to re-designate the restroom reserved for people with disabilities as open to anyone, "regardless of gender identity or expression." Having a place where people who are transgender can safely attend to their personal needs "is a very big deal," he says.

Even in his role as a PT, Godsey sometimes runs into bathroom-related issues—at continuing education courses, especially those that include manual labs. "During breaks, where am I supposed to go?" he asks. "You know, everyone's seen me in my sports bra—and they're already giving me weird looks—and now I'm going into the men's bathroom? It's really difficult and uncomfortable."

In the Treatment Room

Once it's established that a patient is transgender, it's important to appreciate that each person is individual in their gender identity and how it manifests. "Some people may have had gender-affirming surgery," Bell notes, "while others may not have had surgery because they couldn't afford to, or they didn't feel they needed to."

Whatever the case, "Be aware," she recommends, "that when you're working physically with people who are transgender, they may have some disassociation, dislike, or detachment related to parts of their body that they still may have."

Godsey's suggestion? If the treatment plan involves manual therapy anywhere near the patient's chest or groin, "be sure to discuss it with them in advance, as they may not want you to touch the area where you plan to touch."

From there? Everything depends on the person in front of you, says Pamela Morrison, PT, DPT, MS, BCA-PMD. She sees many patients who are transgender at her private practice in New York City. Because her clinical focus is on pelvic floor, neurologic, and women's and men's health issues, many patients come to her after having undergone reconstructive surgery of genitalia. "Patients might come in reporting generalized pelvic pain, pain with urination, or pain during sexual intercourse. Sometimes," Morrison adds, "they've been sent to us by the surgeon for instruction on how to use a dilator to prevent vaginal stenosis."

Most of her patients are taking hormones, and many are on psychotropic drugs or pain medications, as well. "It's always important to take a thorough history and completely understand what that patient is taking and how that might affect your plan of care," Morrison says.

What other types of conditions might a PT encounter in a patient who is transgender? A female-to-male patient with limited mobility in his neck and shoulders might have scar tissue buildup following breast removal surgery. Or a patient might have persistent low back pain in the wake of genital surgery. "In that case," Morrison explains, "the issue may be fascial pull from the perineum, which in turn might require tissue mobilization to relieve fascial tension and reduce pain."

If a condition requires intravaginal or intrarectal work, Morrison says, "I would always recommend that the PT refer that patient out."

Ensuring Strong Transitions

That leads to another important consideration involving the treatment and care of patients who are transgender: How do you ensure that the providers to whom you refer such patients are themselves "transgender friendly"?

"If a patient needs a neurologist, I shouldn't have to think about whether the neurologist is going to look at patients differently because of their gender identity," Godsey says, "but it's always in the back of my mind."

Ossai agrees. "You have to ask [providers] up front, 'Do you have a lot of experience with this community, or do you know other providers who do?' That has to be part of the conversation."

Similarly, Bell says, it's critical for PTs to realize that they may be the only health care provider their patient has opted to see. "Because we have direct access now, it may be up to us to do the screening work for primary care," she notes, and refer the patient as necessary to other health care professionals. Sometimes, she adds, that requires asking patients difficult questions, such as, "I understand this might be a sensitive area for you, but for your life, health, and best practice, are you still getting the right primary care?"

Last year, Ossai saw a patient who was "still transitioning, in the sense that he had yet to come out to his family as a man." The patient came to her for fecal incontinence issues and was understandably nervous about what lay ahead. "But as it turned out," she recounts, "when he realized I was on his side—that I wasn't there to judge him but just wanted to help—he really opened up and told me everything he was going through."

She asked the patient about his health care "team" and if he needed additional resources to achieve his goals. Ossai also asked about his job and if he was worried about his insurance coverage. When he admitted that insurance was an issue, and that he wasn't sure he even could afford to come in, she talked to him about his plans to come out to his employer. She listened as he said he would wait to inform the employer, fearing that he might be fired—a possibility under Texas law.

Ultimately, Ossai says, her patient had his breasts removed, and she referred him to a gynecologist at a community health center who had extensive experience working with individuals who are transgender. As the patient's stress dissipated and his anxiety disappeared, his fecal continence problems stopped.

"I wound up performing a lot of physical therapy in that case, but much of what we did together involved simply talking things through," Ossai observes. "In the end, he did quite well. That's what really matters."