Taking better care of transgender patients

Hospitals working to improve resources, education, and training for transgender care.

Patients who identify as LGBT (lesbian, gay, bisexual, or transgender) face discrimination in health care, but this risk is particularly acute among the last of those categories—people who identify with a different gender than the sex they're assigned at birth. Research shows marked disparities for transgender people, who may avoid care due to fear of discrimination or be turned away when they seek it.

In a 2008 national survey, 19% of transgender patients reported having been denied health care by a clinician because of their gender identity, 28% reported verbal harassment in a medical setting, and 28% postponed care because of discrimination and disrespect. The survey also reported that transgender people have higher odds of being HIV-positive and using drugs, alcohol, or tobacco than the general population.

Photo by Thinkstock
Photo by Thinkstock

But some hospitals around the country are working to improve these statistics through resources, education, and training.

“By doing this, we're not just engaging in a community benefit project, but it's something that actually leads to an actual increase in the number of people coming for care,” said Harvey Makadon, MD, FACP, director of education and training at the Fenway Institute, a Boston nonprofit that works to ensure access to quality, culturally competent care for LGBT patients.

The issue

In January, when Beck Bailey broke his leg while skiing in southern Vermont, his subsequent 2-week hospital stay wasn't horrible, but it wasn't easy.

Mr. Bailey said his immediate concern after the accident—aside from realizing he had broken his leg very badly—was if he'd be treated with dignity. “I'm a transgender man who has not had any lower surgery, so at some point in treating me, providers will know or need to know my transgender status,” he said. “I kind of knew when I was laying there waiting for the ski patrol that I would certainly be ‘outed’ or ‘out’ myself, and that that would be something that I would have to contend with.”

By the time Mr. Bailey arrived at the small regional hospital's emergency department, it had been 3 or 4 hours after the initial break. “So I said to my nurse, ‘While they're figuring out what I need, I really need to urinate,’ and she said, ‘OK, you're going to have to help me with that,’ and I thought that was such a great response,” he said.

Mr. Bailey told the nurse she should do “whatever you do with a person who has a vagina.” He added, “She was definitely a little uncomfortable, but I thought the way she handled it was pretty cool—at least [she] invited me to be part of a conversation and didn't pretend to know everything when she didn't.”

However, not all hospital clinicians were so willing to adjust their care. As he prepared for surgery, questions arose about whether or not he could continue hormone replacement therapy. “The endocrinologist on duty said, ‘We don't allow cisgender [non-transgender] men to take testosterone when they're having surgery.’ And I was like, ‘OK, I understand that. I'm not a cisgender man. It's a different medical issue,’” Mr. Bailey recalled.

He suggested the physician call the Fenway Institute and speak to an expert in transgender medicine. After that conversation, the clinicians determined he didn't have to discontinue the hormone treatments. Although the physical consequences of stopping the therapy for a week aren't necessarily deleterious, Mr. Bailey said the psychological effects would've been harmful. “From my perspective at the time, it was kind of like another indignity,” he said.

Although the challenges he faced may have been typical, Mr. Bailey was better equipped to respond to them than most transgender patients. He is the deputy director of employee engagement at the Human Rights Campaign (HRC) Foundation's Workplace Equality Program. Mr. Bailey added that the self-advocacy he displayed may be uncomfortable for some transgender people, so clinicians ultimately need to be informed about providing competent care without patient guidance.

“I am in a particular role where I am an advocate, and I am out, and I talk about it all the time, so I don't have much problem advocating for myself,” he said. “Not everybody has that same kind of experience and agency that I do—not to mention the fact of what happens when you're unconscious and when you don't have the capacity to advocate.”

Equality for all

Transgender patients probably make up 0.1% to 0.5% of the U.S. population, estimates the “Fenway Guide to Lesbian, Gay, Bisexual, and Transgender Health,” published by ACP and the Fenway Institute. Yet hospital and health system leaders have only begun focusing on their care relatively recently.

In 2011, The Joint Commission created a standard that requires hospitals to prohibit discrimination in their policies, including that based on sexual orientation and gender identity. “In most cases … hospitals may have added sexual orientation a while ago, but to go the final step and add gender identity really didn't start to take off until after 2011,” said Tari Hanneman, deputy director of the HRC's health and aging program.

She also oversees the Healthcare Equality Index (HEI), a survey that evaluates hospitals' policies and practices related to LGBT patients, visitors, and employees. It has shown improvements, with 97% of responding hospitals having nondiscrimination policies in 2014, compared to just 29% in 2010.

“If you're participating in the HEI, you're probably among the hospitals that care the most about these issues,” said Ms. Hanneman. “It's a self-selected group, so these are the cream of the crop.” But of more than 500 facilities that did not provide responses to the 2014 HEI survey, the HRC found that only 51% had fully LGBT-inclusive patient nondiscrimination policies.

Another national impetus for transgender-affirming policies is Section 1557 of the Affordable Care Act (ACA). “It's actually the first time that sex was included as a category in a nondiscrimination law in health care,” said Ms. Hanneman.

The HHS Office for Civil Rights (OCR) in September proposed new rules that provide explicit protections from discrimination on the basis of sex stereotyping and gender identity in health care and insurance. “These proposed regulations point to a strong need for hospitals and other health care providers to really make sure they have the policies and procedures in place to ensure non-discrimination when it comes to serving transgender patients,” Ms. Hanneman said.

A step further than a nondiscrimination policy is to have a policy document that is specific to transgender patients, she said. This could include how to handle shared room assignment of a transgender patient, how to use appropriate names and pronouns, and how to provide appropriate restroom access. Some policies will need to be facility-specific, but the HRC and Lambda Legal, a national legal organization that supports LGBT people and those with HIV, offer a resource guide to help hospitals get started.

The HEI doesn't have statistics on how many hospitals have developed transgender-specific policies but has included a question about it in this year's survey, Ms. Hanneman said.

Hospital-level changes

Some hospitals have been called out for their failures in this area. The Brooklyn Hospital Center in New York was accused of violating the antidiscrimination provision of the ACA when it assigned a transgender woman—who presented as a woman at the hospital—to a double occupancy room with a male patient.

The hospital reached an agreement with the OCR to meet several conditions to ensure the proper care of transgender patients, such as revising its admissions policies to ensure that all patients (including transgender and gender non-conforming individuals) receive equal access to services, according to a July news release from OCR.

Assigning transgender patients to hospital rooms in accordance with their self-identified gender, unless they request otherwise, is recommended by the HRC and Lambda Legal.

Brooklyn Hospital also agreed to develop a new intake process that gathers both legal and preferred names, as well as providing opportunities for patients to identify their sex and/or gender. To be inclusive, such identification should allow more than 2 options, experts said.

“The intake forms can't just be gender binary; they can't just say male or female. They also have to be inclusive of other options, because there are some people who will tell you that they don't identify as either,” said Robert J. Saqueton, MD, FACP, a former inpatient and outpatient teaching attending who now serves as medical director for primary care services at the Lake County Health Department and Community Health Center in Chicago.

At Partners HealthCare in Boston, sexual orientation and gender identity have become a standard field in the electronic health record. “But along with that needs to come education of clinicians as to how to deal with that information when they see it and whether or not to talk to somebody about it or not to talk to somebody about it,” said Dr. Makadon, who is a professor of medicine at Harvard Medical School. “What you don't want are people just asking arbitrary questions about someone's life experience.”

For example, clinicians may need to know a patient's anatomy to treat genital symptoms, post-operative fever, or an abdominal lump. A medical record inclusive of sex assigned at birth and gender identity can facilitate this sort of “anatomical inventory,” Dr. Makadon said.

Clinicians can take some simple steps to be transgender-friendly in their individual patient interactions. For example, in order to make sure you're using a patient's preferred name and gender pronouns, simply ask “What do you go by?” recommended Jesse Ehrenfeld, MD, MPH, an anesthesiologist at Vanderbilt University Medical Center in Nashville, Tenn. “There's some very pragmatic things that transgender patients need when they come into a health care system,” he said.

Basic policies around admission, room assignments, and nondiscrimination are an important place to start, he advised. “Also, make sure that those policies aren't just filed away somewhere inaccessible, but that they are visible and out in front,” he said.

Taking the next step

Some hospitals make even greater efforts to welcome transgender patients. Mount Sinai Health System in New York has worked to become a leader among hospitals on this issue by developing anti-discrimination policies for employees and patients, training staff and students, and founding hospital diversity councils, which include leadership and front-line staff.

“They're very, very active. The LGBT employee resource groups and hospital diversity councils often initiate special programs and direct activities around education and training to implement policy,” said Barbara Warren, PsyD, director for LGBT programs and policies in the office for diversity and inclusion at Mount Sinai Health System. Resource group and council members facilitate in-house training and conduct assessments across the system to determine needs for training materials or resources. In addition, the medical school at Mount Sinai has added content on transgender-specific clinical care to the training curricula for students and residents.

A year ago, the health system began creating a center for transgender health—a comprehensive, integrated, multispecialty system of care for transgender people across the system. “Services will be across all sites because we have specialists across all sites who can do different types of interventions for transgender people, including surgery,” Dr. Warren said.

The project was expedited by CMS's decision last year to begin paying for some transgender care, including transition-related care, hormones, and surgery. Subsequently, New York State last March lifted the ban on Medicaid payments for these services.

“That really opened up the possibility here in the metropolitan area that we could serve transgender people who historically either had to leave the state and self-pay a private provider to acquire any kind of surgical help that they needed,” Dr. Warren said. Mount Sinai plans to roll out the center in 2016, she said.

Vanderbilt launched a program for LGBTI (intersex) health 4 years ago to ensure that trainees have opportunities to learn about how to care for this patient population. An advisory group made up of LGBT patients and their families helps give guidance. The community also assists with the hospital's Trans Buddy initiative, which pairs transgender patients with trained volunteers who accompany them to primary care appointments and emergent care on an on-call basis.

Vanderbilt also has LGBT-inclusive brochures readily available, as well as many clinicians who wear rainbow pins as a sign of being an ally, said Dr. Ehrenfeld, who is co-director of the LGBTI program.

Resources for improvement

The biggest barrier to improvement is that most people, including hospital staff, don't really understand what it means to be transgender, according to Dr. Ehrenfeld. The Fenway Guide notes that the common practice of including transgender people in LGBT leads to the misconception that all transgender people identify as lesbian, gay, or bisexual. In fact, the community is diverse, representing the full range of sexual identities and behaviors and an assortment of racial, socioeconomic, and generational identities.

The Veterans Health Administration (VHA) faces some additional barriers in providing inclusive care. Transgender people historically have not been allowed to serve openly in the military, as the repeal of the don't-ask-don't-tell policy only affected lesbian, gay, and bisexual military members.

“So technically, there should not be any transgender veterans; however, when we look at the data, rates of transgender veteran status are 3 to 5 times elevated above what we see in the general population,” said Jillian Shipherd, PhD, director of the LGBT Program in the VHA's Office of Patient Care Services.

The VHA put into place a national transgender directive in 2011, guaranteeing transgender veterans access to health care. Since policy doesn't automatically change culture, however, online educational tools around transgender health are available to all Veterans Affairs employees and include basic facts about gender identity, unique mental health needs, and hormone therapy, Dr. Shipherd said. These free training programs recently became available to the public.

There are also 2 clinical consultation programs available to clinicians in VHA facilities who are less experienced in transgender health. Transgender SCAN-ECHO allows a national team of experts to virtually train teams of clinicians across the country, including in remote regions, on transgender medicine, Dr. Shipherd said. The second clinical consultation program, transgender e-consultation, allows any VHA clinician to send a question about a patient's care, with consent, to an interdisciplinary team of clinicians, who then offer patient-specific clinical advice, she said.

Clinicians practicing outside the government can also get help providing transgender care (see sidebar). Resources are available from The Joint Commission, the HRC, the Fenway Institute, the National Coalition for LGBT Health, and more. “There's great resources out there, but resources are only as effective as people know about them and can access them,” Dr. Warren said.