LGBTQ care must go beyond guidelines

To make health care more inclusive, physicians can include in the medical record the use of preferred names and pronouns, information on gender-affirming hormones and surgeries, and a record of the organs that patients have and that they were born with.


A clinician's care can be perfectly concordant with guidelines yet still fall far short of what's needed for an LGBTQ patient, participants learned at the American Society of Clinical Oncology (ASCO)'s 2020 virtual conference, held this spring.

An abstract presented virtually at the meeting used the case of a transgender man with ovarian cancer to evaluate the knowledge and skills of 25 medical trainees in Argentina. All of the trainees treated the patient's ovarian cancer according to National Comprehensive Cancer Network (NCCN) guidelines.

LGBTQ patients have higher rates of some factors negatively affecting health including depression anxiety suicidality smoking and substance use and homelessness Image by ADragan
LGBTQ patients have higher rates of some factors negatively affecting health, including depression, anxiety, suicidality, smoking and substance use, and homelessness. Image by ADragan

Yet the study by Gil Deza and colleagues found a number of other problems with the care: 20% of the trainees lacked knowledge about transgender people, 12% did not use the patient's preferred pronoun, and 68%– discontinued his testosterone.

“It's not just about being kind or accepting while following guidelines,” said Juno Obedin-Maliver, MD, MPH, MAS, an assistant professor in obstetrics and gynecology at Stanford University School of Medicine in California who spoke at ASCO. “Accurate science and medical care requires not only that we follow the guidelines but that we ensure that the guidelines reflect the diversity and realities, both scientific and experiential, of our communities.”

Dr. Obedin-Maliver pointed out, for example, that NCCN guidelines and survivorship materials discuss ovarian and cervical cancer only in the context of cisgender women. “I know that a transgender man who has a cervix or someone who is facing ovarian cancer would be hard pressed to think about themselves in terms of screening or treatment or these survivorship materials,” she said.

LGBTQ patients have likely faced many obstacles to optimal health long before they get to cancer survivorship education. At least 4.5% of the U.S. population is LGBTQ, across all age groups, races and ethnicities, and socioeconomic status, said Dr. Obedin-Maliver, who is also co-director of The Population Research in Identities and Disparities for Equality (PRIDE) Study , the first large-scale, long-term U.S. health study of people who identify as LGBTQ or another sexual or gender minority. LGBTQ patients have higher rates of some factors negatively affecting health, including depression, anxiety, suicidality, smoking and substance use, and homelessness.

“The health disparities that I've discussed are not—and I want to stress this—inborn, but rather, related to minority stress, or the cumulative experience of walking through a world filled with discrimination and stigma and its cumulative effects,” Dr. Obedin-Maliver said.

Health care is included in that world. She pointed to the 2015 U.S. Transgender Survey of over 27,000 transgender people, in which 33% reported at least one negative experience with a clinician in the past year and almost 25% said that they had avoided seeking medical care because they feared mistreatment.

To try to remedy that, health care should reflect the experiences of LGBTQ people, allowing for diverse demographic characteristics as well as names and pronouns. The medical history and medication list should include information on gender-affirming hormones and surgeries as well as on the organs that patients have and that they were born with, Dr. Obedin-Maliver said. “For example, most transgender men still have a uterus and cervix, and gender-affirming surgery for transgender women does not remove the prostate,” she said.

It's helpful to focus on three principles when enhancing care, Dr. Obedin-Maliver said: LGBTQ people are different from cisgender and straight people, they are the same as cisgender and straight people, and they are unique and different from each other. For example, a transgender man will experience cervical cancer differently than a cisgender woman, but a man with a cervix needs to be screened in the same way as a woman with a cervix, she said.

Similarly, “We cannot say, ‘I've taken care of one transgender man with cancer, I know how to take care of them all.’ Otherwise medical training could be done by robots, and it wouldn't take so long to be trained, and we wouldn't call ongoing clinical care ‘medical practice,’” she said.

Dr. Obedin-Maliver asked her audience to think of their own medical practices and consider what happens when patients walk through the door. “If a transgender man with ovarian cancer came to your practice setting, would he be welcomed? Greeted appropriately with the correct names and pronouns and routed to the right care provider?”

Next, she said, think about what happens once the patient comes into the exam room.

“Would you know what questions to ask, what exam to do, and what recommendations to make during your history and physical, assessment, and plan? And if you had to refer a patient to a colleague, would you know how to effect that referral? What features to include? How your patient would be taken care of? Would you be confident that they would receive respectful and appropriate care?”

Also, she advised, think about what makes a practice setting a “destination of choice” for LGBTQ patients. Changes to make to a practice to better meet the needs of diverse patients can involve updates to intake forms, electronic medical records, and billing systems.

Both new and experienced clinicians often have much to learn about caring for LGBTQ patients, Dr. Obedin-Maliver said. “Start with your own training and enhancing your understanding,” she advised, by, for example, incorporating social orientation and gender identity into existing educational and clinical interactions.

Educators and guideline developers should do even more, she said, generating the awareness and conducting the research necessary to ensure that both guidelines and young physicians are optimally developed to care for all patients. “So therefore, all components of comprehensive cancer care need to be reimagined to understand and accept differences between sex, gender, sexual orientation, and the diversity of people's lives,” Dr. Obedin-Maliver said. “[Everyone has] a role to play in improving both interpersonal and structural stigma within cancer care and education.”