AMA Journal of Ethics^®

Abstract

Over the past decade, ways of defining self in relation to gender identity and forms of expression have widely expanded. Along with this expansion of identifying language, there has been an increase in medical professionals and clinics specializing in providing gender care. Yet many barriers to providing this care still exist for clinicians—including their comfort with and knowledge about collecting and retaining a patient’s demographic information, respecting the name and pronouns a patient goes by, and providing overall ethical care. This article shares one transgender person’s numerous health care encounters over 20 years as both a patient and a professional.

Lessons to Explore

Over the course of my professional career, I have had the great honor and privilege to observe how current institutions provide gender care and to share my perspective on what works well and what creates further confusion or potential for harm. The following lessons complement my 2016 publication in the AMA Journal of Ethics,¹ with additional guidance from past and present research.

Lesson 1: Understanding transgender health means understanding needs of transgender people. Accessing health care for transition-related reasons or other needs can be difficult for transgender patients. A 2015 survey of nearly 28 000 transgender respondents found that 55% were denied coverage for transition-related surgery, 23% did not see a doctor for fear of being mistreated, and 33% reported avoiding doctors due to inability to afford care.² The risk of suicide and substance use is also disproportionately higher among transgender people than in the US population as a whole,with 40% of transgender people and 4.6% of Americans reporting having attempted suicide at least once in their lifetime and 3 times as many transgender people as people in the US population using illicit drugs or drugs not prescribed to them.^2,3

In order to better advocate for patients’ access to care and coverage, it is important for health professions students and professionals to have awareness of the factors that exacerbate patient vulnerabilities, such as pervasive social and cultural discrimination and lack of employment or insurance coverage.

Lesson 2: Allow space for—but do not force—patients to share information about sexual orientation and/or gender identity at each health care visit. It is now recommended to routinely collect demographic information related to a patient’s sexual orientation (SO) and gender identity (GI), otherwise referred to as SO/GI.^4,5,6 There are many opportunities to allow for patient self-disclosure—including the name one goes by and one’s pronouns, sex, gender, and orientation—during a health care visit. Self-disclosure begins with the initial paperwork and extends to the exam room. Demographic information may be collected through self-reporting at intake or registration, reporting by caregivers, or conversations with clinicians.⁷

While health care organizations and agencies recommend completing these fields in the electronic health record to improve access to and quality of care,⁶ it is important to allow the option to disclose or not. In addition, there are practical barriers to data collection that stem from clinicians’ discomfort with and lack of training in collecting and interpreting information and from patients’ hesitancy to disclose.^5,6,7 Another factor to consider is the impact and influence of minority stress—including the patient’s expectation of rejection, identity concealment, and internalized stigma⁸—and whether it is appropriate to collect information about SO/GI based on the reason for the patient’s health care visit.

Lesson 3: Take care not to “out” patients who aren’t “out” to everyone; ask patients what information to document in their health records and preserve confidentiality. It is not uncommon for transgender patients to avoid sharing information about their identity and medical history with health care professionals due to past negative experiences in health care settings. Having paperwork and electronic health records set up for patient self-disclosure may help eliminate the potential for an awkward exchange. Ensuring that patients can list their gender pronouns and the name they go by rather than their legal name may be a source of comfort for patients who are anxious about misgendering. Other patients may choose not to list pronouns and may find it uncomfortable or not genuine if asked.

An option I strongly caution against is having staff directly ask about demographic information related to SO/GI at the time of front-desk registration. Information about any patient’s gender or sexual orientation can be highly private. Openly asking a patient this information may “out” them to people they have not informed or to strangers in the room, causing confusion or unnecessary discomfort. For example, while I was working as a consultant for a large hospital network, it was shared that a parent and child were checking in with the front desk staff. The staff asked the child’s gender identity, at which the child turned to her mom and cried while saying, “They think I am a boy?!”

It is also important for health care professionals and staff not to complete demographic fields in the electronic health record based on assumptions or without a patient’s permission. I recently visited a health care setting for my yearly physical and lab work associated with my ongoing use of testosterone. When looking through the chart, I saw my sexual orientation was listed as heterosexual. I did not complete that field, nor am I heterosexual. Assuming identity based on relationship status can cause clinicians to overlook screening for certain health behaviors and health risks.

Professionals who show sensitivity to transgender patients’ risks and needs can increase patients’ trust. When patients trust you as a health care professional and come out as transgender, express respect for their trust. Showing respect includes discussing what should and should not be placed in health records, particularly correspondence to other clinicians or third-party payers. For all future visits, note paperwork in case patients change or update information.

Gender-affirming care begins when one first enters a facility and sees oneself reflected in imagery, forms, and how one is addressed. 

Lesson 4: Not all transgender patients are alike, self-identify with the same language, and need the same things from health care. Each transgender patient has a different story and different needs—including for general health care—that are unrelated to their transition status. Regarding medically assisted components of a transition, some transgender patients seek numerous interventions, others want only some interventions, and still others seek no medical assistance for their transition.⁹ Transgender identities and needs exist on a spectrum, and attempting to classify, generalize, or routinize them is not always helpful.

When serving transgender patients, be mindful that more than half the total number of publications ever printed on transgender issues have been published since 2010.¹⁰ Another literature review on articles published between January 1997 and March 2017 noted that 32% of the studies were published in 2016 and 80.5% were published after 2011.⁸ All were conducted in major cities, thereby underrepresenting patients outside of urban locations.

Relying on guidance from research conducted largely within the last 5 years in major cities limits historical and contemporary representation, as well as the gender language used. For example, current literature often uses terms such as transgender and nonbinary to identify patients who seek either transition or forms of expression outside male and female genders while noting that the words transsexualism and transexual are outdated and potentially offensive. For people who identify as transexual, this messaging stigmatizes their lived experience. When I share my medical history, I state that I am a transexual man in order to clarify that I’ve crossed my sexed body from female to male. Contemporary gender terms are still being explored and require further ethical consideration.¹¹ Placing transgender people in binary (male and female) or nonbinary (outside of male and female) categories potentially creates further confusion.¹² For example, I have a personal identity of being either transgender or transexual, but I do not identify as being binary. For me, binary is related to a structured system, not an individual’s sense of self. A suggested umbrella term is gender diverse.¹¹

Lesson 5: Advocacy for changing how we diagnose and treat transgender patients will continue to decrease stigma and misperceptions. How health care professionals code a patient’s health care visit might impact that patient’s current and future care and others’ perceptions. In 2022, the International Classification of Diseases version 11 (ICD-11)¹³ replaced the diagnostic categories “transsexualism” and “gender identity disorder of children” with “gender incongruence of adolescence and adulthood” and “gender incongruence of childhood,” which made coding inclusive of the wide range of identities and unique needs of patients exploring or undergoing a form of gender transition.¹⁴ It also moved the gender incongruence diagnostic categories from the chapter on mental health to the chapter on sexual health to further decrease stigmatization of transgender people.¹³ Ending the practice of classifying and coding patients with gender identity disorder in the ICD aligns with the removal of this language from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013.¹⁵ These are welcome changes, but one point of contention remains: for years, transgender patients and advocates have been requesting that coding and classification related to gender identity be removed from the DSM completely and that gender incongruence solely be included in the ICD to shift the focus on gender identity from mental illness to medical needs.¹⁶

Like any area of medicine, standards of care and best practice guidelines are continually being updated. In 2022, the World Professional Association for Transgender Health (WPATH) announced the release of Standards of Care, version 8 (SOC-8),⁹ which expanded guidance for care of transgender adolescents and patients with gender diverse identities. In 2011, I attended the WPATH conference where SOC-7 was introduced.¹⁷ Being someone that transitioned under SOC-6,¹⁸ I welcomed the changes introduced. During my time of transitioning, clinicians could require a patient to undergo a year living as the gender they identified with to complete the “real life experience” before beginning administration of hormone therapy.¹⁸ After a year of consistent administration of hormone therapy, a patient could then seek surgical care. The release of SOC-8 thus further addresses the diverse needs of transgender patients.

Lesson 6: Transgender health literacy requires clinicians’ ongoing education and training. Opportunities to explore gender through social and medical transition options have rapidly expanded as information technology has increased transgender visibility.¹⁹ There has also been an increase in acceptance and awareness of identities that venture beyond our understanding of male and female.¹¹ Yet medical schools and health service organizations recognize that there is little training for clinicians on how to work with patients in relation to sexual orientation and gender identity.²⁰

By following the American Medical Association (AMA) Code of Medical Ethics, clinicians can ensure that patients receive appropriate medical care. The AMA Code recommends that physicians meet patients where they are at, “present the medical facts accurately … to make recommendations for management in accordance with good medical practice,” and “help the patient make choices from among therapeutic alternatives consistent with good medical practice.”²¹ Gender-affirming care begins when one first enters a facility and sees oneself reflected in imagery, forms, and how one is addressed. Clinicians who show knowledge of transgender health and are comfortable in discussing patients’ specific needs will have a positive impact on the mental health of transgender patients,²² specifically in the form of decreased depression, anxiety, and suicidality.⁸

Opportunities to increase transgender health literacy among clinicians include consultation,²³ conferences,²⁴ webinars,²⁵ books, and articles focused on transgender health care. It’s also critical for health care professionals to listen closely to individual patients’ stated needs to further grow their knowledge when serving transgender patients.

Conclusion

These lessons have hopefully offered insight into unique issues that transgender patients confront when seeking health care services. Clinicians who practice cultural humility by listening to patients’ needs and by holding respectful conversations create safer environments that will hopefully deepen patients’ trust and lead to better care.