Pioneering care for transgender people

Three years ago, Barbara,* a transgender woman in California, made an appointment to talk with a Kaiser Permanente surgeon about having genital gender-affirmation surgery to confirm her identity as a woman. Gender dysphoria, also known as gender incongruence,** was not Barbara’s only challenge: She struggled with a serious mental health diagnosis as well as significant medical problems. She had poor circulation in her limbs, limited mobility and extreme water retention, which increased her risk of serious complications following any surgery. She also had little financial or social support.

"The surgeon contacted us and expressed concern that she was not a surgical candidate, medically or psychiatrically," recalls Susanne Watson, PhD, a psychologist and the clinical director of the Multi-Specialty Transitions (MST) Department at Kaiser Permanente Oakland Medical Center.

In response, Watson and her multidisciplinary team of gender specialists reached out to Barbara’s medical providers, including the surgeon, to develop a treatment plan to help her maximize her physical and mental health in preparation for the surgery, which was deemed medically necessary to alleviate her gender dysphoria.

Working alongside surgeons and other medical professionals, psychologists like Watson are helping transgender patients navigate the many decision points in their treatment—and helping surgeons and other providers better understand the psychological dimensions of gender dysphoria.

Barbara is one of a growing number of Americans who identify as transgender. According to a 2016 study by the Williams Instituteopens in new window at the University of California, Los Angeles, School of Law, about 0.6 percent of American adults, or 1.4 million people, identify as transgender. California has the nation’s largest transgender population, estimated at 218,400—one reason the state is at the forefront of this type of care. But it is far from the only place making such care available to transgender people. In recent years, numerous large employers—among them IBM, Johnson & Johnson, Bank of America, Apple and many more—have negotiated contracts with their insurance carriers to allow for medically necessary treatment for gender dysphoria, according to the World Professional Association for Transgender Healthopens in new window (WPATH), an international authority on standards of care for transgender people.

Obstacles to care

The Diagnostic and Statistical Manual of Mental Disorders defines gender dysphoria as emotional distress over "a marked incongruence between one’s experienced/expressed gender and assigned gender." Some people whose gender identity does not align with the sex they were assigned at birth do not experience distress or dysphoria. If they are comfortable with their bodies and are able to express their gender authentically without social rejection or discrimination, they may do well emotionally.

For instance, many gender-expansive children who receive family and social support for expressing their gender authentically do not suffer from gender dysphoria. But when people experience dysphoria associated with sex characteristics that do not align with their gender identities, medical or surgical interventions are often necessary to alleviate distress. For some people, the dysphoria associated with their bodies is so distressing that they avoid looking in a mirror or removing their clothes. They may also avoid sexual intimacy, which can lead to further loneliness and isolation. For these people, hormonal and surgical interventions can be lifesaving.

While not all insurance providers cover transition-related care, access to this care is considered medically necessary for many transgender people to address their gender dysphoria, according to WPATH. Still, says Watson, transgender people continue to face many obstacles in their efforts to address their dysphoria. "Historically, a lot of transgender people have been unable to get care because of financial barriers and a lack of coverage for transgender care," she says.

While that has begun to change, transgender patients continue to encounter providers who discriminate against them by refusing them treatment or treating them in ways that feel humiliating, such as referring to them with the wrong pronouns, or by their legal name rather than the name they are using. (This experience of being misgendered is one that many transgender people face daily and can trigger distress and despair. When this happens in a medical setting, it undermines trust and the patient’s safety.)

Some providers, Watson adds, never even know that their patients are struggling with gender dysphoria because their patients fear that disclosing the information will lead to negative judgments or discrimination.

A new, integrated approach

To address some of the obstacles that transgender people face when seeking care, Kaiser Permanente launched the first integrated model of transgender care in the United States in 2013 through its MST Department in Oakland, where Watson works, and through its sister organization, the Gender Pathways Clinic at Kaiser Permanente San Francisco Medical Center. Kaiser now provides transgender care throughout its system, which includes more than 12.2 million members in eight states and the District of Columbia.

The model offers Kaiser patients access to a team that includes clinicians from surgery, internal medicine, adolescent medicine, gynecology, endocrinology, psychology, psychiatry, nursing and social services. Since deciding whether to use hormonal and surgical treatment for gender dysphoria requires both medical and psychological expertise, this approach allows psychological and medical teams to share insights to arrive at the best collective recommendations for patient care, says Ali Salim, MD, chief of plastic and aesthetic surgery for Kaiser Permanente San Francisco Medical Center.

"It would be impossible to deliver surgical care without an ongoing and significant contribution from our colleagues in the psychiatry and psychology world," Salim says.

When patients begin considering medical or surgical treatment at Kaiser, they typically consult a gender therapist—a psychologist, clinical social worker, or marriage and family therapist who has training and experience in transgender mental health care. This consultation can range from a single session to a more extended therapeutic process, depending on the extent to which the person has explored and considered the ramifications of treatment.

Some people are very knowledgeable about surgical options and how transitioning could affect their lives, while others need more time to think about various options, as well as about how to negotiate challenges that may be associated with the surgery, such as potential impact on significant relationships, necessity of time off work, financial impact, and a plan for both emotional and physical support during the postoperative period.

If a patient decides to move forward with surgery, Watson says, the next step is visiting a surgeon to determine whether the patient is a good candidate. If the answer is yes, a nurse coaches the patient on how to prepare for surgery, while a social worker helps the patient plan for such needs as taking time off from work, applying for medical disability and accessing support services.

"A lot of what we’re doing here is ensuring informed consent"—making sure the patient has enough information and is sufficiently clear about the decision to proceed, says Watson.

From a psychological perspective, Watson adds, that means helping patients understand the treatment and establishing a realistic idea of what it may do for them. For example, if a patient thinks that having facial feminization surgery will mean they’ll no longer be perceived as transgender or be discriminated against, Watson helps the patient develop more realistic expectations. She also helps patients explore questions such as what it might be like to have a face that looks different from the one they were born with or to lose a part of their body that caused them dysphoria but had been part of them for their entire lives.

In addition, Kaiser’s mental health team helps transgender patients explore the potential impact of surgery on their intimate and family relationships. Sometimes patients may face a devastating choice between taking action to alleviate gender dysphoria and risking the loss of relationships.

In addition to working with surgeons, the mental health team coaches other providers to work sensitively and knowledgeably with these patients. For example, all transgender clients need ongoing access to pharmacists for their medication regimen, while transgender men also need to seek gynecological care.

Better endings

What happened to Barbara, the California woman who sought transgender surgery? Thanks to the team’s assistance, she began physical therapy and eventually became strong enough to walk on her own much of the time and not need her wheelchair. She worked with her gender therapist and learned skills to manage her psychiatric symptoms. And once those aspects of her life were healthier, the team agreed she was ready for surgery.

The entire process took a few years, says Watson, but it went well, thanks to good preparation and thoughtful, team-based care. Barbara’s before and after photos are striking, adds Watson—above all, for how much happier she looks now.

*Name changed to protect patient privacy.

**The International Classification of Diseases-11 is proposing to use the term "gender incongruence" instead of "gender dysphoria" and moving the diagnosis from the chapter on mental disorders into a chapter on sexual disorders. The term "gender incongruence" is thought to be less stigmatizing.