Building Better Care

You don’t have to be a doctor, a nurse or even someone LGBTQ to shudder at the things some healthcare professionals and their staff say to patients who identify as transgender.

“Hello, sir. Oops, I meant ma’am. Sorry!”

Most people are cisgender, meaning their gender identity matches their bodies from birth, and many will eventually concede they have no idea what it’s like to be transgender or gender non-conforming.

What most cis people rarely consider, however, is that most trans and nonbinary individuals cannot imagine what it must be like to have their perception of their own gender match the body they see in the mirror. This marginalized existence is made even more difficult by the things people say to them, and about them.

“Mommy, is that a boy or a girl?”

Connecticut Voice asked health providers at two of the state’s leading healthcare institutions, and transgender people themselves, to help readers better understand what kinds of experiences trans patients endure when they show up at an emergency room or even their doctor’s office, what health professionals are doing right, and where they need to improve.

“Transgender people have a right to their self-expressed gender identity and to be referred to by their name,” says Britta Shute, APRN, a family medicine nurse practitioner at UConn Health in Canton, who works closely with transgender patients. “But unfortunately, the way that the billing process works, we still have to have whatever [name] is on the insurance card.” The process of changing one’s name is complex and expensive, she adds.

“We’re trying to create an environment here at Hartford Healthcare, where we’re much more open and willing to look at these issues,” says Dr. Laura Saunders, assistant director of psychology and the clinical coordinator psychologist of an LGBTQ specialty track in Young Adult Services at Hartford HealthCare’s Institute of Living. She works to empower LGBTQ youth and does a lot of training on campus.

“We know enough to move beyond the electronic medical record and really deal with the patient’s individual issues,” Saunders says. “And we know by statistics that LGBTQ people of all ages are less likely to reach out for medical support because of fear of stigma. So if the name on the chart says ‘John Smith,’ and I have someone sitting in front of me, I say to myself, ‘I’m not sure that this person goes by ‘John;’ let me ask their name and pronouns.’”

At UConn Health, Shute uses a new kind of intake form, which goes far beyond the typical “male or female” category of self-identification, and includes what she calls an organ inventory.

“I don’t ask ‘sex assigned at birth,’” she says, “but I do ask patients to disclose their gender identity, and then later I use an organ inventory,” a simple, straightforward Q&A that helps her understand patients’ bodies no matter how they present. One is a list of “organs I have presently,” and the other is “organs I was born with.”

Shute champions UConn Health’s efforts to review and improve policies and practices, in hopes of receiving a positive score from Human Rights Campaign on its Healthcare Equality Index (HEI).

For 2018, only Bristol Hospital, Middlesex Hospital, the VA Connecticut Health Care System in West Haven, and Yale-New Haven Hospital sites in New Haven, Greenwich and Bridgeport participated in the HEI, receiving scores ranging from 95 to a top score of 100. UConn, Hartford Hospital and other medical centers across the state didn’t participate. Shute says about one-third of that ranking is earned by educating and training staff how to treat LGBTQ patients.

For example, here’s a routine question that may have nothing to do with a transgender woman’s reason to see a doctor, that’s difficult to answer without coming out: “When was your last period? Any chance you could be pregnant?”

At her first appointment with a new healthcare provider about six months ago, Nikki Houle of Mystic was asked that and other questions.

“First, she asked me, ‘When was your last mammogram?’” Houle, 35, recalls. “I’ve never had one,” she replied. Puzzled, her doctor then asked, “Ok, when was your last pap smear?”

“I replied, ‘I’ve never had one of those,’” Houle says. “At this point, she’s starting to look uneasy. She finally asked, ‘Well, when was your last period?’ I told her, ‘I’ve never had one.’”

“I’m a transgender woman,” Houle finally told her. “Nothing down here has been operated on yet.”

Hartford HealthCare’s Saunders says, “We call that courageous conversation. Step one in any of these situations, and I know this is hard, is to advocate for yourself.”

“Speak up and say, ‘that’s not the name,’ or ‘that’s not the pronoun,’ or ‘that’s not how I identify.’ It has to come from the individual,” Saunders says. “I work with a lot of the individuals that I have here on a little bit of assertiveness. A little bit of advocacy can go a long way, and you’ll see how responsive people are when you assert yourself.”

She adds, “If they don’t feel comfortable coming out, they just have to answer [questions] as simply and directly as possible.”

Saunders provides her colleagues with copies of the April 2017 report in the Journal of The American Academy of Child & Adolescent Psychiatry titled “Ten Things Transgender and Gender Nonconforming Youth Want Their Doctors to Know.” For the report, New Haven trans man and trainer Tony Ferraiolo worked with psychiatrists at Harvard and Yale universities to query 20 teenagers from the Yale pediatric Gender Program.

Among the findings, the teens, who ranged in age from 13 to 18, said doctors need to understand: sexuality and gender are two different things, talking to strangers about these things is uncomfortable, genitals shouldn’t be asked about unless medically necessary, genital and breast exams can be particularly uncomfortable, and staff using the wrong tone or attitude with patients can cause patients to shut down.

“A study done in 2011 polled medical students to see how many hours were dedicated to LGBT curriculum,” says Shute. “And the average was five hours.”

“We know this is a problem,” says Shute.

In 2016, the National Center for Transgender Equality survey of the trans community showed 33 percent of respondents had at least one negative experience with a medical professional related to being transgender, including “having to teach the health care provider about transgender people to receive appropriate care.”

That was the experience of Barbara Curry of New Haven, a trans woman who is not undergoing a medical transition for health and financial reasons. Many trans and gender nonconforming individuals reject medical intervention. Still, Curry decided it was important to disclose her gender identity to her new physician who was in private practice at the time.

“The doctor had virtually no idea what I was talking about when I told him I was transgender,” she says. “He proceeded to ask me all sorts of questions about my sexual history. I simply asked him, ‘Did you skip that day at med school?’ He admitted that he must have, because he didn’t recall any preparation in his education for this particular discussion. At the same time, he made himself open to learning and asked great questions,” says Curry, adding he’s now her medical champion and has since joined Middlesex Health.

Erica Anderson, a clinical psychologist in Oakland, Calif., was not so lucky when she met with an endocrinologist in Philadelphia to get a prescription for hormones to begin her medical transition.

“She did not look me in the eye,” Anderson says. “She told me that she didn’t do that — help trans persons with hormones.” Anderson persisted but the answer remained “no.”

“I was told that there would be no charge for the visit,” says Anderson. “Both the doctor and her staff, I felt they were repulsed by me. I felt shamed and shunned. They did not offer any other referral or resource. I felt horrible, as if I were a leper.”

In time, she worked up the courage to try again, this time with a referral from a psychologist specializing in gender issues.

What should patients do? “Speak out,” says Saunders. Both she and Shute agree: complain.

“Unfortunately, as an institution, sometimes that’s the most formal way that we can identify weaknesses,” Shute says. “We have a formal process that all our complaints and grievances are dealt with and are responded to, and that gives us the ability to improve care.”

Says Saunders, “People are not going to be 100 percent correct all the time. However, we are absolutely dedicated to correcting those situations.”