.Bedside Manners

GT1544 coverWEBNavigating the health care system can be a nightmare for transgender individuals. But some local providers are working to change that

When his biologically female child started wearing boy’s clothing, UCSC computer science professor Scott Brandt and his family thought nothing of it. When adolescence hit, though, things got more complicated.

“At around age 12, he started to become suicidal, very depressed,” Brandt says. “By age 13, he tried to commit suicide.”

cov1Things got so bad that Brandt started monitoring his child’s computer chats, so when he wrote to his friend ‘I’m going to die tonight, I’ve already taken half the pills,’ Brandt ran to his room and confronted him.

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“He just exploded. He was so angry at us—so angry at the world,” says Brandt. “He just wanted to die.”

They took him to one residential care facility after the next. “One of the therapists said ‘You’re a girl, suck it up.’ Another place said ‘We just can’t, we don’t know anything about this,’” remembers Brandt. “He was home for three months, crashed again, and was in the hospital four times in three weeks.”

It’s not that the health care professionals they dealt with were ill-intentioned, says Brandt—it was most often a lack of knowledge. When he took his son to the hospital and nurses misgendered him, it made him physically uncomfortable, says Brandt.

“I could just see him shrink every time, because in some sense it’s not something that you can prove, right? If someone asked me to prove my physical sex, I could do it. But if you asked someone to prove their gender identity, you have to go on their word,” says Brandt. “Everybody at 13 struggles with who they are, but with transgender kids they’re struggling with what they are.”

Brandt’s son is now 16, and things are better, says Brandt. His son is open about his identity and is happier, more at peace with himself.

“I can either have a dead daughter or a living son,” says Brandt. “I chose a living son.”

‘WOULD THIS PERSON FEEL SAFE COMING TO YOUR OFFICES?’

Petite in frame but big in personality, Dr. Jennifer Hastings is the director of the transgender health care program at Planned Parenthood Mar Monte; and UCSF assistant clinical professor at the fore of national transgender health care awareness. In front of an almost-full conference room of health-care workers on Soquel Avenue, she tells the story of a patient who came to her office years ago:

“He opened his shirt and I really almost lost it in my knees. It was one of the largest masses I’ve ever seen protruding from the skin, already ulcerating at the edges. He’d known about this for over 10 years, and hadn’t felt safe to seek health care,” she remembers. “He said, ‘I want to die a man.’”

Hastings describes how this patient avoided medical care because someone laughed at him when he went to a Planned Parenthood for a Pap smear. He was born female, but identified as male, and it took him a decade to have the tumor on his chest examined. By then, the cancer had metastasized to his spine and his brain.

“Would this person feel safe coming to your offices?” Hastings asks the audience.

She’s speaking to a group that represents all components of medical health: nurses, front office staff, medical assistants, educators, doctors, physicians assistants, and nurse practitioners. Hosted by Sutter Health, the Palo Alto Medical Foundation Beyond Transgender training session is part of a movement within local health care spearheaded by Hastings and Sharon Papo, executive director of the Santa Cruz Diversity Center.

“Transgender health care issues are a national concern. Especially in an emergency when they’d have less of an ability to advocate for themselves,” says Papo. “This is a life and death issue.”

In 2014, the American Foundation for Suicide Prevention and the Williams Institute published a report on suicide attempts among transgender and gender-non-conforming adults. The National Transgender Discrimination Survey found that among respondents who were refused treatment by a doctor or health-care provider, 60 percent had attempted suicide.

Out of the survey’s respondents, 41 percent had attempted suicide, compared to 4.6 percent of the overall U.S. population and 10-20 percent of lesbian, gay and bisexual adults.

cov2Why such a disproportionately high number of suicide attempts for transgender and gender-non-conforming people?

Because identity is inescapable, says Hastings.

“Gender is kind of profound—it’s the first thing that someone asks when someone is having a baby: ‘is it a boy or a girl?’” says Hastings. “Gender identity is how I feel inside. You have no idea what gender I feel inside; ‘transgender’ is an umbrella term for people whose gender identity or gender expression is different from the sex assigned at birth.”

Most of us already feel vulnerable when discussing a health issue with a complete stranger, says Papo, so it’s even more difficult to trust the expertise of trained professionals (with your life, in some cases) when they can’t move past what they see in the waiting room.

The National Transgender Discrimination Survey Report on Health and Health Care reported in 2010 that 28 percent of transgender and gender non-conforming survey participants postponed medical care when sick or injured due to discrimination.

That’s why Papo and Hastings started training local providers in 2014. They’ve had three sessions at Dominican Hospital with more than 200 medical providers, and are in conversation with the Watsonville Community Hospital to begin trainings in 2016.

“Not only do I want providers to get trained,” says Papo, “but I want the transgender community to know that the providers got trained, so people stop delaying care when they need it.”

Maltreatment due to ignorance can have devastating ramifications, she says, and there are far too many examples of misplaced curiosity leading to blatant invasions of privacy.

“When you have a hurt leg, no one should ask you about your genitals,” says Papo.

‘IT TRIGGERS THIS SENSE IN PEOPLE THAT YOU’RE DECEIVING THEM’

Studies have found that transgender people suffer the most violence, discrimination and harassment when compared to any other group. In 2011, the National Transgender Discrimination Survey reported that of the transgender identity and gender-non-conformity children in kindergarten through high school, 78 percent reported harassment, 35 percent physical assault and 12 percent sexual violence.

That’s the tip of the iceberg: discrimination and violence by law enforcement, in the workplace, within the family, in housing accommodation
s, and in public services, reflect similarly high numbers, especially for transgender people of color.

“What’s unique for trans bodies is that it triggers this sense in people that you’re deceiving them and that provokes an often-violent reaction in a way that doesn’t in sexuality,” says Lex Beatty, 32, who has been public within the Santa Cruz community about his transition to male.

In 2008, Beatty was with a group of friends in San Francisco when they went to a club thinking it was Gay Night. It wasn’t, and when they left the club a group of men started to harass Beatty and his friends, grabbing one “femme” friend.

One of the men broke a bottle of Patrón tequila over Beatty’s head, landing him in the hospital with a broken bone behind his eye. He suffered from migraines for five years after the incident.

Beatty has experienced the good—with respectful, open hospital staff—and the bad: receptionists stumbling over pronouns, sending him to the women’s restroom, and “talking about how to handle me as a patient.”

‘I’VE BEEN THROUGH SO MUCH THAT IT DOESN’T HURT ME ANYMORE’cov3

As a nurse for Planned Parenthood, Alejandra Santiago has seen both sides of the story. Born male in Oaxaca, Mexico, she left for the States at 17 and found that transgender people often have to work just to prove their identity to health-care providers.

“I know what it is to be transgender, I’m living it,” Santiago said as a panel speaker at the Sutter training session, speaking on the steps necessary to begin the medical part of transitioning. “I thought ‘Why do I have to go to a therapist? If the rest of the world doesn’t understand it, they should go to a therapist.’”

It used to be so much worse, says Hastings.

Therapists were essentially the gatekeepers for signing off on hormones and surgical procedures, says Hastings. Except the World Professional Association for Transgender Health guidelines were incredibly restrictive, dangerous even, and few therapists even had enough experience with gender dysphoria (the clinical term for being transgender), so patients would often tell them what they thought they wanted to hear in order to obtain “the letter” for hormones.

Nowadays, therapy is recommended in order to receive hormones, but not required—unlike for the approval of surgeries.

But considering that transgender health is still not common curriculum at medical school, many physicians don’t feel comfortable assessing the patients at all.

Things aren’t perfect but small efforts can make a big difference, said Santiago at the panel. Even starting out with a smile can put someone at ease, and it’s easier to avoid “Mr.” or “Ms.” altogether until the patient’s preference has been established.

“At my age, I don’t care if someone calls me a mister or says ‘You’re a guy,’ because I’ve been through so much that it doesn’t hurt me anymore,” she says. “Medical care can be taught, but I think of the kids that are coming up and it’s hard for them—the harassment hurts, it stays there.”

‘IF THIS CONFUSES YOU, WELCOME TO MY WORLD’

For people like Phoenix Madrone, 27, who spoke at the Sutter training session, it’s even more difficult to answer the “what” or the “who.”

“I don’t see myself as entirely a man or a woman, but something in between, in a category that none of the languages I speak actually has a word for,” Madrone said at the panel.

Madrone identifies as genderqueer, or non-binary, so Madrone’s prefered gender pronoun is “they” instead of “she” or “he” (“If this confuses you, welcome to my world,” they said at the healthcare panel.)  

There have been plenty of times when Madrone has had to explain this to a doctor or medical professional.

“I had to educate my endocrinologist—the one who prescribes my hormones—on what it means to be non-binary. I also had a surgical procedure that was gender-related where I had to explain things a few times to that doctor,” they says.

Madrone had to defend their decision to not have their ovaries taken out when going in for a routine hysterectomy. Another doctor refused to believe that there was a connection between Madrone’s headaches and taking testosterone.   

“With doctors, they know their fields pretty well so they assume their patient is self-diagnosed on WebMD and doesn’t know what they’re talking about,” says Madrone.

Things aren’t any easier outside hospital walls. Madrone is currently one year into the legal transition to have their name changed, which requires a court order. They’ve been to the DMV twice and to court four times; then there’s ensuring that credit cards, social security and passport all match. Each has its individual process and requires information from another source to alter the labeled name, so when a person’s driver’s license says one thing and their credit card says another, things can get tricky.

The bottom line is that there needs to be a third option, says Madrone, for all administrative realms. Health care is critical because it’s at the center of a person’s transition—whether they chose to do so surgically or hormonally, or not at all—but that same lack of knowledge extends to all facets of life for gender-non-conforming people, says Madrone.

“Previously, I was scared for my safety going into a gendered bathroom when I wasn’t sure how people would read me,” says Madrone. “I wish that gendered bathrooms weren’t a thing, because every time I go to use one, I stop and mentally check myself, get myself ready for confrontation, which is … exhausting, frankly.”

‘NO, THIS IS A MAN WITH A CERVIX AND A UTERUS AND HE NEEDS A PAP SMEAR’

For cisgender people (a term used to describe someone who is not transgender, or who identifies with the gender they were born into) something like intake forms can seem commonplace. But for a gender-nonconforming person, there are most often only two boxes to check: male or female.

Stephen Gray, the chief administrative officer for Sutter Maternity & Surgery Center of Santa Cruz, says this is exactly why Sutter is working to include options for “preferred name” and “trans-man,” “trans-woman” for their electronic records so that a person’s correct information goes with them to every department.

In addition to the records, Sutter plans to provide more training sessions in the future and create an ongoing curriculum which would combine smaller sessions for individual nursing departments with larger group trainings: “This topic is too important to too many people in our community to just address it once and assume that’s sufficient,” says Gray.

In California, the Gender Nondiscrimination Act makes it illegal to discriminate against someone based on their sexual orientation or their gender identity, but many providers are not aware of state law or do not comply, says Hastings.

“A Pap smear for a transgender man is often denied because they say ‘oh, well, this is a man, he doesn’t need a Pap smear—you have to
say, ‘no, this is a man with a cervix and a uterus and he needs a Pap smear,’” she says.

And it’s not always easy to keep up with all the changes, she admits—even the LGBTQ acronym is today up to LGBTQQIAA for Lesbian Gay Bisexual Transgender Queer/Questioning Intersex Ally and Asexual. It’s a veritable alphabet soup, yes, says Hastings, but it doesn’t need to be overwhelming for health-care workers or anyone else.

Some examples of how to improve services are simple things like posting rainbow stickers, having LGBTQ literature available in the waiting room, asking for preferred pronouns, and to not be paralyzed by fear of making a mistake—more often than not, the person can recognize the effort, says Hastings.

Things are moving in the right direction, Hastings says—as in 2010 when President Obama struck down the requirement that a person had to have surgery in order to have the gender marker on their driver’s license changed.

Just like sexuality, gender exists on a spectrum, Hastings points out. Some transgender people might start taking hormones but not have any surgeries, some might have one surgery but not the other. It all depends on the individual—and moving forward to inclusivity depends on people realizing that.

“Work to see that the person in front of you is the expert on themselves,” Hastings says. “Respect that.”

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