Lying in a psychosis ward bed, Amelia Perry couldn’t shake thoughts of suicide. The noise blaring from other patients in the hallway and the bright lights above felt like too much. Perry, a 25-year-old trans person, was in the hospital seeking help.
Days earlier, Perry (who asked at admission to be identified by gender-neutral pronouns ze and hir) had been discharged from another nearby hospital following a week-long stay after attempting suicide. That’s how Perry ended up in the noisy psychosis ward at McLean Hospital, a Boston-area psychiatric hospital.
A clinician allegedly said Perry couldn’t be in a room with two beds in the Proctor House ward, which treats patients for dissociative disorders and trauma, and that there were no single-bed rooms available. Perry, who had asked to be placed in a women’s shared room, was instead placed in a single-bed room at a different McLean unit — North Belknap, which treats patients with OCD and psychotic disorders.
It sounded like gender discrimination, Perry said at the time. According to nursing notes obtained by ThinkProgress, hospital staff placed Perry in the psych unit due to clinical acuity — pulling out hair and head-banging.
But “the psychosis ward is harmful and triggering to me,” Perry told ThinkProgress in an interview at the time. “I am not psychotic.”
“Maybe when society is more progressive,” the clinician allegedly said, would Perry get the right bed in the right ward.
When asked about Perry’s case, McLean Hospital spokesperson Adriana Bobinchock said that since 2011, the hospital has developed policies and training to “reinforce a culture of acceptance and tolerance.” Among the hospital’s current policies, Bobinchock said, is a patient’s “right to be placed in a room with a roommate without regard to the patient’s gender identity, [but that] certain patients, regardless of gender identity or any other protected class factor, may be better cared for in a single room.” Bobinchock added that if a patient feels a policy had been violated, they should contact the hospital’s own “patient civil rights office,” and the hospital could investigate.
Perry did file a civil rights complaint with McLean Hospital’s civil rights office and went on a hunger strike, demanding a bed at Proctor House. Still on hunger strike, Perry was discharged and moved to another emergency room in Cambridge, Mass., and offered a placement in a facility north of Boston. Perry’s psychiatrist warned that not taking that available bed could make it harder to get into any in-patient placement from this emergency room visit. But friends had told Perry this hospital was a bad place for transgender patients, and Perry went home instead.
Finally, after about 91 hours without food, Perry got a bed at Proctor House.
ThinkProgress interviewed Perry on several occasions during and after the hunger strike. Ze made progress, but couldn’t get past the thoughts of suicide. Over the next couple months, Perry wrote on Facebook about going in and out of the hospital without finding the right mix of medications and assistance.
“I attempted suicide again in late December and spent new year’s in an abusive inpatient unit,” Perry wrote on Facebook on January 22. “I don’t have any motivation to continue; a small part of me feels obliged to stick around to try a couple more treatment options (TCAs, ketamine, maybe ECT). We’ll see…”
Amelia Perry died on January 30.
Perry’s experience with mental health care was disturbing, but not an anomaly: the estimated 1.4 million-plus Americans who identify as transgender and/or gender non-conforming struggle with mental health at much higher rates than their cisgender peers. Trans Lifeline and the National LGBTQ Task Force surveyed 8,574 people in 2017, almost all of whom self-identify as transgender and are U.S. citizens. Eighty-eight percent said they have considered ending their own life. Over half have attempted suicide at one point. Those suicide attempt rates are far above the national averages for people of all genders (about 0.5 percent of adults).
But with overtaxed psychiatric care facilities that frequently lack the training and expertise to competently treat transgender patients, the American health-care system frequently fails those who need psychiatric hospitalization.
ThinkProgress spoke with an array of former patients, advocates, providers, and experts about the unique factors that make an already traumatic time and an already dysfunctional system even more acutely difficult for trans and gender-nonconforming people — a segment of the population with some of the highest rates of suicide attempts — and about the baby steps that are underway to address the crisis.
“There’s no bed for my son.”
For many Americans who are suicidal — be they young, old, gay, straight, transgender, cisgender — the first problem is a lack of access to treatment.
State budget cuts have left a huge hole in the safety net. In its landmark 2012 report No Room at the Inn: Trends and Consequences of Closing Public Psychiatric Hospitals, the Treatment Advocacy Center documented a national crisis. “The number of state psychiatric beds decreased by 14% from 2005 to 2010,” it noted, dropping to 43,318. Per capita, this put the nation at pre-Civil War levels of access to psychiatric beds. By 2016, that number had dropped even further, to just 37,679. A 2017 report by a different organization found that between 1970 and 2014, the number of available psychiatric beds declined more than 77 percent when adjusted for population growth. A 2016 PBS NewsHour report noted that by one estimate, the country needs an additional 123,300 psychiatric beds to meet demand.
And for those who are suicidal, temporary hospitalization is important. “The research is pretty clear that in-patient hospitalization is a necessary and ultimately beneficial medical process,” says John Snook, the Center’s executive director.
The first step in any treatment process is finding an available bed for the patient. Not all states have computerized databases with this information, so sometimes this can mean calls to as many as 20 facilities to find one with space. Often these calls are made by the emergency department at a hospital, by a medical provider, or by local law enforcement officer. In some states, the patient might be taken to an intermediate location such as a mental health-specific ER. If a patient has a history of violence, has exhibited other uncontrollable behavior, or even smells malodorous, Snook noted, they might be refused by those facilities.
In many cases, Medicaid does not pay for residential psychiatric treatment, adding to the barriers for patients without insurance. If bed availability is low, patients may be told they have to take the one facility that is offered — or go without. And if no bed is available, patients simply wait for as long as it takes. In some cases, they may even simply opt to leave and go home.
As the number of beds has dropped, the suicide rate in the U.S. has risen over the past several years. In recent months, the shortage of beds has attracted national attention and become a political crisis in some states. Though he thinks we’ve reached the “bottom of the barrel” and people are starting to take the problem seriously, Snook laments. “We still hear from families every week that say, ‘I’m told there’s no bed for my son, what do we do here?’”
If you’re transgender, it gets harder to get psychiatric care
While the system is problematic for everyone, it can be immeasurably worse if you are a transgender or gender-nonconforming patient needing care for suicidal ideation. And when the someone contemplating suicide seeks emergency care, the response they encounter at every step can have a huge effect on their survival.
“Take that situation, combine with a discriminated-against minority situation that already I think people are struggling how to provide effective care for and may have outright discriminatory views… [you’re] setting up for the worst sort of processes,” Snook said.
When a transgender person arrives at an emergency room or other intake place, an especially fraught process begins.
Sarah Bender, associate director of gender equity for NYC Health + Hospitals (the public hospitals system in New York City), said that often people are addressed in a way that makes them feel unwelcome from the beginning. “The most common thing we hear about from trans and nonbinary folks in health and human services settings is being misgendered or called the wrong name. While it’s something that might seem minor to someone who is cisgender or who doesn’t have to think about it on a daily basis, it can really affect whether the person even makes it into the exam room to get care.”
Bender notes that the facilities in her system have written guidelines — modeled on recommendations from LGBTQ advocacy organizations — including using intake forms that specifically ask the patients’ pronouns and whether their name differs from the one on their legal documents.
But many hospitals don’t follow such best practices: The Human Rights Campaign Foundation publishes a Healthcare Equality Index, tracking which hospitals — of all kinds — have LGBTQ-friendly policies. The 2017 survey found that just 39 percent of hospitals participating had any specific policies on how to competently treat transgender patients and just 69 percent of those policies included getting a patient’s preferred name and pronouns at admission.
A patient who needs emergency help for suicidal ideation will probably not check the equality index score for a facility before admission. And even if they do have a sense of whether a psychiatric care center is a welcoming place, they may not have any choice in where they are placed — especially in cases where there may be few beds available. This can lead to a take-it-or-leave-it scenario.
Available psychiatric beds might be in a hospital affiliated with a religion that rejects trans identities. Some psychiatric inpatient facilities in the Centers for Medicare & Medicaid Services database, for example, are Catholic hospitals that must follow a set of ethical and religious directives set by the U.S. Conference of Catholic Bishops. Indeed one in six medical patients in the United States receive care at a Catholic hospital. The conference last year posted an open letter rejecting the legitimacy of transgender identities and urging parents not to accept their trans kids. The pope has denounced trans-affirming approaches as “ideological colonization.”
Next, the patient’s treatment facility has to decide where to put a transgender patient in its facility. While the best practice is generally to ask whether the patient prefers a single-bed room or placement with someone of the same gender identity, this does not always happen, said Eric Yarbrough, president of the Association of LGBTQ Psychiatrists and director of psychiatry at Callen-Lorde Community Health Center in New York City.
Some facilities will only place a trans patient in a separate space, says Iden Campbell McCollum, who works with members of the transgender community in Washington, DC on mental health issues. That can mean an even longer wait, like the one Amelia Perry experienced.
Kwame Taylor, a trans person of color who uses “they” pronouns and lives in New York City, told ThinkProgress about an personal experience at a psychiatric facility last year that included nearly all of these types of discrimination and mistreatment.
After a traumatic experience last year, Taylor was taken to a psychiatric facility. From the moment they arrived, everything that could go wrong for a trans patient seemed to go wrong. Taylor recalls waiting in a room surrounded by other patients who were making threatening comments about “faggots.” The staff “had to redo my paperwork and made me wait longer. They kept getting my name and gender wrong because they kept getting confused.”
Rather than moving to a room in the psychiatric ward, Taylor remembers waiting in what felt like a guarded prison holding cell for three and a half days. After finally being brought upstairs to a double room with no roommate, a nurse mentioned that the typical wait time was much shorter and that two patients had left in the past two days. “That’s when I realized/remembered that there is some sort of policy, I don’t think it’s law, their practice is they separate trans or even sometimes queer people [and] put them alone. If you’re trans, you’re in their eyes, you’re neither/both… I had to wait until two consecutive beds in the same room opened up.”
Taylor said they did not receive medical attention for an open wound, was assaulted by rough staff, and was denied access to prescription anti-seizure medications and nicotine patches. “I was on my period, [but they] refused to give me pads. I had to free bleed into the same pair of underwear for four days.”
Taylor asked one of the staffers to return something that had been confiscated. “I asked if I could have my binder. [The staffer] said, ‘We’ll have to wait a few days. Do you have important papers?’ She thought I was talking about a file organizer. I was talking about a chest-compression binder. She didn’t know. I said ‘I thought they gave you training!’”
Determined to get out of the psychiatric inpatient facility as quickly as possible, Taylor researched the law via cellphone, reached out to get help from Sasha Alexander at the Sylvia Rivera Law Project, and was eventually released after two more depressing and harrowing days as an inpatient.
“I went out. It was noon. I’d never been so thankful to see all the traffic, to smoke a cigarette. I thought to myself, ‘wow, I don’t feel suicidal at all anymore.’ Not because I went and got help—but because I so never want to be in one of those places ever again that I never want to risk that,” Taylor concluded. “All thoughts of suicide had left me… I’m fine because I’m not in that terrible place. I’d rather stay alive on this god-awful earth then ever go back there again.”
Five hours of LGBTQ training — or less
By all accounts, Taylor’s story is not unusual. Medical care for transgender patients is at best so inconsistent (and more often consistently poor), in part due to the lack of training for medical professionals. Finding trained mental health providers is a struggle for most transgender people throughout the country: not just in rural areas, but in historically progressive cities too, where LGBTQ communities comparatively thrive and enjoy broader legal protections.
“The medical system doesn’t really think about the existence of trans people in general” said Jack Drescher, a clinical professor of psychiatry at Columbia University. “Forms say male and female. Clinicians may have very little experience working with trans patients.”
Often, uneducated psychologists will pin unrelated mental health issues on people’s gender identity, according to Victoria Rodriguez-Roldan, the director of the Trans/Gender Non-Conforming Justice Project at the National LGBTQ Task Force. Rodriguez-Roldan, who is transgender herself, said a few years ago, a therapist in Arlington tried blaming her gender identity and dysphoria on her bipolar disorder, even though those two diagnoses are completely unrelated. She’s heard similar stories from many other trans people.
“When you are in a roomful of health-care providers you don’t want to be the smartest person in the room,” Rodriguez-Roldan said, “but that is often the reality for a lot of trans people.”
lore m. dickey, an assistant professor and doctoral training director at Northern Arizona University’s department of educational psychology and a transgender man, said he needs to explain his gender identity and “genital situation” to doctors at the start of the appointment.
“That puts so much stress on trans people. You have no idea how the provider is going to react, you have no idea if you’re gonna be safe,” said dickey. “If you’re in the hospital… you’re already in a very difficult emotional place and you don’t even necessarily know how to ask for what you need, or the fact that you have the right to do that,” he said.
Over the course of their four-year programs, medical schools on average discuss LGBTQ-related issues — ranging from AIDS prevention to sexual orientation basics to hormone therapy — for only five hours, according to a 2011 Stanford University School of Medicine – funded study. According to numerous advocates, doctors, and psychologists, even today the time devoted to it is often less; dickey and Yarbrough both said it’s often just one hour or even less.
“There are some people spending zero time working with trans people, talking about LGBTQ people in a health-care setting,” dickey said. “If we have people who’ve never been exposed to that in their training, the likelihood that they’re going to be willing to work with people in a way that’s ever remotely affirming and appropriate, the answer is going to be slim and none.”
The lack of training shows.
“Because of the culture in medicine where trans folks don’t feel welcome or experience roadblocks to [care], they often don’t seek the mental health treatment they need,” said Hansel Arroyo, the director of psychiatry and behavioral medicine at the Center for Transgender Medicine and Surgery at Mount Sinai Hospital in New York.
According to the survey of transgender people by Trans Lifeline and the National LGBTQ Task Force, the vast majority (89 percent) of the those people surveyed have seen a therapist at some point. However, nearly 33 percent of the respondents said their therapist misgendered them or refused to use their correct name or pronoun, 16 percent said they were verbally harassed or disrespected, and about 12 percent said they were denied equal treatment or service. As a result, more than half reported avoiding mental health institutions for inpatient and outpatient services.
Until recently, psychologists and psychiatrists required trans people to live in their desired gender for a year so they could get “real life experience,” while seeing their therapist during that time, before they are able to receive any medical services like hormone replacement therapy or genital reassignment surgery, Arroyo said. And a lot of trans-competent therapists, especially in large cities like New York, charge hundreds of dollars per session.
Today, the American Psychiatric Association (APA) has guidance for psychiatrists when caring for transgender and gender nonconforming people, and the World Professional Association for Transgender Health (WPATH) has standards of care for health professionals. However, the APA’s guidance is not official policy and only briefly addresses inpatient care and WPATH’s guidelines don’t focus on treating trans patients specifically seeking mental-health care at hospitals. The only guideline that addressed those issues in depth, which ThinkProgress was able to identify, is the Transgender-Affirming Hospital Policies published by the Human Rights Campaign Foundation, Lambda Legal, Hogan Lovells, and the New York City Bar.
Dan Karasic is a clinical professor of psychiatry at the University of California, San Francisco, and a WPATH board member. He said that WPATH offers trainings and certification for providers who want to learn how to competently care for trans patients — a service that has been provided to more than 2,000 people. But, he explained, that the training often misses the people who need it the most.
“My guess is that some of the people who most could benefit are choosing not to get that training because they don’t feel it’s as important as other things,” said Karasic. Trans competency “needs to be incorporated into psychiatric medical training, med school training, and training in other disciplines so there is some basic knowledge everyone has.”
In Iowa, where people often travel two hours to find trans-friendly care, many doctors and medical providers across the state in both rural areas and in population centers take advantage of LGBTQ-compentency training from One Iowa, according to the organization’s executive director Daniel Hoffman-Zinnel.
“There is a lack of general awareness of the transgender community across the entire state,” said Hoffman-Zinnel, “but especially in rural areas where they have never met a transgender person or know that they have met a transgender person, so the lack of knowledge contributes to the lack of inclusive care.”
“Most people in Iowa, once you provide them with information and let them understand the needs, they truly want to do the right thing,” Hoffman-Zinnel said. “There is always the one person who doesn’t believe the things we would like them to believe and that’s okay. We work around that.”
Bender said the New York public hospital system emphasizes training all staff with whom a transgender patient might interact with before seeing a doctor.
Last year, Mount Sinai’s Center for Transgender Medicine and Surgery became the first in the country to create a fellowship program with a curriculum focused on training doctors and psychiatrists how to properly treat and care for transgender patients, according to Arroyo.
A spokesperson for the Association of American Medical Colleges, a non-profit association that includes all 151 accredited U.S. medical schools, told ThinkProgress in an email that curriculum covering LGBTQ issues in its member schools has increased significantly over the past few years. According to its own voluntary survey of its members schools, 66 percent of the schools who participated in the survey reported including some transgender health content in its curricula for the 2016 academic year.
Even with new LGBTQ training opportunities for young doctors coming out of med school, there is still no training or education requirement for doctors that have been in the field for a while. In 2016, Washington D.C. became the first state to pass an ordinance requiring medical providers to complete LGBTQ cultural competency training: requiring at least two credits of LGBTQ-related training in order to receive required continuing education, according to the Advocate.
Yarbrough said he has been working with the American Psychiatric Association on trying to formalize education on LGBTQ psychiatric health.
“I think training is definitely one answer. People are mandated to get training on all sorts of things, like HIPAA for instance,” Yarbrough said. “Why can’t you spend a certain amount of training on vulnerable populations?”
When the providers get it right, the effect can be literally lifesaving.
Luna Inanis Umbra, a trans woman from Massachusetts, told ThinkProgress about the time she walked toward the ocean at a beach in Rockport, Massachusetts one evening in January, 2015. Umbra had just swallowed between five and seven pills of the powerful opioid Dilaudid. Her intent was to walk into the ocean and disappear from the world.
Umbra, now 29, says she’s had suicidal thoughts since she was 12 and suffered from chronic pain since she was young, but over a span of about 10 months, that pain had worsened in her feet, knees, and pelvis.
Two weeks prior to that January evening, she was told by a geneticist that she had Ehlers-Danlos Syndrome, which affects her connective tissue, and that the hormones and testosterone blockers that she took were causing her pain to worsen. The news was upsetting.
As Umbra stood at the edge of the ocean in a “fucked-up state,” instead of continuing forward into the cold sea, she said something prompted her to throw up, crawl back up to her car, and fall asleep. Over the next week, she floated between different friend’s apartments out of fear that she would try killing herself again if she were alone.
Eventually she ended up at at her longtime friend’s home, who called an ambulance to get her some help. At the Lahey Hospital & Medical Center in Burlington, Mass., that friend hounded staff to recognize Umbra’s name, pronouns, and gender.
Her three-day stay at the hospital was not perfect. She said she had some arguments and confrontations with staff who wanted to take her blood for tests against her wishes. But she felt affirmed there, and afterwards at a longer-term LGBTQ mental health program in Boston called The Triangle Program, which helped her overcome her suicidal thoughts.
“The [Lahey] staff was fine… It was a pivotal moment because my friend pushed so heavily to get my gender recognized. The girls in the room with me assumed I was female because of my paperwork,” said Umbra. “It felt kind of remarkable… It felt like the universe was okay because this sucks and it is horrible. But you may actually be able to blend in and be seen as a girl, which really helped me cope with it.”