Feb. 19, 2019 -- Jami Contreras and her wife were 6 days into parenthood when they went to their first pediatrician’s visit with their new brand-new baby. The couple had met with and chosen the doctor before the birth of their first child, but this was their first time out of the house as new parents.
“We ventured to that first pediatrician appointment scared to death like all new parents. You need that reassurance from a pediatrician that you are doing the right thing. You need that moment,” Contreras says.
But they never got it. When the couple was ushered into a clinic room, another doctor walked in -- one they’d never met or seen before.
“‘I will be your doctor,’ she said, and started the appointment,” Contreras recalls, saying that she and her wife were confused at first and then stunned when told why their original doctor wouldn’t be seeing them.
“She told us our doctor had prayed on it and decided she wouldn’t be taking us on as a client. I think she could see the pure confusion on our faces. Then she said, ‘It doesn’t matter to me. I have other patients that are gay,’ ” Contreras recalls. “I felt sick, and I remember looking at my daughter at one point and thinking, ‘What did we do?’ ”
Contreras says she thinks the second doctor was trying her best in that moment, but she says that pediatrician wasn’t prepared for an appointment with lesbian gay, bisexual, transgender, and questioning or queer (LGBTQ) parents. She says the provider kept asking about the “dad” rather than the sperm donor and questioned the culture and heritage of the donor they had chosen as well.
“There were so many moments in that meeting that were horrible. But we didn’t leave because we didn’t know where to go. We had a doctor in front of us who was at least seeing us, and we were there for our daughter,” Contreras says. “But we were in complete shock and complete disbelief. Nothing of that level had ever happened to us, and we didn’t see it coming.”
Weeks later, Contreras says, the original doctor sent the couple a letter explaining her decision and said she didn’t feel she could develop the kind of personal, patient-doctor relationships with them that she had with other families. Then Contreras says the office refused to correct a billing error, and she and her wife decided they needed to share their story. They posted it on social media, and the account quickly went viral.
“I think this is an epidemic. I think it’s a huge problem and our story is just one of thousands happening every single day across the country,” Contreras says. “We have heard other people’s stories. We have had doctors reach out to us from all over the country trying to change the culture because they know colleagues doing this.
“If you live the life of anyone in the LGBTQ community for 1 day, you know this can happen anywhere. Every day, lives are being affected by this.”
New Research on LGBTQ-Friendly Health Care
There is increasing research and awareness in the medical world about the need for more inclusive and LGBTQ-friendly health care. This is seen as especially important because research shows LGBTQ people face several health disparities, meaning they have higher rates of several conditions including mental health disorders, substance abuse problems, suicide, and more.
A January 2019 study outlines the challenges in cancer care. It found the vast majority of 450 oncologists surveyed at the nation’s top 45 cancer centers say they’re comfortable treating LGBTQ patients, but most aren’t sure they fully understand the needs of this group of patients. Those numbers were especially stark with transgender patients, people whose gender identity does not match their biology at birth. The study found 83% of oncologists would be comfortable treating transgender patients, but only 37% felt they know enough to do so.
“There was this overall limited knowledge about LGBTQ health and cancer needs,” explains lead author Matthew B. Schabath, PhD, an associate professor in cancer epidemiology at the Moffitt Cancer Center in Tampa, FL. “And if it isn’t happening in these places, it isn’t happening anywhere. That is where the leading edge of research is being conducted and where guidelines are coming from.��
Researchers found an eagerness to learn -- 70% of oncologists wanted health education about the unique health needs of LGBTQ people, and many do seem to need it, based on survey responses that show a lack of understanding about issues affecting these patients.
The study shows oncologists didn’t realize LGBTQ patients are more likely to spend time in the sun, smoke tobacco, and have substance abuse problems. Many didn’t realize women are still at risk for the human papillomavirus (HPV) –- which raises the chances of having many other cancers -- if they haven’t had sex with a man. Cancer doctors also didn’t fully understand the family and personal dynamics, social stressors, and lack of support networks that might be at play for LGBTQ patients.
This study is one of many new bodies of research looking to better understand LGBTQ patients and their needs and concerns. Others include:
- A November 2018 study that looked at fears that older LGBTQ patients have when they are dying in long-term care facilities. It found they worry about discrimination and their personal safety.
- A new clinicians guide that was published in December 2018 that outlines best practices for transgender care, recognizing that this role often falls to primary care providers
- A January 2019 study that shows that while a number of government agencies have stressed the importance of getting information on the sexual orientation and gender identity of patients in electronic health records, most health care organizations don’t have a system to do that
- And a study released this month that shows people who received hormone treatment as part of gender transitioning had a greater risk of stroke and heart attacks
Ryan K. Sallans is an LGBTQ rights advocate and trans man who travels the country educating doctors about how to deliver inclusive health care. He wrote a first-person narrative titled “Lessons from a Transgender Patient for Health Care Professionals,” published in 2016 in the AMA Journal of Ethics. Sallans says it’s heartening to see these issues getting some attention.
“In general, providers are not trained on how to work with LGBTQ patients,” he says.
Understanding the Scope of the Problem
Medical ethics codes do set guidelines in this area.
The American Medical Association (AMA) Code of Ethics says doctors must respect basic civil liberties and are ethically required to provide care in emergencies. The policy also opposes any refusal to care for prospective patients based on race, gender, sexual orientation, gender identity, or other personal or social traits that are not clinically relevant to the person’s care. But the code does say doctors “should have considerable latitude to practice in accord with well-considered, deeply held beliefs that are central to their self-identities,” and it says doctors can decline to provide a specific intervention or service if it is “contrary to the physician’s deeply held personal beliefs.”
The American College of Physicians Ethics Manual also says a doctor must not discriminate against a class of patients the doctor can otherwise give the right care for. “This would include sexual orientation or gender identity,” says Lois Snyder Sulmasy, JD, director of the Center for Ethics and Professionalism for the American College of Physicians, who helped write the most recent edition of the manual published in January.
“But the physician is not obligated to provide a particular service to which she or he objects based on fundamental personal values,” she says, adding that if the issue cannot be resolved after they talk about their concerns and expectations, the doctor and patient should discuss the patient's option to seek care from another doctor.
When it comes to discrimination in general, research from the Center for American Progress in 2017 found that 1 in 4 LGBTQ people reported feeling it in 2016. Nearly 70% said that at least somewhat negatively affected their psychological well-being, and almost 45% reported it negatively affected their physical well-being.
Despite their physical and mental health needs, data show that LGBTQ people are less likely than their heterosexual peers to seek out medical care. LGBTQ people of color are more than twice as likely to avoid doctor’s offices than those who are white, and lesbians are less likely to have regular doctors or get preventive cancer screenings.
Many say that’s because a lot of LGBTQ patients have negative experiences:
- More than half of LGBTQ respondents in a 2010 survey said they’d felt discrimination in a health care setting.
- A 2010 survey of more than 6,450 transgender and gender-nonconforming people found nearly 1 in 5 (19%) reported being refused care outright because they were transgender or gender-nonconforming.
- In that same study, 50% also reported significant lack of provider knowledge about transgender care.
- And studies show that heterosexual health care providers and 80% of medical students surveyed report having bias against lesbians and gay men.
Many believe this is due, in great part, to a lack of medical training on LGBTQ issues. In a 2011 survey, deans of medical education at 132 schools in Canada and the U.S. reported 5 hours was the median time dedicated to teaching LGBT-related content in their curriculum.
“Medical curriculums really fail doctors in this area when they go through school, which in turn fails the patient,” Sallans says.
Discussion About Disclosure
Disclosing sexual orientation and gender identity is another part of the health care process that’s getting more attention. For a long time in health care, it was thought doctors shouldn’t ask patients these questions -- because of privacy issues and debates about whether it was relevant for care or counter to treating everyone equally.
But federal health organizations now say it’s crucial to providing high-quality health care. Even so, this remains a challenging point for many LGBTQ patients and doctors.
Schabath’s cancer study, for example, found high agreement about the importance of knowing a patient’s gender identity (66%), but low agreement around knowing sexual orientation (40%).
“There should be 100% for both factors,” Schabath says. “Patients have historically struggled to disclose, because this is a group that has been discriminated against and experienced bigotry. But as doctors, you should know who you are treating. This is a health disparity group, and you are not treating a patient blindfolded. It’s about treating mind, body, and soul and understanding all the needs someone has to successfully fight a diagnosis as grim as cancer.”
Kinton Rossman, PhD, a psychologist practicing in Louisville, KY, published the first study looking at sexual orientation and gender identity disclosure among LGBTQ people between the ages of 18 and 24. In the sample Rossman created while doing an internship at Northwestern University outside Chicago, just 37% of LGBTQ young adults were sharing this information.
“It can be such a central pivot point in terms of how someone’s health care goes. If I go into a health care setting, someone’s reaction is going to make a big difference in my health care experience after I disclose,” Rossman says.
The data used for Rossman’s study didn’t explain whether patients told the provider their orientation or wrote it on forms, but Rossman says it was abundantly clear that LGBTQ patients are nervous about this process and more work needs to be focused on improving this crucial first step in the patient experience.
“Even getting called back in the doctor’s office -- they may call you by the wrong name or use Ms. or Mr. incorrectly, and it already flags you. That callback can be hard. Getting charts right or getting charts and insurance to match can be hard,” Rossman says. “Creating an affirming disclosure experience for patients can mean so much. But if you say something flip, it can create a negative reaction for patients and make them not want to be part of health care.”
Finding Inclusive Health Care
While there is a growth in research on this subject, Sallans says searching for inclusive care remains a challenge for many -- especially in conservative states and rural areas like Nebraska, which is where Sallans lives.
“I see this all the time in Nebraska. We have people who live 6 hours away from larger towns, and they say, ‘Where do I go?’ ” Sallans explains. “If you are in western Nebraska, people will go to Denver because they don’t have the providers they need close to them.”
Joey Brown, a gay man living in Kentucky, says it’s challenging in his town of 25,000, where he moved to be close to his parents.
“It hasn’t been easy finding a doctor in my hometown who is friendly toward or even a member of the LGBT community. There are no ‘Pride Pages’ here to use as a reference, and online searches haven’t turned up anything,” Brown says. “There are doctors here who I know to stay away from because of their personal beliefs, and I ended up going to a primary care doctor that a gay friend recommended because he said he thinks this doctor is ‘OK with it.’ But my sexual orientation is not something the doctor and I have ever talked about.”
Schabath says he understands this is the reality for many, but he encourages patients not to give up on looking for inclusive providers, even when it’s difficult. “If you aren’t comfortable with your doctor, you aren’t likely to go back, and there can be lots of downstream effects. You need to have that open, frank relationship with your physician, so continue to search for that if you don’t have it,” he says.
In the meantime, Schabath says many in the medical community are looking for solutions. In January, he published a study outlining web-based, LGBTQ-focused training that he and his team developed for oncologists.
Rossman says there are many developments to be hopeful about, but admits the pace of change can also feel frustratingly slow. “I think the tide is turning. Things are changing. Do I feel it on the ground in the place I live? No,” Rossman says. “Certainly the providers I know that are affirming and supportive are fantastic. But being able to find that at any clinic or drugstore can be challenging.”
As for Contreras and her wife, 4 years later, they say they now have a wonderfully inclusive pediatrician, and their first visit with their son -- who is now 20 months old -- was a very positive experience.
But they do things differently these days. Contreras says they research new health care providers a lot -- even their dentist. They get referrals from friends, look for those who advertise in a local LGBTQ magazine, and always call first and ask the receptionist if the office has LGBTQ patients and is comfortable treating them.
“Before we step in your office, we are going to call you and see where you stand, and if you are hesitant, we won’t come in,” Contreras says.
The couple still share their story often -- and several years later are part of a national campaign about the importance of inclusion in health care. Contreras says she is proud that her family’s story has resonated with so many, but she also wishes change was coming faster.
“When our daughter was 6 days old, I remember thinking, ‘I hope when she is 6 years old, things will be better.’ Well, she is already 4, and it’s not,” Contreras says. “So we keep sharing our story because we keep hoping that hearts and minds will change.”
The Human Rights Campaign has resources for disclosing to your doctor,
and the group’s Healthcare Equality Index evaluates health care facilities' policies and practices related to the equity and inclusion of their LGBTQ patients, visitors, and employees in communities across the country.