Executive Summary There is a gap in the literature regarding the key areas that measure the success of navigation programs—patient experience (PE), clinical outcomes (CO), and business performance or return [ Read More ]
February 2017 VOL 8, NO 2
Becoming a Champion for LGBTQ Cancer Patients
Lesbian, gay, bisexual, transgender, and questioning (LGBTQ) individuals face unique health risks and challenges when dealing with cancer, according to Mandi Pratt-Chapman, MA, Director of the George Washington (GW) University Cancer Institute and Associate Director of Patient-Centered Care and Health Equity at the GW Cancer Center in Washington, DC.
The Joint Commission, the Centers for Medicare & Medicaid Services (CMS), and the National Cancer Institute have acknowledged the unique needs of LGBTQ cancer patients, and the Supreme Court ruled in favor of same-sex marriage nationwide last year, but the LGBTQ community still faces significant, and quite often legal, discrimination. “Just because we’ve made strides doesn’t mean we’re there yet,” she said at the Academy of Oncology Nurse & Patient Navigators 7th Annual Navigation & Survivorship Conference, where she explained the challenges faced by this community, as well as implementation strategies for creating a welcoming environment for LGBTQ patients.
What Does This Have to Do with Cancer?
According to Ms Pratt-Chapman, in a national sample, 14% of lesbians and 18% of bisexual women self-reported ever having been diagnosed with cancer, compared with 12% of straight women.
Patients and clients who don’t “come out” to their providers are more likely to lie or leave their provider due to discomfort, but open and honest communication improves service delivery, increases knowledge, and encourages trust. “We have to know who our patients are in order to help them,” she said.
Of LGBTQ patients who have disclosed to their providers, 58% brought the subject up themselves, including as a way to correct a mistaken (heterosexual) assumption made by the provider or healthcare worker. Forty-five percent of transgender, or “trans,” patients have not told their family physician that they are trans; 24% of LGBTQ adults said they had deliberately withheld information about their sexual practices from their doctor or other healthcare professional; and although 70% of lesbians disclosed their sexual orientation to their provider, only 29% were asked by their provider.
Gender identity and sexual orientation are very different concepts. “We put them under the same umbrella, because this is a group of people who are very diverse and experience similar social stigma and a similar history of discrimination,” she explained. “But that doesn’t mean they’re the same.”
Sex is assigned at birth; sexual orientation refers to romantic/erotic response; and gender is a social construct, or how a person wants to appear to the world. Gender identity is the persistent internal sense of being a man, a woman, or some other gender. Our gender identity may or may not match our appearance, our body, or others’ perceptions of us, so never assume a person’s pronouns, she cautioned, citing her own preferred pronouns as “she” and “her.”
We all have a gender identity, and for cisgender people, this gender identity matches the sex assigned at birth. However, transgender people have a gender identity that does not match the sex assigned at birth, and there are approximately 1.4 million transgender people currently living in the United States. Transition is the process of changing one’s gender presentation to match one’s internal sense of gender, but not all transgender individuals wish to transition, and they may or may not wish to change their pronouns. “We typically think about things in biological terms, but to be truly patient-centered, we need to be thinking about the perspective of the patient, and their gender identity is how they conceptualize themselves,” she said.
The Levels of Oppression
The National Institutes of Health defines health disparities as the "differences in the incidence, prevalence, mortality, and burden of disease and other adverse health conditions that exist among specific population groups in the United States.” According to Ms Pratt-Chapman, LGBTQ people report lower well-being in 5 areas: financial security, physical health, social life, sense of purpose, and community attachment.
LGBTQ people smoke cigarettes at rates that are 63% higher than the rest of the population; some studies report alcohol abuse rates among LGBTQ individuals at levels 3 times higher than in the mainstream population. And oppression can run the gamut, from microaggression (ie, “that’s so gay,” or “you run like a girl” to explicit, institutional aggression (ie, legally being denied a job for being transgender).
“A big reason for these unhealthy behaviors is fear,” she stated. According to a 2010 study, 56% of LGBTQ individuals experience discrimination, and 70% of transgender individuals face serious discrimination. A 2015 study on providers found that 29% of those who give cervical cancer screenings felt comfortable with providing care to a transgender person, and 11% said they wouldn’t do it. Furthermore, a medical school bias survey from 2015 found that 80% of first-year medical students expressed implicit bias against lesbian/gay people, and nearly 50% expressed explicit bias. “This is last year,” she emphasized.
Additionally, LGBTQ people are at elevated risk for depression, anxiety, and suicide, and almost half of transgender people have attempted suicide. “The barriers faced by LGBTQ people can often be our own attitudes, behaviors, experiences, and beliefs,” she said. “We see things a certain way and we think we’re right, but there’s always another perspective.”
The Difference Matters
There is a big difference between equality and equity. “Treating all people the same isn’t treating them how they need or want to be treated,” Ms Pratt-Chapman explained. “Equity is about providing people with what they need to be successful or healthy.”
Lesbian and bisexual women have higher risk and incidence rates of breast cancer, a higher age-adjusted risk for fatal cancer, lower mammography rates, and lower pap tests. There are no prospective studies on transgender men and women, but based on case studies and a few large cohorts, hormones do not appear to increase the risk of breast cancer. However, prospective longitudinal studies are needed. The vast majority of transgender men retain their cervix, and that population has about a 37% lower uptake of cervical cancer screening due to a variety of factors, she reported.
She said behavioral factors such as alcohol and tobacco use, obesity in lesbian women, mental health stresses, and social stress lead to some of these disparities, but providers can address these issues by simply screening for what the patient has. Think about anatomy, she said, as trans women typically still have a prostate, and trans men typically have a cervix. Trans women with prostates still need to discuss the pros and cons of prostate screening, and transvaginal ultrasound can be used to examine the prostate.
“Even if someone has had bilateral mastectomy, it likely wasn’t performed in the way a cancer patient would have it, so it’s still worth doing a mammogram based on what the patient can tolerate and what tissue is there,” she explained. Additionally, providers shouldn’t assume that mastectomy is a negative thing, as some may find it gender-affirming and wanted to have their breasts removed. “Check those assumptions,” she stressed.
Creating a Welcoming Environment
Ms Pratt-Chapman encourages providers to ask patients about their sexual orientation and gender identity and pronouns, and to ask permission before storing this information in the electronic health record. Ask these questions in an open and nonjudgmental manner, be patient in allowing the person to respond, and explain that all staff routinely ask these questions of all patients. She stressed the importance of simply being compassionate with LGBTQ patients. “Look up from your computer screen, explain the reason you’re asking these questions, and just be interested in your patient,” she said. “It’s OK to make mistakes. It’s part of being willing to try, and people will forgive.”
The average life span of a trans woman of color in the United States is 35 years due to hate crimes, homicide, and suicide, so take confidentiality very seriously, she urged, as it could quite literally mean the difference between life and death. “Trans discrimination and rejection happens even in the LGBTQ community, so if you’re fortunate to have a trans patient in your care, take care of them.”
Ask about “current relationship status” and “current living situation” rather than “marital status.” Be respectful, professional, and supportive, and don’t ask questions to satisfy your own curiosity, she said. Finally, use the same terminology the patient uses.
If they call themselves by a certain name, call them by that name, and avoid microaggressions like gossiping, trivializing concerns about differential treatment, and name-calling, even between peers.
In addition to making patients feel welcome, organizations should also show their inclusivity. Consider displaying a nondiscrimination policy, a rainbow, or a gender-neutral bathroom sign (www.bathroom.support offers free posters). The Human Rights Campaign also has a Healthcare Equality Index offering a survey by which institutions can gauge how gender- and LGBTQ-affirming their practice is.
CMS requires hospitals receiving federal money to respect same-sex partners in terms of visitation policies, and The Joint Commission requires conspicuous nondiscrimination policies in hospitals and has put out a field guide for the LGBT community on advancing effective communication, cultural competence, and patient- and family-centered care. “These are things your institution should be taking seriously,” she reiterated.
Jacquetta Brooks, MSW, LGSW, Manager of the Mautner Project at Whitman-Walker Health, which oversees education, prevention, and patient navigation programs focused on cancer and LGBTQ health disparities, said the issues affecting this population prevent them from receiving the healthcare they need—often the healthcare that can help them detect cancer early and make it successfully through treatment.
She encourages testing and prevention interventions to increase awareness around sexually transmitted infections related to cancer, such as human papillomavirus, and medical interventions like pre-exposure prophylaxis and postexposure prophylaxis that help prevent HIV infection. These interventions help prevent people from living with compromised immune systems that can put them at greater risk for cancer later on.
This population has low rates of health insurance, even with the Affordable Care Act, she said. “When you’re part of a population that’s been marginalized, and you may have had previous negative experiences dealing with healthcare, those have long-lasting effects that will stop you from engaging with the healthcare system in the future.”
Lack of knowledge also adds to poor health outcomes in the LGBTQ community. According to Ms Brooks, individuals in this population aren’t always clear on how their lifestyle factors put them at risk for cancer. For example, lesbian women have a low uptake for pap screenings due to the mistaken belief that these screenings are only necessary for women who engage in heterosexual sex.
She said LGBTQ people are also often economically disadvantaged, particularly in urban areas, so it’s important to address these practical issues when providing care. “In this community it’s a priority issue,” she said. “If they don’t know where they’re going to sleep, they probably don’t know if they’re going to make it to their appointment.”
Great advances have been made in HIV care, but a unique situation has arisen as a result. Patients might be old in the realm of HIV but still relatively young for cancer. She said these patients are often not prepared for a cancer diagnosis, and learning to manage 2 chronic illnesses at the same time can be a huge undertaking. Providers need to work with these patients to explain how cancer treatment interacts with HIV treatment. They likely need help navigating drug interactions, transportation issues, the cost of additional appointments and copays, and potential treatment and appointment fatigue.
Ms Pratt-Chapman and Ms Brooks urge providers to be aware of the unique challenges and barriers to cancer care faced by LGBTQ people, and to take steps to become culturally competent in providing support to these underserved populations. Not all individuals have access to the most basic resources, and they may have difficulty prioritizing their cancer care as a result.