Skip to content
Health
Link copied to clipboard

Navigating the health care system as an LGBT patient

Everyone diagnosed with breast cancer faces unique concerns. That’s why open communication and trust between patient and their care team is so important. Unfortunately, such open communication isn’t always the case for members of the lesbian, gay, bisexual and transgender (LGBT) communities. A 2010 national study by Lamba Legal found almost 56 percent of LGBT respondents had experienced discrimination in a healthcare setting with numbers even higher for trans people. We’ve heard similar stories at Living Beyond Breast Cancer.

Everyone diagnosed with breast cancer faces unique concerns. That's why open communication and trust between patient and their care team is so important.

Unfortunately, such open communication isn't always the case for members of the lesbian, gay, bisexual and transgender (LGBT) communities. A 2010 national study by Lamba Legal found almost 56 percent of LGB respondents had experienced discrimination in a healthcare setting with numbers even higher for trans people. We've heard similar stories at Living Beyond Breast Cancer.

Sherry, 59, told us she came out to her healthcare providers after her metastatic breast cancer diagnosis because she wanted her partner to accompany her during treatment and other hospital visits. "She was my sole support," Sherry said. Yet some oncology nurses couldn't hide their discomfort around the lesbian couple: entering the room, doing what they had to do and leaving as fast as possible. It baffled Sherry, who was a nurse. "You could tell they were so uncomfortable with us."

Statistics and stories like these can add even greater unease to an already challenging situation.  For some LGBT people, coming out is an important step toward working well with a care team. Others may feel nervous coming out, or feel it is not needed. Many factors may play into this personal decision.

Coming out to a care team may yield benefits. A 2012 study by the National LGBT Cancer Network reported that those who came out and did not feel discriminated against felt both respected and safe during treatment. Research done by LBBC indicates that coming out can:

  1. Help care teams address sexual and relationship concerns related to diagnosis and treatment,

  2. Ease stress for people who feel they're hiding their true selves, and

  3. Give providers needed information to better guide treatment decisions and help patients stay as healthy as possible through treatment and beyond.

Sometimes a care provider might inadvertently speak in a way that makes an LGBT patient worry about sharing their sexual orientation. In response to such situations, some hospitals are trying to be more welcoming for LGBT people by creating friendlier policies, offering LGBT health education programs and enlisting LGBT liaisons (staff members who serve as advocates for LGBT patients or people working for the hospital).

Susan, 63, was relieved she shared her sexual orientation with  her oncologist, especially after an infection forced her then-partner to rush her to the emergency room and the ER staff refused to allow Susan's partner to see her. When Susan woke up, however, her partner was not only by her side, but also had been provided with a sleeping cot.

"I later found out that the ER care team spoke with my oncologist and that he told them she was my partner," Susan says. "He insisted that she be brought back in my room because she was my family." She says her oncologist and his team treated her and her partner with the utmost respect. "They welcomed her to my appointments and invited her in," Susan says.

It's not always clear whether a provider or hospital is LGBT-friendly. Here are some tips to help find out:

  1. Ask for recommendations from a primary care doctor

  2. Question friends or other trusted people

  3. Consult the nearest LGBT community or health center

  4. Join an online support group, such as those offered by the National LGBT Cancer Network

  5. Go to an in-person support group to meet peers who can tell you about their personal experience

  6. Research hospitals in the Human Rights Campaign's Healthcare Equality Index, and providers or practices on the Gay and Lesbian Medical Association website or National LGBT Cancer Network's directory, "OUT and Surviving"

There are many reasons a person may choose not to come out to their care team. They may view it as an additional stressor on top of a cancer diagnosis, they may feel it is unnecessary, or that they can communicate well without their doctor knowing such intimate details. Individuals may not be ready to come out, want to focus on their immediate needs, feel their hospital isn't LGBT friendly or lacks LGBT specific resources or training.

In cases where a provider can't or won't offer the care or respect a patient deserves, he or she should seek a second opinion. Ronise, 43, did that after she and her wife sat in an exam room while her surgeon and his nurse spoke about surgical options without once consulting either Ronise or her wife.

"It was very off-putting and upsetting that my wife and I weren't included in the discussion," Ronise remembers. "I decided then I was looking for a new surgeon." Networking with a close colleague, Ronise discovered a surgeon and oncologist who were within walking distance of her workplace.

Regardless of an LGBT person's decision on whether to come out to their providers, remember that medical values require compassion in all medical actions. Part of a healthcare provider's training is to provide the best medical care they can - for all of their patients.

Jean Sachs is the CEO of Living Beyond Breast Cancer. LBBC's Getting the Care You Need as a Lesbian, Gay or Bisexual Person is a free in-print and online resource that explains aspects of coming out to care providers and ways to access additional resources for those affected by breast cancer in the LGBT community.

Read more Diagnosis: Cancer here »