Caring for Transgender Patients: An Evolving Story of Learning and Respect

Share
Chasity Burrows Walters

Chasity Burrows Walters

Chasity Burrows Walters is in a continuous state of reinvention. She has had “a million weird jobs” — designed her own clothing line, owned a store, tended bonsai trees — and followed her passions wherever they’ve led. She understands the need of every person to find their true identity — and to wear it proudly. It’s part of the reason she has become an outspoken advocate for LGBTQ (lesbian, gay, bisexual, transgender, and queer) patients and has made it her mission to help shape how Memorial Sloan Kettering cares for transgender patients.

Creating Herself from Scratch

She was a rebel from the start. The first in her family to graduate from high school, Dr. Burrows Walters, who grew up in Rhode Island, went on to earn her master’s in nursing from Boston College. She joined MSK as a travel nurse in 2005, transitioned into a manager role in Patient Safety, and was then appointed Director of Patient Education in 2011. In 2013, she earned her doctorate in nursing from New York University, graduating as the valedictorian of her program. Recently, she was promoted to a senior director role in the Department of Marketing and Communication, where she continues to lead patient education.

Before becoming a nurse, she worked at a variety of jobs that had at least a tenuous connection to healthcare: She did everything from caring for residents in a group home to teaching sex education to running parenting workshops for teen moms. In her spare time, she was an emergency medical technician in the small, rural community where she grew up.

Her passion for her work is very personal. While she was working on her dissertation — the topic being “patients’ perspectives on their role in patient safety while hospitalized” — her mother who was hospitalized in Rhode Island during cancer treatment, fell and fractured her leg. The hospital kept her in traction, and she developed a bedsore, which is caused by constant pressure on a particular area of the body. Her leg had to be amputated as a result. She died of cancer soon after.

“I always think about people like my mom,” she says. “I worry about that divide in information and technology access and what we’re doing to bridge it.”

The thread for me when considering the needs of different patient populations has long been vulnerability — whether language, gender, sexual orientation, or health literacy — and what I can do as an advocate.
Chasity Burrows Walters

Concern for Vulnerable Patients

“The thread for me when considering the needs of different patient populations has long been vulnerability — whether language, gender, sexual orientation, or health literacy — and what I can do as an advocate,” says Dr. Burrows Walters.

With that in mind, and eager to improve care for LGBTQ patients, she connected with Luis Tollinche, anesthesiologist and Chair of the Anesthesia Quality Assurance Committee, and together they co-founded the LGBTQ Clinical Advisory Committee in 2017. Now 26 members strong, the group advises MSK staff on the clinical care of LGBTQ patients and provides strategic direction for advancing that care.

To better understand the knowledge, attitudes, and communication behaviors of clinicians in respect to LGBTQ patients, Dr. Burrows Walters sought out Smita Banerjee, a behavioral scientist, to partner on a survey — the first of its kind at MSK. Their research was published in the Journal of Health Communication and led to funding to train nurses in inclusive and sensitive communication skills.

In an extension of her interest in health literacy and how language can engage patients or alienate them, Dr. Burrows Walters also worked with Sigrid Carlsson, an epidemiologist, on a study of a commonly used female sexual health questionnaire. They conducted interviews with sexual- and gender-minority people to explore perceptions of the questionnaire.

“Not surprisingly, many of the questions didn’t address issues this population cared about,” says Dr. Burrows Walters. Through rounds of interviews, the team modified and tested changes in language, broadening the definition of sex and moving away from wording that was perceived as both heteronormative — a worldview that promotes heterosexuality as the normal sexual orientation — and male-oriented.

The information derived from these various studies, which have been significant additions to the small canon of literature on LGBTQ cancer patients, has been eagerly embraced by staff.

“MSK staff are amazing — they want to learn, especially given the general absence of data, but they’re also nervous about saying the wrong thing and offending someone,” she says.

Dr. Burrows Walters has worked hard to educate staff, conducting trainings and grand rounds with Kelly Haviland, who is manager of Advanced Practice Providers and Co-Chair of the LGBTQ Clinical Advisory Committee. The presentations are usually on issues that affect the LGBTQ community broadly, but sometimes they focus on transgender patients, a cohort that many staff are unfamiliar with.

“We finish our presentations and there’s usually a line of people with questions they were too embarrassed to ask in front of everyone,” she says.

MSK staff are amazing — they want to learn, especially given the general absence of data, but they're also nervous about saying the wrong thing and offending someone.
Chasity Burrows Walters

Caring for the Person, Not Just the Patient

Broadly speaking, a transgender person is someone whose gender identity is different from the sex they were assigned at birth. As cancer patients, transgender people often face a unique set of challenges, from staff uncertainty about how to address them and which pronouns to use to cancer tests and treatments that may conflict with their gender identity. At MSK, there is a coordinated effort to address the concerns of transgender patients and ensure that they feel understood and respected.

Inspired by MSK’s ethics consultation service, Dr. Haviland created a consultation service for transgender patients that any patient or staff member can utilize by emailing [email protected]. When requested, Dr. Haviland and David Jay Smith, a Patient Representative, will respond, engaging with patients, staff, and family members around issues they may be experiencing.

Requests for consultation are often the result of a patient being misgendered, meaning they were addressed by staff using the wrong gender or pronouns. This typically happens if the sex listed in their medical records is different from their gender identity. It’s not only distressing for the patient but can also impact their clinical care because certain tests and treatments, such as chemotherapy dosing, are determined according to sex.

“We need both values in our clinical systems, gender and sex assigned at birth, to provide the best care, both in terms of respecting who a person is but also in terms of making sound clinical decisions,” says Dr. Burrows Walters.

The Toll of Treatment

But the needs go beyond data gathering. Caring for transgender patients requires staff to consider the potentially devastating impact on a patient when their appearance changes because of cancer treatment.

Transgender patients are often required to stop gender-affirming hormone therapy once they start cancer treatment, which can significantly alter how they look. For example, a transgender woman who stops hormone therapy may develop facial hair, masculinizing her appearance.

“This can be heartbreaking for these patients,” says Dr. Burrows Walters. “They’re told that, to save their lives, they have to give up the identity that they’ve fought so bravely to embrace.”

And is it even necessary? As Dr. Burrows Walters points out, in the absence of sufficient data, it’s impossible to know for certain if gender-affirming hormone therapy really must be stopped when certain cancer treatments begin.

Sometimes, the burdens of treatment may not be immediately obvious to staff.

“If a nonbinary person [someone whose gender falls outside of the binary structure of woman and man] typically wears a binder to minimize their breasts and they can’t do that because they’re recovering from surgery, how does that affect them emotionally?” asks Dr. Burrows Walters. “How does it feel to be a transgender woman who has to go to Kimmel for treatment for prostate cancer? What is the impact on a transgender man who has to get a pap smear?”

“The Clinical Advisory Committee is thinking about all these questions, talking to patients and providers, and trying to understand how we can help transgender patients cope with these issues,” she says.

The Privilege of Caring for Our Patients

The launch of the sexual orientation and gender identity program at MSK, and the promise of solid data that can be used to improve the care of transgender patients, is a milestone for the LGBTQ Clinical Advisory Committee, which was integral in this development.

“Everyone at MSK is committed to ensuring that all our patients have the best possible experience with us,” says Dr. Burrows Walters. “We want transgender patients to know that we see them for who they are and are honored to provide them with the compassionate, respectful care they deserve.”