When the Oncology Team Fails the Transgender Patient

Stephanie Jackson, DNP, MSN, RN, AOCNS, BMTCN

A patient with a new diagnosis of lymphoma was admitted to a quater- nary care hospital for treatment. Upon admission, he informed the oncology nurse he wanted to be referred to as “Jesse.” This was the beginning of ongoing barriers. The patient, aged 58 years and Hispanic, had experienced years of abuse and had decided to transition to male. On admission and throughout his inpatient stay, the patient was continually referred to as “her” by the oncology staff. This was a constant reminder of his historical pain and showed a lack of regard for his preferences. He indicated that he was experiencing excruciating pain from the disease not responding to chemotherapy and believed the multidisciplinary team did not have the competency to manage his disease, seek alternative treatments, or manage his holistic needs. When the chemotherapy ceased to work, he expressed to the social worker that he was suffering and didn’t want to continue treatment. His pain was never adequately controlled, and even upon transitioning to hospice, the unmanaged physiological and emotional pain delayed comfort until days prior to his death.

Approximately 1.4 million people identify as transgender in the United States.¹ Although there is currently minimal research on this population, it is known that they face an increased risk for cancer diagnoses. Cancers of the reproductive system are seen among those who undergo gender-affirming treatment that requires high-dose estrogen or testosterone. Liver and anal cancer are also commonly seen due to the increased prevalence of HIV, hepatitis, and human papillomavirus infections in this patient population.

According to the Institute of Medicine (now the National Academy of Medicine), transgender patients may experience delayed diagnoses due to the lack of competency and training among health care providers. Such patients also have felt discriminated against, which can result in unemployment and a lack of health insurance.1 These barriers can lead to their avoiding seeking health care because of the stigmas they experience. As a result, transgender patients who have a diagnosis of cancer and receive treatment often have
a poor prognosis.²

Investigators conducted a qualitative study with 273 people who identified as lesbian, gay, bisexual, transgender, or queer (LGBTQ) to evaluate their recommendations for improving cancer care. The participants completed an online survey, which the investigators evaluated using coding to identify common themes. The 5 identified themes are:

1. The LGBTQ population feel their care is affected by health care providers’ knowledge, mistreatment, and assumptions.
2. They disclose their identify based on their comfort with providers.
3. Their health care experiences vary based on their experience with identity.
4. Their care is improved when they have an adequate support system.
5. They are advocates for their care despite enduring marginalization.³

Disparities in cancer care among the LGBTQ population are globally ignored; therefore, little has been implemented to improve patients’ outcomes. To optimize care, standardized evidence-based interventions and best practices are needed across the continuum of care, from primary prevention to survivorship. Additionally, ongoing competencies are necessary to provide foundational knowledge of this population, including cultural sensitivity.²

Further, health care workers must have an intentional commitment to reduce the barriers that exist among vulnerable populations.

References

1. Institute of Medicine. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. National Academies Press (US); 2011.

2. Schabath MB, Blackburn CA, Sutter ME, et al. National survey of oncologists at National Cancer Institute–designated comprehensive cancer centers: attitudes, knowledge, and practice behaviors about LGBTQ patients with cancer. J Clin Oncol. 2019;37(7):547-558. doi:10.1200/JCO.18.00551

3. Kamen, C.S., Alpert, A., Margolies, L. et al. “Treat us with dignity”: a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer. Support Care Cancer 27, 2525–2532 (2019). https://doi.org/10.1007/s00520-018-4535-0