National guidelines for the best practices in palliative and end-of-life care for lesbian, gay, bisexual, and transgender cancer patients and their families.

Abstract

126 Background: A growing body of evidence indicates that LGBT communities are disproportionately affected by cancer due to higher rates of traditional risk factors such as tobacco and alcohol, non-inclusion in educational campaigns, and minority stress. Due to the exclusion of sexual orientation and gender identity measures in national oncology databases, there has been difficulty documenting the extent of healthcare disparities that exist for LGBT cancer patients. However, an increasing number of studies describe the experiences of LGBT patients and their families at the end of life. Although societal attitudes and legal protections are shifting, the existing literature clearly indicates that LGBT patients in palliative and end-of-life care settings encounter unique barriers to quality care. For example, LGBT individuals may distrust specific members of palliative care teams, such as a pastor because of past rejections by faith-based communities. Other barriers include high levels of familial rejection, fear of revealing minority status, and a lack of legal protection. Methods: In 2014 and 2015, a CDC-funded multidisciplinary expert panel met to develop the best practices across the cancer care continuum for the LGBT community. The experts drew on available literature and clinical and community experience. They reached a consensus regarding recommendations that were later reviewed using a process that elicited comments from providers, patients, and community and national organizations. Results: Recommendations were made in 7 domains: 1) cancer prevention, 2) cancer screening, 3) diagnosis, 4) treatment, 5) survivorship, 6) palliative and end-of-life care, and 7) public health. Here we report the panel’s recommendations for improving palliative and end-of-life care for LGBT cancer patients. Conclusions: The barriers for LGBT cancer patients to access quality palliative and end-of-life care exist, and the subsequent healthcare disparities are often invisible to healthcare providers. Implementation of these national recommendations will help eliminate the disparities that LGBT patients and their families experience when facing cancer.

Current Best Practices for Sexual and Gender Minorities in Hospice and Palliative Care Settings

“…Despite the paucity of research on the end-of-life and palliative care experience of SGM patients and their families, international palliative care organizations and a recent U.S.-based Centers for Disease Controle funded expert panel on SGM cancer patients have proposed best practices for SGM people in HPC settings. 37,41 These guidelines were developed by a consensus panel of 60 experts in public health, health service research, oncology, palliative medicine, SGM advocacy organization representatives, SGM health center medical providers, and SGM community members including cancer patients and survivors from throughout the U.S. The initiative was supported by a grant from the Centers for Disease Control and led by Health Link and the National LGBT Cancer Network.…”

“…Recommendations were then rigorously reviewed and revised. 37,41 Absent randomized controlled trials, these guidelines lack the levels of rigorous evaluation necessary for a traditional best practice determination. The strategy used to develop these best practice guidelines was adapted from the knowledge brokerage field where a component of the model is the synthesis of community knowledge and practice with general and specific research knowledge with the goal of translating into practical applicability.…”