Experiences of LGBT Patients and Family Members with Hospice and Palliative Care (TH352)

Abstract

•Describe institutional and provider policies regarding LGBT patients and family members in hospice and palliative care.•Describe the extent to which LGBT patients and their close family members and friends receive inadequate, disrespectful or abusive care due to their sexual minority status.•Discuss data-based recommendations for: provider education and practices; institutional and public policy; and future research. The lesbian, gay, bisexual, and transgender (LGBT) community experiences discrimination and stigma in accessing health care and social services – including palliative, hospice, and long-term care. Health care providers may fail to recognize or address disparities in care. Providers and institutions may be uncomfortable with sexual orientation and gender identity and expression issues, and often don't inquire about these. Research shows that LGBT patients fear being open about their identities, not receiving equal or safe treatment, and having their family of choice and designated surrogates disrespected or ignored by health care staff. There are approximately 2.7 million LGBT adults in the U.S. age 50+, with approximately 1.1 million age 65+. With the projected increased number of older adults and improved treatments that extend the life of seriously ill individuals, even more LGBT older adults, and their families, will require palliative and end-of-life care in coming years. This study examines inadequate, disrespectful, and abusive care to patients and family members due to their sexual orientation or gender identity. A cross-sectional study using an online survey was completed by 865 providers, including social workers, physicians, nurses, and chaplains. Among respondents, 55% reported that LGB patients were more likely to experience discrimination at their institution than non-LGB patients; 24% observed discriminatory care; 65% reported that transgender patients were more likely than non-transgender patients to experience discrimination; 20% observed discrimination to transgender patients; 14% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 13% observed the spouse/partner or surrogate being treated disrespectfully. Findings reported also include: institutional non-discrimination policy, staff training, intake procedures, and comfort in assessing LGBT status. Implications for future research, institutional and public policy, and practice will be presented, including current policy barriers to respectful and non-discriminatory care, and the importance of staff training to address inadequate knowledge and discriminatory behaviors.