“She’s Dying and I Can’t Say We’re Married?”: End-of-Life Care for LGBT Older Adults

Abstract

Abstract Lesbian, gay, bisexual, and transgender (LGBT) older adults are at particular risk for receiving inequitable end-of-life care. Their health care wishes may be ignored or disregarded, their families of choice are less likely to be included in their decision making, and they may experience increased isolation, bullying, mistreatment, or abuse, which ultimately contribute to receipt of poor-quality health care. This is particularly important during sensitive transitions along the care continuum to end-of-life settings; 43% of respondents of a 2018 survey of 865 hospice professionals reported having directly observed discriminatory behavior toward LGBT patients. Lack of visibility and accountability perpetuates vulnerabilities and the potential for discriminatory treatment. Unfortunately, while other areas of health care have prioritized and normalized collecting sexual orientation and gender identity (SOGI) data, hospices do not routinely assess patients’ SOGI in the context of end-of-life wishes and decisions. Drawing insight from a sample of 31 in-depth interviews with older LGBT adults, this paper focuses on one participant’s story—Esther’s. We chose her story to illustrate how care can be compromised at the end of life if an open discussion with patients about what and who matters most to them at the end of life, is avoided.