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

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.

本研究关注LGBT老年人在临终关怀中面临的不平等待遇，特别是在他们的健康照护愿望被忽视、选择性家庭成员未能参与决策、以及遭受孤立、欺凌或虐待的情况下。这些问题导致LGBT老年人接受低质量的医疗照护，尤其是在关怀过渡到临终阶段时，存在43%的临终关怀专业人士曾亲眼目睹针对LGBT患者的歧视性行为。

本研究通过31次深入访谈收集了LGBT老年人的个人故事，以探讨他们在临终关怀中的经历。研究选择了其中一位参与者Esther的故事，旨在展示如果在患者临终时未能与其进行开放讨论，护理质量如何可能受到影响。

本研究发现，LGBT老年人在临终关怀过程中面临显著的歧视和护理质量差的问题。患者的健康愿望常被忽视或无视，选择的家庭成员在决策中较少被考虑。调查显示，43%的临终关怀专业人士曾目睹过对LGBT患者的歧视行为。尽管其他医疗领域已开始常规收集性别和性取向数据，临终关怀机构却未普遍评估患者的性别身份信息，导致了缺乏可见性和责任制，从而加剧了患者的脆弱性和歧视治疗的风险。