End-of-Life Care Planning for Lesbian, Gay, Bisexual, and Transgender Individuals

Abstract

Advance care planning is important for all adults. To facilitate conversations about patients' preferences, clinicians need to be aware of how identities and relationships may shape priorities and concerns. This qualitative study solicited advance care planning priorities among lesbian, gay, bisexual, and transgender (LGBT) individuals to explore whether sexual orientation and gender identity shape concerns about care at the end of life. Data were collected from 30 LGBT adults on the east coast through focus groups and interviews using purposive sampling. Transcribed discussions were analyzed using grounded theory. Participants regarded end of life as any period after the loss of decision-making capacity and felt strongly that individuals in that state would need an advocate to ensure that they were cared for with respect and dignity; many lacked confidence that the health care system would do so without prompting. Participants who had partners or children hoped that family would serve as advocates but worried that they might outlive their partners; participants who were single worried that the advocate role was too great a burden to ask of friends or distant relatives. Providers can encourage open dialogue and more fully capture LGBT patients' needs through sensitive, respectful communication and by creating environmental signals of LGBT inclusivity.