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

Jane Lowers, MPA


Journal of Hospice and Palliative Nursing. 2017;19(6):526-533. 

In This Article

Abstract and Introduction


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.


The 2014 Institute of Medicine report "Dying in America"[1] emphasizes the need for advance care planning (ACP) conversations among patients, their family members, and clinicians[1] to identify patients' priorities for care in the event that they cannot advocate for themselves, as well as a health care proxy to make those decisions.

Previous research has found that lesbian, gay, bisexual, and transgender (LGBT) individuals are slightly more likely than their straight peers to have conducted ACP.[2] The need to actively seek legal protections for one's relationship, particularly in the years before gay marriage was legalized, is commonly cited as a driver for LGBT individuals' documentation of ACP.[3,4]

To be effective, an individual's advance care preferences need to be documented and communicated to decision-makers and providers. The question of who is the most logical candidate to serve as proxy seems to be changing as American family structures diversify beyond traditional nuclear constructs.[5] Lesbian, gay, bisexual, and transgender populations may define family differently than others, with two-thirds of LGBT baby boomers reporting that they consider friends to be their "chosen family."[2] Lesbian, gay, and bisexual individuals are less likely than heterosexual counterparts and transgender individuals are less likely than cisgendered peers to report being partnered;[2] approximately 37% of LGBT individuals have had a child.[6] These demographic factors have substantial implications for ACP as LGBT individuals seek appropriate health care proxies and caregivers: Traditional heteronormative scenarios, in which caregiving falls to children, may be unavailable. Other relationships, such as friendship networks, may fill these gaps. One study of LGBT adults aged 50 to 95 years found that 35% were serving as a caregiver to a spouse or partner and 32% performed that role for friends.[7] Although the right to marry affords same-sex spouses the right to serve as the primary decision-maker for a spouse in the absence of other documentation of a proxy (K. Loewy, personal communication, February 14, 2016), the right to marriage for same-sex couples itself does not guarantee protection from discrimination or bias, and it offers no change in protections for unmarried individuals.

This study explored LGBT individuals' priorities for their own health care at the end of life and perceived barriers—personal, institutional, or societal—to receiving desired care.