WITHDRAWN: End-of-Life Care Perceptions and Preparations of Lesbian, Gay, Bisexual and Transgender Older Adults

Background and Purpose: There are currently 1.1 million individuals 65 years and older who identify as lesbian, gay, bisexual, and transgender (LGBT). By 2030, the population is to more than double. Being less likely to have children, more likely to live alone, and more likely to experience their circle of support become smaller, LGBT older adults may need to rely on social services and long term care providers for their end-of-life care planning and implementation.

There is little research regarding end-of-life care and the LGBT population beyond its relation to HIV/AIDS. This paper helps to lessen the dearth of knowledge regarding LGBT end-of-life care, within an older population. By examining LGBT older adults’ perceptions and preparations of end-of-life care, this paper strives to fill the gap of understanding regarding what older LGBT adults think of, prepare for, and decided regarding their end-of-life care.

Methods: Seventeen in-depth, semi-structured interviews were conducted with individuals who identify as LGBT and are 60 years or older. Participants were recruited via community partners and snowball sampling. The sample was predominately male (58.82% male, 29.41% female, 11.77% non-binary) and had a mean age of 69.59 years. Regarding sexual orientation, 82.35% identified as gay or lesbian, 5.88% bisexual, and 11.76% other (did not identify as heterosexual). Among the sample, 47.05% of participants were single, 35.59% partnered, and 17.65% were legally married. Interviews examined participants’ awareness of end-of-life care, elicited what goals they had for their own end-of-life experience, explored the participants’ perception of the feasibility of their end-of-life goals, and lastly looked at what preparations individuals had taken. Interviews were transcribed verbatim and coded thematically guided by the principles of grounded theory.

Findings: LGBT older adults articulated multiple factors that led to end-of-life care planning. Before end-of-life care decision-making took place, LGBT older adults expressed establishing goals and recognizing their concerns about end-of-life care. Participants wished for their “true selves” as LGBT be respected as well as their “family of choice” (individuals who are considered family though not legally or genetically tied) recognized. Participants also expressed concerns about their end-of-life care experience that included not wanting to be a burden on loved ones as well as being able to afford end-of-life care. This was followed by participants expressing their uncertainty or awareness of steps necessary to prepare for end-of-life care. Lastly, participants were uncertain about how accepting institutionalized care would be of their LGBT identity.

Conclusion and Implications: In addition to sharing similar concerns with non-LGBT older adults (e.g. cost of care), older LGBT adults have their own unique desires and concerns (e.g. being “out” and respected as their true selves). LGBT older adults may need the support of social service providers and long-term care communities to understand and follow through with their end-of-life care. With lack of legal protection and recognition that LGBT older adults have a lower likelihood to access services, providers must educate this population about end-of-life planning, stress the importance of legal documentation, as well as provide a LGBT welcoming, culturally competent environment.