February/March 2015 - Fostering end-of-life conversations, community and care among LGBT older
adults is a one-year study, funded by TVN (Technology Evaluation in the Elderly Network). Drs. Gloria Gutman (Professor/Director Emerita SFU Gerontology Dept. & Gerontology Research Centre) and Brian de Vries (Adjunct Professor, SFU Gerontology; Professor, (former Director) Gerontology Program, San Francisco State University) are principal investigators in a research project spread over five sights: Vancouver, Edmonton, Toronto, Montreal, and Halifax. They are seeking to explore two important issues: the first looks at the ways in which older lesbian, gay, bisexual and transgender (LGBT) Canadians prepare for later life and end-of-life, seek and consider care, and engage networks of support; and the second examines the role that internet-based technology might play in supporting these activities.
LGBT older adults have been described as an “invisible” population (Brotman, Ryan, & Cormier, 2003; de Vries & Blando, 2004) This invisibility has multiple causes often rooted in stigma and neglect (National Senior Citizen’s Law Center, 2011) and results in situations in which older LGBT adults find themselves back “in
Recent research exploring the lives of LGBT older adults has revealed demographic and health conditions rooted in stigma and exacerbated by heteronormativity (de Vries, 2013). For example, relative to heterosexual men and
women of comparable ages, LGBT older adults are up to three times more likely to live alone, and are up to one-third less likely to be partnered (Adelman et al., 2006; MetLife, 2010; Wallace et al., 2011). LGBT older adults are about five times less likely to have children (Statistics Canada, 2011) or to receive support from the
children that they do have (Fredriksen- Goldsen et al., 2013). As a result, LGBT older adults report high rates of loneliness and isolation (Kuyper & Fokkema, 2010).
Research reveals a heteronormative pattern of support seeking (e.g., Cantor & Mayor, 1978) wherein care is both
expected and first sought from spouses and immediate family members, followed by resorting to formal services.
Substantial research notes the lack of LGBT awareness and acceptance on the part of many health and social agencies providing services to older adults (Sussman et al., 2012). Older LGBT adults often approach these service providers with fear and mistrust (National Senior Citizens Law Center, 2011), and delay seeking needed formal
care (MetLife, 2010). These issues exacerbate and coalesce around the issue of planning for end-of-life care,
and often leave many LGBT older adults woefully unprepared.
Conversations about end-of-life care are rare, and when they do occur, are often family-centred. LGBT older adults, less likely to have supportive kin, are less likely to have these conversations. The study has three broad goals: to understand and describe the issues faced by LGBT older adults in discussing and planning for end-of-life care; to share this understanding with the larger community; and to create a pilot web-based platform that will provide a supportive environment to offer relevant information, thereby empowering and improving the well-being of this historically disenfranchised group. The first two goals were achieved by conducting focus groups and
community town hall meetings. The final goal encompasses developing a Resource Inventory to be included in the
The Vancouver site hosted four focus groups in September and October of 2014: one each for lesbian and
bisexual women, gay and bisexual men, transgender adults, and community service providers. The community
response to the request for participants was overwhelming. All of the groups were well attended, and participants
eagerly shared their stories and experiences. While conversations around end-of-life planning may be difficult
to initiate, it immediately became apparent that, given the opportunity and a safe space, focus group participants
wanted to talk. The team performed a preliminary analysis of the data for presentation at the town hall meeting.
The Vancouver town hall meeting occurred on the evening of January 28, 2015, at the Harbour Centre Campus of
Simon Fraser University and the audience filled the room beyond capacity. Dr. de Vries and I presented the preliminary findings from the Vancouver focus groups.
Three focus group participants, including Mr. Bradford McIntyre,
spoke about their personal experiences in making plans for end-of-life care. Research assistant Robert Beringer (MA, SFU Gerontology) another member of the team, presented the Resource Inventory. Finally, several service providers, including a lawyer whose speciality is end-of-life documentation, spoke to the audience. The town hall ended on a high note once again demonstrating that people have a desire to talk about these issues and will readily do so when presented the opportunity.
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