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
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
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.
Adelman, M., Gurevitch, J., de Vries, B., & Blando, J. (2006). Openhouse: Community building and research in the LGBT aging population. In D. Kimmel, T. Rose & S. David (Eds.) Lesbian, gay, bisexual, and transgender aging: Research and clinical perspectives (pp. 247-264). New York: Columbia University Press.
Cantor, M. H., & Mayer, M. (1978). Factors in differential utilization of services by urban elderly. Journal of Gerontological Social Work, 1(1),47-61.
Brotman, S., Ryan, B., & Cormier,
R. (2003). The health and social
service needs of gay and lesbian
elders and their families in Canada.
The Gerontologist, 43, 192-202.
de Vries, B. (2013). LG(BT) persons
in the second half of life: The
intersectional influences of stigma
and cohort. LGBT Health 1(1), 16-21.
de Vries, B., & Blando, J. (2004).
The study of gay and lesbian lives:
Lessons for social gerontology. In G.
Herdt & B. de Vries (Eds.), Gay and
lesbian aging: Research and future
directions (pp. 3-28). New York:
Fredriksen-Goldsen, K., Kim, H.-J.,
Hoy-Ellis, C., Goldsen, J., Jensen, D.,
Adelman, M., Costa, M., & de Vries,
B. (2013). Addressing the needs of
LGBT older adults in San Francisco:
Recommendations for the future.
San Francisco, CA: Department of
Kuyper, L., & Fokkema, T. (2010).
Loneliness among older lesbian,
gay, and bisexual adults: The role of
minority stress. Archives of Sexual
Behavior, 39(5), 1171-1180.
MetLife Mature Market Institute.
(2010). Still out, still aging.
National Senior Citizens Law Center
(2011). LGBT older adults in long-
term care facilities: Stories from the
Statistics Canada. (2011). Gay pride by
the numbers. Ottawa, ON: Statistics
Sussman, T., Churchhill, M.,
Brotman, S., Chamberlain L., et
al. (2012). Identifying barriers,
developing solutions: Addressing
the health and social needs of gay,
lesbian, bisexual and transgender
older adults who live in long-term
care homes. Montreal, PQ.
Wallace, S.P., Cochran, S.D., Durazo,
E.M., & Ford, C.L.(2011). The Health
of Aging Lesbian, Gay and Bisexual
Adults in California. Los Angeles,
CA: UCLA Center for Health Policy