January 30th, 2015
End-of-life conversations are not happening early enough in LGBT communities, according to research looking at care services and preparedness for death among lesbians, gay men, and trans* people.
Led by Brian de Vries and Gloria Gutman of Simon Fraser University, the study highlights that LGBT older adults are more likely to live alone, with no partner and no children, leaving them without typical forms of support as they age. They have well-founded fears of neglect and abuse from staff in health and social services. On top of the usual issues of aging, LGBT people face stigma related to their sexual and gender identities.
At a community meeting held on January 28, the researchers presented the results of focus groups held in Vancouver. They found overlapping themes among lesbians, gay men, and trans* people, though sometimes the groups articulated them through specific experiences.
All participant groups expressed concern about who would represent and care for them in the future. They weren’t sure who to ask and worried about burdening others. Some spoke about relying on family members or friends, while others said they didn’t have anyone. Trans* people spoke more about rejection.
Class issues were apparent among lesbian and trans* participants. For lesbians, this was tied to poverty levels among women and the financial precarity that would ensue if a partner died. For trans* people, this related to access to gender-affirming surgeries.
Participants shared stories about heteronormativity and abuse in health and social services. Although some organizations, such as Haro Park Centre and the Alzheimer Society of BC, indicated they were making an effort to respectfully and supportively recognize the identities of LGBT people, it’s clear that most services have a long way to go.
Lawyer Vince Connors explained that advance care planning is one way for people to have some control. This can include appointing someone to make personal and medical care decisions for you through a representation agreement, as well as appointing someone to make financial decisions for you through a power of attorney. Drawing up a will is also important because it will make things easier for loved ones left behind. Connors emphasized that all of this needs to done beforehand, while you’re capable.
The study seems to be meeting its goal of fostering end-of-life conversations among LGBT people. Bradford McIntyre, a participant who has been living with HIV for 30 years, said he hadn’t spent time thinking about aging, because he’d been trying to survive. Now, because of the study, he’s having end-of-life conversations with his husband.
Another participant, Christine Waymark, said that LGBT people can use their outside position to make noise about what’s needed. The study has provided people with the opportunity to be active in their own lives, she said.