Gerontology Research Centre, Simon Fraser University, Vancouver BC
Fostering End-of-Life Planning among Older LGBT Adults: The development of the British Columbia LGBT End-of-Life Resource Inventory

Authors
Robert Beringer MA, Gloria Gutman PhD, and Brian de Vries PhD

Background

Why should we consider Lesbian, Gay, Bisexual and Transgender (LGBT) end-of-life conversations and health planning distinct from the general population?

First and foremost, LGBT aging and planning for end-of-life is different because the current cohort of LGBT seniors grew up in a dramatically different society, one in which they were often discounted, discarded, and/or dismissed. For example, defining seniors as those 60+ years of age, it is likely that many of these older adults came out at a time when homosexuality was both illegal and still considered to be a mental illness (Orel & Fruhauf, 2015). Further, many worked in a time when discovery of one’s sexual orientation could result in the loss of a job and therefore lived closeted or dual lives. Many experienced stigma and discrimination over the course of their lives (de Vries, 2015; Meyer, 2003). Statistically, LGBT older adults are more likely to be single and live alone (many believed that marriage between same-sex couples was not possible during their lifetime) and with limited support networks, a characteristic that may exacerbate a lack of end-of-life planning in this community (MetLife, 2010). While LGBT seniors have witnessed significant progress in regard to the advancement of human rights and inclusion, there is still much work to be done. Most, for example, believe that they would be isolated from other residents and discriminated against by staff (and other residents) in long-term care settings (SAGE, 2011). As a result, LGBT seniors may delay or avoid treatment when an LGBT-friendly doctor or other health care provider cannot be found (Met Life, 2010). We envisioned that such barriers and delays may extend into the realm of end-of-life planning when it comes to LGBT seniors and the goal of our project was to explore and redress these disparities.

Our Project

The Fostering End-of-Life Conversations, Community and Care among older LGBT adults project was funded under the 2013 TVN Catalyst Research Program. The research team comprised faculty and research assistants from six Canadian and one U.S. university. In addition, over 20 community organizations from across the country partnered with the team in the implementation of this study. Focus groups were held with LGBT older adults and service providers in Vancouver, Edmonton, Toronto, Montreal and Halifax between August 2014 and March 2015. This paper is focused on results from the data collected at the Vancouver site. A total of four focus groups were held at this location: gay and bisexual men (n=15); lesbian and bisexual women (n=12); transgender (n=9); and service providers (n=7).

The focus groups were recorded, the tapes transcribed and analyzed for themes. This analysis provided the impetus for development of The LGBT End-of-Life Conversations website and The British Columbia LGBT End-of-Life Resource Inventory, the subject of this paper.

Results

The focus groups revealed a need and interest in the development of a guide to resources that are LGBT-friendly. Even as the LGBT persons in our group felt some ambivalence toward information and communication technology (“I nearly threw [my computer] out the window yesterday; it is so frustrating”), many also referred to its benefit and potential—particularly in the search for information and support. Comments revolved around the need for LGBT-related information (“we needed to go to the heterosexual [websites]; when I went to queer ones…there wasn’t much”), the need to determine LGBT-friendliness (“most websites are tailored to heterosexuals”), and the need for a clear indication or assessment of friendliness (“it’s one less barrier”). These comments and suggestions directed our efforts in the development of the British Columbia LGBT End-of-Life Resource Inventory.

Resource Inventory development

Internet searches were conducted between October and December 2014 by combining terms to describe the population (LGBT, lesbian, gay, bisexual, transgender, older, senior) with terms to describe the areas of interest (end-of-life planning, advance care planning, financial planning, independent living, senior housing, retirement community, home care, assisted-living, residential care, health care, palliative care, and hospice). These searches were supplemented by referrals by our community partners.  LGBT ‘”friendliness” was operationalized using three tiers:

  1. An “LBGT Organization” is an organization that is developed by and/or for LGBT persons.
  2. An “LBGT Friendly (formal)” organization is an organization that openly advertises LGBT friendliness on its website by way of content such as mission statements, codes of conduct, or other LGBT inclusive statements. We felt to be included in this category such statements had to be LGBT specific and general statements such as “we recognize diversity” did not qualify.
  3. An “LGBT Friendly (informal)” organization is one that advertises as LGBT friendly in an LGBT directory or is referred to as LGBT friendly by an LGBT directory or is a service provider with links to the LGBT community. Such organizations however did not openly advertise LGBT friendliness on their websites.

The result was a 54-item end-of-life planning resource inventory for LGBT British Columbian residents. The key finding in the development of the inventory was that there was very little intersection among the search parameters pertaining to LGBT persons and end-of-life. That is, websites that have been designed by and for the LGBT community possessed little information regarding end-of-life planning. Similarly, websites with information pertinent to end-of-life planning possessed little or no reference to the LGBT community. As a result, and in an effort to provide the LGBT community with a useful resource, we chose to include a second section in the published inventory describing general end-of-life planning resources - the Canadian Virtual Hospice for example.

Reception

The British Columbia LGBT End-of-Life Resource Inventory was presented to all attendees at a town hall-type meeting held in January 2015 (n=93). We received initial positive commentary that the inventory is “a valuable resource, (and) just what we need” in the LGBT community. While such a reception is not uncommon, we were surprised to receive an email less than 48 hours after the town hall from one of the organizations listed on the inventory requesting an upgrade in status from LGBT-friendly (informal) to LGBT-friendly (formal).

“…after listening to you describe the 'screening process' for organizations to get on the 'LGBT friendly' list for the resource directory, it hit me that I (in representing the organization I work for) had been VERY negligent in this respect”

This particular organization made changes to its website (adding rainbow flag colors to the logo) on the day following the Vancouver town hall so that the website would clearly indicate its desire to serve the LGBT community.

In the days following the Vancouver town hall we were pleased to see a positive buzz on social media websites. Attendees spontaneously posted on Facebook that the town hall was “insightful and informative” and described the BC inventory as a “remarkable” resource. Our goal with the inventory is that it is to be a “living document” and we have pledged quarterly updates. Through continued dialogue and feedback from the LGBT community, the inventory has grown from 54 to 65 LGBT-friendly listings in the eight months since its launch at the Vancouver town hall. It also served as a stimulus for development of resource inventories at the other four sites, each of which heard comments in their focus groups similar to those expressed in Vancouver about the need for information about LGBT safe and welcoming end-of-life resources. 

Conclusions

The focus group research confirmed that a lack of LGBT-friendly resources has the potential to impact and delay health and end-of-life planning. While currently many formal organizations have employed the blanket term “inclusive to all,” this has not adequately served the LGBT population—often manifested in a default presumption of heterosexuality. In the development of the British Columbia LGBT End-of-Life Resource Inventory and those subsequently developed for Edmonton, Toronto, Montreal and Nova Scotia, it was discovered that end-of-life planning resource organizations and their websites had little mention of LGBT inclusivity and friendliness. The positive reception to our Resource Inventories attests to the need for the development of LGBT specific and friendly resources. This is especially true for the older cohort of LGBT seniors who came of age in an environment hostile to homosexuality. The Resource Inventories are available on our website at: www.sfu.ca/lgbteol.html.



References

de Vries, B. (2015). Stigma and LGBT aging: Negative and positive marginality. In N.A. Orel & C.A. Fruhauf (Eds.), The Lives of LGBT Older Adults (pp.55-72). Washington, DC: American Psychological Association.

MetLife Mature Market Institute. (2010). Still out, still aging. Westport, CT: MetLife Mature Market Institute.

Meyer, I.H. (2003). Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: Conceptual issues and research evidence. Psychological Bulletin, 129(5), 674-697. doi: 10.1037/0033-2909.129.5.674

Orel, N.A., & Fruhauf, C.A. (2015). The intersection of culture, family, and individual aspects: A guiding model for LGBT older adults. In N.A. Orel & C.A. Fruhauf (Eds.), The Lives of LGBT Older Adults (p.3-24). Washington, DC: American Psychological Association.

SAGE (2011). LGBT older adults in long-term care facilities: Stories from the field. http://www.lgbtagingcenter.org/resources/resource.cfm?r=54