Fostering End-of-Life Conversations, Community and Care Among LGBT Older Adults

Publications

de Vries, B. & Gutman, G. (2016). Preparations for the very later years among LGBT older adults. Generations, 40(2), p. 46-48.

Graham, Aynsley. (February 2015). LGBT Inclusive End-of-Life Services within Edmonton. Human Ecology Directed Research Project: Final Report, University of Alberta.

de Vries, B. & Gutman, G. (2015). Later life preparation by older LGBT persons: Perspectives from Canadian research. The Gerontologist, 55 (Suppl 2):618 [Symposium Overview Abstract].

de Vries, B., Gutman, G., Fast, J., Mock, S., Chamberland, L., Humble, A., Gahagan, J. & Aubert, P. (2015). Preparations for End of Life Among Older LGBT Canadians. The Gerontologist, 2025, 55 (Suppl 2):618 [Abstract of presented paper].

Gutman, G., de Vries, B., Chamberland, L., Gahagan, J., Humble, A., Pang, C., Paterson, S., and Fast, J. (2015). Canadian service providers’ perspectives on needs and barriers to effective end-of-life planning among LGBT older adults. The Gerontologist, 2025, 55 (Suppl 2):618 [Abstract of presented paper].

Beringer, R., Gutman, G., & de Vries, B. (2016, February).  Fostering end-of-life planning among older LGBT adults: The development of the British Columbia LGBT End-of-Life Resource Inventory.   Canadian Virtual Hospice Exchange.

Beringer, R., Gutman, G. & de Vries, B. (2016). Internet use among LGBT seniors in Canada. Gerontechnology, 15 (suppl):72S; doi:10.4017/gt.2016.15.s.913.00

Presentations

Gutman, G. & de Vries, B. (May 16-17, 2016). Late life concerns, issues and innovations in the LGBT community.  Presentation at 25^th John K. Friesen conference “Late life issues and innovations”, Vancouver, Simon Fraser University.

Mock, S. E., Gutman, G., de Vries, B., Pang, C., & Walker, E. P. (March 9-11, 2016). The role of technology in quality of life and end of-life planning among LGBT adults and their service providers. Paper presented at Rainbow Health Ontario Conference, London, ON.

de Vries, B. & Gutman, G. (Feb. 25, 2016). Planning for end of life: Perspectives from LGBT communities. Invited presentation at 5^th Annual Quality Forum, Vancouver, BC.

Aubert, P. (Feb. 14, 2016). End-of-life concerns among older gay men: The pervasive influence of stigma. Presentation to Roundhouse Men’s Gay and Gray Discussion group, Vancouver, BC.

Gutman, G. (Nov. 10, 2015). Fostering end-of-life conversations, community and care among LGBT older adults. TVN Mindmerge, Victoria, BC.

de Vries, B. (Nov. 6, 2015). LGBT persons in the second half of life. REALpac Western Canadian Seniors Housing Symposium, Vancouver, BC.

Aubert, P., Furlotte, K., de Vries, B. & Gutman, G. (Nov. 5-6, 2015). End-of-life concerns among older gay men: The pervasive influence of stigma. 2015 Gay Men’s Summit, Vancouver, BC.

Savage-Beringer, R., Gutman, G. & de Vries, B. (Oct. 25, 2015). Connecting with community: The development of a lesbian, gay, bisexual and transgender (LGBT) End-of-Life Resource Inventory for British Columbia. Canadian Association on Gerontology Annual Scientific and Educational Meeting, Calgary, AB.

Gutman, G. (Oct. 17, 2015). End-of-life and bereavement care in LGBT communities. Vancouver Island Federation of Hospices Education Day, Nanaimo, BC.

de Vries, B. & Gutman, G. (Oct. 6-7, 2015). Preparation for end of life among LGBT older adults. 2^nd annual CSU Institute for Palliative Care Palliative Care Symposium, San Marcos, CA.

Gutman, G. & Aubert, P. (June 25, 2015). The LGBT End-of-Life Conversations Project. Presentation at Vancouver Coastal Health Clinicians Education Day, Vancouver, BC.

Humble, J. Gahagan, S. Paterson & K. Furlotte. (June 12, 2015). LGBT individuals and end-of-life preparation: reflections from the Nova Scotia context. Presentation at 5^th Annual Northwood Research Symposium, Research in Aging Continuing Care and Beyond, Halifax, NS.

Gutman, G., de Vries, B., Gahagan, J., Humble, A, Fast, J., Mock & S., Chamberland, L., Furlotte, K. (May 25-28, 2015). End-of-Life Conversations with Older LGBT Adults: Needs of an ‘Invisible Community. Paper presented at Public Health 2015, CPHA Annual Conference, Vancouver, BC.

Gutman, G., Beringer, R. &  de Vries, B. (May 14-15). Using a web based platform to foster community and advance care planning among LGBT older adults. Paper presented at Harnessing Technology for Aging-in-Place 24^th annual John K. Friesen conference, Vancouver, BC.

Beauchamp, J., Chamberland, L. &  Dumas, J. (May 8, 2015). LGBT : préparation de leur avenir, de leur fin de vie et soutien communautaire. Poster presented at CREGÉS annual Symposium From loss to rebuilding: seniors and the grieving process, Montreal, QC.

de Vries, B., Gutman, G., Chamberland, L., Fast, J., Gahagan, J., Humble, A. & Mock, S. (April 23-26, 2015). End of Life Discussions among LGBT Older Canadians. Paper presented at the 8^th International Association of Gerontology and Geriatrics European Region Congress, Dublin, Ireland.

Paterson, S. & Furlotte, K. (March 27-28, 2015). Older LGBT Adults Concerns for Care at End-of-Life. Dalhousie University Health and Human Performance Graduate Student Society Crossroads Interdisciplinary Health Conference. Halifax, NS.

de Vries, B. & Gutman, G. (April 9, 2014). Fostering end-of-life conversations, community & care among LGBT older adults. SFU Health Research Day. Burnaby, BC.

de Vries, B. & Gutman, G. (September 21, 2014). Fostering end-of-life conversations, community & care among LGBT older adults. TVN 2nd annual conference on improving care for the frail elderly. Toronto, ON.

Rationale: The demographic realities of LGBT aging were hypothesized to have pervasive effects on end-of-life experiences—from where, how and by whom care is provided to delimiting preparations and discussions about end of life wishes and plans.

Objectives: We sought to understand and describe the issues involved in and levels of preparedness for end-of-life among LGBT adults aged 60 and older. Town hall meetings would help foster discussion and community through town-hall meetings sharing local resources and opportunities with the goal of encouraging decisions and actions by attendees. Lastly a proof-of-concept pilot online intervention-web-based platform would be built to provide a supportive environment wherein relevant information is offered and discussion is shared.

Lay Title: The Missing End-of-Life Discussions Among Lesbian, Gay, Bisexual and Transgender (LGBT) Older Canadians

Key Findings:

• LGBT older adults expressed great concern about “nobody being there” for them at the end of life and feared having to “go back into the closet” to get the care they needed.
• In preparing for end of life, LGBT older adults are more likely to have thought about the disposition of their worldly goods than about the kind of care they would like to receive during their last weeks or months of life.
• Service providers realize that they could do more to make LGBT persons feel welcome in care settings.

Why was this study was needed?

There was reason to believe LGBT older adults might have greater need for end-of-life preparation than their heterosexual peers because they are more likely to live alone, have fewer social supports and have more disabilities.  Yet little attention had been given to exploring this issue or to identifying facilitators and barriers to end of life planning in this population.  In a series of focus groups held across Canada we learned that approximately one-third of LGBT older adults had not discussed their care needs and preferences with anyone, reflecting their restricted social support networks comprised mainly of friends rather than kin.  They also expressed difficulty in identifying LGBT affirmative facilities and services related to late life/end of life planning.

Suggestions on how these findings could impact frail older adults and/or their family caregivers and how this might be measured:

To help address these findings, we created a website (https://www.sfu.ca/lgbteol.html) that provides information on our study, on how to prepare for end of life, and the services available in the locations of our research that are LGBT-friendly.

• For LGBT older adults, this website provides information and links to help better prepare for end of life and to reach out to other LGBT older adults to have the missing but needed end-of-life discussions.
• For older adults in general, this website provides information on and help to address some of the barriers to end-of-life discussions.
• For service providers, this website provides information about the issues concerning LGBT older persons at the end of life as well as affirmative services.

Brief comment on type of study in lay terms:

• Our goal was to better understand end of life issues experienced by LGBT older Canadians.
• In the first part of the project, we brought together groups of lesbian, gay, bisexual, and transgender people (as well as people providing service to the older population) to talk about the issues affecting LGBT persons at the end of life.
• Following these focus groups, we held town hall meetings to share the findings of our research with the wider LGBT community, seniors organizations, NGOs and service providers to start the conversation and assist them in learning about community resources.
• The population we studied was older LGBT persons, with at least one chronic condition, who had some comfort and experience with computers.
• The study took place in Vancouver, Edmonton, Toronto, Montreal and Halifax. The website that was created is hosted on a continuing basis by the Gerontology Research Centre at Simon Fraser University.
• Originally envisioned as a pilot website serving mainly British Columbia, it was broadened to provide a set of Resource Inventories for BC, Edmonton, Toronto, Montreal and Nova Scotia as well as general interest information for LGBT older adults from across the country.

Lay Title: The Missing End-of-Life Discussions of Lesbian, Gay, Bisexual and Transgender (LGBT) Older Canadians

Key Findings:

• LGBT older adults are likely to grow old without children, without partners, and to live alone; as a result, LGBT older adults expressed great concern about “nobody being there” for them at the end of life and feared having to “go back into the closet” to get the care they needed
• Differences exist in the experiences of the subpopulations included under the LGBT umbrella: issues of AIDS were more prominent among older gay men; economic and class issues were noted more frequently by older lesbians; transgender older adults often spoke of the disrespect they received at the hands of healthcare and social service providers as well as within the LGBT community.
• Service providers both understand the issues confronting LGBT older adults and realize that they could do more to make LGBT persons feel welcome in senior service settings

Why was this study was needed?

LGBT older Canadians have faced stigma and discrimination over the course of their lives from doctors and others in the healthcare field—those same professionals who most often assist individuals in end-of-life preparations. Additionally, those who provide services to older adults report that LGBT persons often feel unwelcome in settings where needed services are provided.  As a result, LGBT older adults are often reluctant to confide in healthcare providers and utilize formal facilities and services. They expressed difficulty in identifying individuals who might replace the kin who traditionally provide care. They also expressed difficulty in identifying local LGBT affirmative facilities and services related to late life/end of life planning.

Suggestions on how administrators or policy maker could use the findings:

• In senior service settings, ensure that publications and public information is LGBT-inclusive—present images of same-sex couples, for example
• Expand awareness of circles of support and potential caregivers outside of traditional family contexts (e.g., in approaching older LGBT adults, on intake forms)
• Be sensitive to the stigma LGBT persons have experienced at the hands of social and health services over the course of their lives

Brief comment on type of study in lay terms:

• Our goal was to better understand end of life issues for LGBT older Canadians
• The first part of the project used a focus group design, bringing together groups of lesbian, gay, bisexual, and transgender persons (as well as persons providing service to the older population) to talk about the issues affecting LGBT persons at the end of life.
• The second part of the project involved town hall meetings to share the findings of our research with the wider LGBT community, NGOs and service providers to start the conversation and assist them in learning about local and national resources
• The population we studied was older LGBT persons, with at least one chronic condition, who had some comfort and experience with computers.
• The study took place in Vancouver, Edmonton, Toronto, Montreal and Halifax. The website that was created is hosted on a continuing basis by the Gerontology Research Centre at Simon Fraser University.
• Originally envisioned as a pilot website serving mainly British Columbia, it was broadened to provide a set of Resource Inventories for BC, Edmonton, Toronto, Montreal and Nova Scotia as well as general interest information for LGBT older adults from across the country.

Lay Title: The Challenges of Having End-of-Life Discussions For Lesbian, Gay, Bisexual and Transgender (LGBT) Older Canadians

Key Findings:

• LGBT older adults are likely to grow old without children, without partners, and to live alone; concomitantly, LGBT older adults expressed great concern about “nobody being there” for them at the end of life and feared having “to back into the closet” to get the care they would need.
• Differences exist in the experiences of the subpopulations included under the LGBT umbrella: issues of AIDS were more prominent among older gay men; economic and class issues were noted more frequently by older lesbians; transgender older adults often spoke of the disrespect they received at the hands of health care and social service providers. Even still, the focus groups expressed that aging and death happen to everyone, independent of one’s identified community
• Service providers both understand the issues confronting LGBT older adults and realize that they could do more to make LGBT persons feel welcome in senior service settings

Why was this study needed?

Given the likelihood of aging alone as an LGBT person in a heteronormative and stigmatizing environment, and given the (related) absence of roles and norms for non-family members in end-of-life discussions, LGBT older persons may be less prepared for end of life.  Exacerbating these effects, there is a paucity of publicly available information on LGBT-affirmative social, aging, and health services; i.e., older LGBT persons often do not know to what agencies to turn when assistance is needed.   It is important to learn the barriers and facilitators to end-of-life conversations and access to appropriate services.

Brief overview of the methodology:

• LGBT older adults are more likely to age alone, with limited support, and in a stigmatizing environment leading to poorer overall health and an associated reduced preparedness for end of life.
• Using focus groups and participant surveys, participants were 39 gay men, 28 lesbians, two bisexual cisgender participants, six transgender men and 17 transgender women, at least 50 years of age, English or French-speaking, with some computer familiarity and living with one or more chronic conditions. Additionally, 26 senior service providers were included.
• We conducted 23 focus groups in Vancouver, Edmonton, Toronto, Montreal and Halifax. Town hall meetings were conducted in each of these locations (except Edmonton) for knowledge transfer and community development.
• We created inventories of LGBT-affirmative services and shared at these town hall events and on the website tailored to these unique experiences and needs of LGBT older adults to foster dialog, end-of-life preparation, connecting individuals to appropriate resources, and creating/nurturing community.

Potential impact of findings on clinical practice/patient care and how this impact might be measured:

• Expand awareness of circles of support and potential caregivers to outside of traditional family contexts (e.g., in approach to older LGBT adults, on intake forms, include options to identify non-traditional family members)
• Recognize the stigma LGBT persons have experienced at the hands of social and health services over the course of their lives and the related apprehension they may experience in seeking services
• In clinical settings, ensure that publications and public information is LGBT-inclusive—present images of same-sex couples, for example; ensure that sexual orientation and gender identity are identified in mission statements

Remaining knowledge/research gaps:

• Finding ways to confront the barriers to effective end-of-life communication, and offer opportunities to engage in the same, remains an important gap in our knowledge and practice with LGBT older adults; given the results of this project, particularly the long-term review of the website, it appears that interpersonal (e.g., face-to-face) discussions are the preferred and most effective strategies
• The diversity within the LGBT population is another implicit result of this research; better understanding the unique experiences of lesbians, gay men, and especially bisexual and transgender women and men (homosexual, bisexual, and heterosexual) remains an important knowledge and research gap.

CFN Webinar (September 7, 2016): Raise level, quality of EOL discussion; build community care capacity for LGBT elderly