Diversity Access Team

COVID-19 experiences and Advance Care Planning (ACP) among Older Canadians: influence of age, gender and sexual orientation

Research:

Canada is a multi-cultural country. Culture has an impact on patients’ and families’ perspective on health, dying and death, communication patterns, appropriate interventions, and the role of others (and who they might be) in late life problem solving and decision making relating to care. The DAT aims to address low completion rates of advance care directives and other ACP documents and EOL care preference discussions by:
exploring the level of ACP knowledge and readiness in our target populations (benefits, challenges, scope; their concerns related to EOL planning).
Increasing cultural relevance of approaches and tools supporting ACP – specifically, workbooks that offer information about ACP, and prompt users to initiate an ACP process, which includes thinking about their values and preferences for EOL care, choosing a decision maker, and communicating these preferences to a selected person

The Diversity Access Team (DAT) is exploring challenges related to participating in advance care planning (ACP) among members of the LGBT community and some ethnic groups.
Focus groups and education sessions were held with community-based adults age 55+ and with care facility residents, staff, and families in BC, QU, and NS. Participants were introduced to ACP tools and asked to provide feedback on their relevance for their minority group. We also interviewed primary care physicians and hospitalists having 15% or more of the patients in their practice being older adults from South Asian, Chinese, and/or LGBT populations.

Key findings:

Action is needed to mobilize marginalized groups and ethnic minorities to complete ACP documents and engage in goals of care conversations with appropriate others. The first step is basic education about what ACP is and is not. Based on our focus groups, it is clear that the topic of ACP is not well understood by members of the South Asian community, and is a taboo topic for many in the Chinese community.

Recommendations:

Primary Care Sector:

  • A series of ZOOM/town hall meetings to spread the concept, using words and images that resonate with the particular community targeted
  • Distribute workbooks free of charge

Long Term Care Sector:

  • A series of public meetings directed to residents and families identifying who in the care home they should talk to about ACP
  • A series of training sessions for staff to improve their understanding of cultural prohibitions, language, religion of the major ethnic minority groups in their facility and understanding the relationship differences in the LGBT community e.g. families of choice.
  • Greater responsiveness to where, when and how ACP, including document completion, takes place with more inclusive language and presentation

Hospital Sector:

  • A CME series to improve hospitalists’ understanding of cultural prohibitions, language, religion of the major ethnic minority groups in their catchment area and understanding the relationship differences in the LGBT community e.g., families of choice.

Publications:

Beringer, R., Gutman, G., and de Vries, B. (2021). Exploring and promoting advance care planning among Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ) older adults living in non-metropolitan British Columbia. Journal of Gay and Lesbian Social Services. Published online Feb 16, 2021

Howard M, Elston D, De Vries B, Kaasalainen S, Gutman G, Swinton M, Carter R, Sussman T, Barwich D, Urquhart R, Jayaraman D, Munene P, You J. (2020). Implementing Advance Care Planning Tools in Practice: A Modified World Café to Elicit Barriers and Recommendations from Potential Adopters. Accepted for publication by Healthcare Quarterly, Dec 2020.

Dube D, Sussman T, Brotman S, de Vries B, Gutman G. Advance Care Planning among Older Gay Men Living with HIV in Montreal, Canada: Challenges to Thinking and Talking about Future Care. J Homosex. 2021 Jan 12:1-17.

Beringer R, Gutman G, and de Vries, B. Exploring and promoting advancing advance care planning among Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ) older adults living in non-metropolitan British Columbia. Accepted for Publication by the Journal of Gay and Lesbian Social Services.

Principal Investigator:

Gloria GutmanGloria Gutman, PhD, FCAHS, C.M., O.B.C., LLD(Hon.)

Simon Fraser University

Gloria Gutman is Professor Emerita in the Gerontology Department and a Research Associate in the Gerontology Research Centre at Simon Fraser University (SFU), having founded and directed both from 1982 to 2005. Dr. Gutman is a past president of the International Association of Gerontology and Geriatrics (IAGG) and the International Network for Prevention of Elder Abuse (INPEA). She is currently the President of the North American chapter of the International Society for Gerontechnology (ISG) and has a distinguished international record of academic and advisory service. Dr. Gutman completed her undergraduate degree and doctorate at the University of British Columbia and her masters at the University of Alberta.  Her research interests are wide-ranging; including seniors’ housing, long term care, health promotion, dementia care, environmental design of age-friendly hospitals and cities, and seniors emergency preparedness.

Co-Investigators:

Dr. Brian DeVries, PhD
Dr. Jacqueline Gahagan, PhD

Research Staff:

Ms. Shimae Soheilipour, Research Coordinator, DDS, PhD
Dr. Robert Beringer, Research Assistant, PhD
Mr. Brock Nicholson, Research Assistant
Ms. Helen Kwan, Research Assistant
Ms. Taranjot Kaur, Research Assistant
Ms. Avantika Vashisht, Research Assistant
Ms. Katrina Jang, Research Assistant