Summary

As part of a larger study focused on increasing the uptake, impact, and access to advance care planning (ACP) for frail elderly Canadians across multiple care settings, the Diversity Access Team will focus on assessing, tailoring, implementing, and evaluating ACP tools aimed at minority populations. In multicultural countries such as Australia and the United States, emerging research suggests that there are significant disparities in EOL care planning and decision making for ethnic and sexual minorities compared with mainstream populations. 

Work by Principal Investigator Gloria Gutman funded by the BC Ministry of Health with Mandarin-speaking Chinese and Punjabi older adults found that some elderly in these groups are socially isolated, exploited or neglected by their sponsoring children, rendering knowledge about ACP tools and opportunities problematic. Despite the limited uptake of ACP by ethnic minorities, there has been only limited attention given to cross- cultural considerations in ACP and EOL care. 

Team members de Vries and Gutman have also studied EOL planning among lesbian, gay, bisexual, and transgender (LGBT) frail older persons. LGBT older adults are less likely to have partners or children than heterosexuals. In their absence, LGBT older adults are more likely to turn to friends and other non-traditional supporters who often are given little social recognition. In focus groups and Town Hall meetings in Vancouver, Edmonton, Toronto, Montreal and Halifax, LGBT older adults described fears of having to "return to the closet" if they needed to enter LTC or a hospital. They also spoke of ACP tools that do not recognize their unique health and social care needs. The result is that they refrained from completing these ACP tools or engaging in ACP conversations with clinicians. Findings from LGBT groups also have direct relevance for those whose aging experiences lie at the margins of heteronormativity (e.g., non-married, childless, people with diverse family structure). An important aim of this Transformative Grant is to redress the limited attention given to ACP for ethnic or sexual and gender minority (SGM) groups.

Evidence is clear that while many older Canadians view ACP as important, they express discomfort around when and how to engage in pre-emptive end-of-life discussions. As a result, many people are denied opportunities to participate in their own end-of-life planning, resulting in excessive use of invasive medical care at the end of life. 

 

Our work will be guided by the Knowledge-to-Action Framework for Knowledge Translation (KT) to answer the following research questions:

  1. What are stakeholders' (members of Chinese, Punjabi and LGBT populations) perceptions about acceptability, usability, and barriers and facilitators to implementation of ACP tools? (Phase 1)
  2. What is the impact of implementing ACP tools on engagement in ACP, receipt of goal consistent care, satisfaction with end-of-life care, and healthcare resource use (e.g. futile treatments in the last few months of life)? (Phase 2)
  3. What additional refinements are needed to maximize uptake of our suite of ACP tools within the minority populations? (Phase 3) 

 

Investigators:

Gloria Gutman/ Simon Fraser University/ Principle Investigator/

Brian De Vries/Simon Fraser University and Jacqueline Gahagan/Dalhousie University/Co-investigators

 

 

 

 

 

 

 

 

 

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