Improving advance care planning for frail elderly Canadians

Preeminent members of the Canadian health research community and a broad range of community and clinical stakeholders, including patients and families, have deemed that narrowing the gap between the care that patients prefer and what they actually receive is a pressing national priority. Our vision is for frail elderly Canadians to receive person-centered, goal-consistent care as they near the end of life (EOL).

Possible Research Results

Anticipated impact of findings: The experienced team of 32 investigators from 16 universities, five international collaborators, 42 partner organizations and a growing team of patient advisors will focus on increasing uptake, impact and access to Advance Care Planning (ACP) for frail elderly Canadians across the primary care, long-term care (LTC), and hospital settings. This will be achieved by tailoring, implementing, and evaluating a multi-faceted suite of ACP tools in these care settings, while paying particular attention to the needs of marginalized groups (i.e. ethnic and gender minority groups). Our work is guided by the Knowledge-to-Action Framework, with a focus on decreasing patient, family and clinician barriers to ACP so that our tools will be positioned for broad uptake across Canada.

About the Project

Advance care planning (ACP) is a process that supports people in understanding and sharing their personal values, life goals and preferences related to future medical care. The goal of ACP is to prepare people, and their substitute decision-maker(s), for future “in-the-moment” treatment decisions so that people get medical care that is consistent with their values, goals and preferences during serious illness. ACP can improve the patient experience, align treatment with patient preferences, avoid unwanted and costly invasive treatments near EOL and improve psychological outcomes for family members during bereavement.

For this project, our experienced team of 32 clinicians and researchers will focus on increasing uptake, impact and access to ACP for frail elderly Canadians across the primary care, long-term care (LTC) and hospital settings. We will achieve this by tailoring, implementing and evaluating a multi-faceted suite of ACP tools in these care settings, while paying particular attention to the needs of marginalized groups.

For more details on the project rationale, research plan, objectives and deliverables, click here.

Project Team

Principal Investigators:

John You, MD, MSc, FRCPC — McMaster University

Doris Barwich, MD, CCFP — University of British Columbia

Gloria Gutman, PhD, FCAHS, OBC, LLD(Hon.) — Simon Fraser University

Michelle Howard, PhD, MSc — McMaster University

Dev Jayaraman, PhD, FCAHS, OBC, LLD(Hon.) — The Research Institute of the McGill University Health Centre

Sharon Kaasalainen, RN, BScN, MSc, PhD — McMaster University

Daniel Kobewka, MD, MSc — Ottawa Hospital Research Institute

Jessica Simon, MBChB, FRCPC — University of Calgary

Tamara Sussman, MSW, PhD — McGill University

Amy Tan, MD, MSc, CCFP(PC), FCFP — University of Calgary

Robin Urquhart, PhD — Dalhousie University

Co-Investigators:

Julia Abelson, PhD — McMaster University

Peter Allatt, MHSc — Bridgepoint Health

Carrie Bernard, MD — McMaster University

Valérie Bourgeois-Guérin, PhD — Université du Québec à Montréal

Andrew Day, PhD — Queen’s University

Brian de Vries, PhD — Simon Fraser University

Peter Dodek, MD, MHSC — University of British Columbia

James Downar, BHSc, MHSc, MDCM — University of Toronto

Robert Fowler, MDCM — Sunnybrook Research Institute

Paulette Hunter, PhD — University of Saskatchewan

Doug Klein, MD, MSc, BSc, CCFP — University of Alberta

Jennifer Kryworuchko, PhD, RN, CNCC(C) — University of British Columbia

Irene Ma, PhD — University of Calgary

Lynn McCleary, PhD — Brock University

Jeff Myers, MD, MSEd, CCFP — Sunnybrook Hospital

Aman Nijjar, MD — University of British Columbia

Nishan Sharma, PhD — University of Calgary

Taz Sinuff, MD, PhD, FRCPC — Sunnybrook Research Institute

Marissa Slaven, MD — McMaster University

Ravi Taneja, MD, FRCPC — London Health Sciences

Genevieve Thompson, PhD — University of Manitoba

Project Contact: Dr. John You — John.You@thp.ca

TG 2015-03-P

Rationale

Preeminent members of the Canadian health research community and a broad range of community and clinical stakeholders, including patients and families, have deemed that narrowing the gap between the care that patients prefer and what they actually receive is a pressing national priority. Our vision is for frail elderly Canadians to receive person-centered, goal-consistent care as they near the end of life (EOL).

Principal Investigators

John You, MD, MSc, FRCPC — McMaster University

Doris Barwich, MD, CCFP — University of British Columbia

Gloria Gutman, PhD, FCAHS, OBC, LLD(Hon.) — Simon Fraser University

Michelle Howard, PhD, MSc — McMaster University

Dev Jayaraman, PhD, FCAHS, OBC, LLD(Hon.) — The Research Institute of the McGill University Health Centre

Sharon Kaasalainen, RN, BScN, MSc, PhD — McMaster University

Doug Klein, MD, MSc, BSc, CCFP(PC) — University of Alberta

Daniel Kobewka, MD, MSc — Ottawa Hospital Research Institute

Jessica Simon, MBChB, FRCPC — University of Calgary

Tamara Sussman, MSW, PhD — McGill University

Amy Tan, MD, MSc, CCFP(PC), FCFP — University of Calgary

Robin Urquhart, PhD — Dalhousie University

Rationale: As frail elderly patients experience significant loss of capacity in later life, most say that they want treatment aimed at maximizing quality of life rather than prolonging it. However, use of invasive life-sustaining technologies amongst frail elderly Canadians is increasing. Advance care planning (ACP) is a process that supports people in understanding and sharing their personal values, life goals, and preferences related to future medical care. The goal of ACP is to prepare people, and their substitute decision-maker(s), for future “in-the-moment” treatment decisions so that people get medical care that is consistent with their values, goals and preferences during serious illness.

Research Plan: During this three-year project, we will build on current CFN-funded work in ACP and the work of our partners, to refine, adapt and test a multi-faceted suite of tools to support people through the ACP process. These tools address different aspects of ACP: (1) general preparation to do ACP; (2) clarification of values; and (3) supporting clinician communication. In this grant, we will select from this common suite of ACP tools, adapting relevant tools to meet the needs of frail elderly patients and tailoring their implementation to the primary care, long term care and hospital settings. We will use the Knowledge-to-Action Framework to guide this work.

Objectives: (1) We will adapt and pilot test different advance care planning tools to the three different settings (primary care, long term care and hospital) and assess their acceptability and usability from the perspectives of patients, families, clinicians and partner organizations. We will also explore the barriers to and facilitators for, the implementing a multi-faceted suite of ACP tools among frail elderly patients, including marginalized groups of interest (ethnic, and sex and gender minority groups). (2) Through research instruments we will measure the impact of implementing a multi-faceted suite of ACP tools. We will measure how multi-faceted suite of ACP tools influences: patient, family and clinician engagement in ACP, receipt of goal consistent care, satisfaction with EOL care, and healthcare resource use. (3) After evaluating the impact of the multi-faceted suite of ACP tools we will focus on further refinement of knowledge products and ACP tools and disseminating data. Findings from our work with marginalized populations will be integrated into this process of tool refinement and dissemination, with the aim of maximizing uptake of our multi-faceted suite of ACP tools across diverse populations and care settings in Canada

Deliverables: Deliverables from this research will include: (1) multi-faceted bundles of ACP tools tailored to three care settings (primary care, long term care and hospital) and (2) an active Community of Practice focused on increasing the use of the multi-faceted bundles of ACP tools with frail Canadians across the primary care, hospital and long term care settings.

Back to TG 2015-03-P Project Page