improving DECIsion-making about goals of care for hospitalized, elDerly patiEnts: a “multi-incubator unit” study (iDECIDE)
The overall objective of our program of research is to improve end-of-life (EOL) communication and decision-making for seriously ill, hospitalized elderly patients. By improving communication and decision-making near or at the EOL, we have the opportunity to dramatically improve the patients’ and families’ experience as they journey through the final days, improve the work experience for health care professionals, and avoid unwanted aggressive medical care at the EOL.
Possible Research Results
Anticipated findings: The primary aim of this incubator unit project is to assess the feasibility of tools aimed at improving communication and decision-making. For each tool, we will report the proportion of eligible patients who agree to participate in our study as a measure of the feasibility of recruitment. We will report participant and clinician ratings of sensibility, acceptability/burden and satisfaction, using both quantitative (mean response scores) and qualitative (interview) methods.
Impact of findings: In the absence of meaningful EOL communication between physicians and patients, high intensity life support is often provided by default. Mounting evidence suggests that the unwanted use of technology at the EOL is associated with negative outcomes, including poorer quality of life for patients in the terminal phase of illness, low satisfaction with EOL care, and high levels of anxiety and depression in family members of these patients. Moreover, data indicate that many seriously ill patients receive care that is inconsistent with their wishes and that such discord is associated with greater healthcare expenditures.
About the Project
In our previous CIHR and partner-funded research, we identified key barriers to EOL communication and decision-making. Informed by this work, we have assembled a multifaceted bundle of interventions that aims to reduce these barriers: (1) a suite of web- and video-based decision support tools to prepare patients and families to make decisions about their care near EOL and (2) program aimed at assisting clinicians with communicating with patients about values and treatment preferences near EOL (the Serious Illness Care Program).
The objective of this study is to engage three ‘incubator units’ across Canada (Ward of the 21st Century in Calgary, Hamilton Health Sciences and McGill University Health Centre) to pilot test and refine the tools in this bundle before moving to wide scale implementation and evaluation of these knowledge products.
For more details on the project rationale, hypothesis, objectives and research plan, click here.
Project Team
Principal Investigators:
John You, MD, MSc, FRCPC — McMaster University
Daren Heyland, MD, MSc, FRCPC — Queen’s University/Kingston General Hospital
Dev Jayaraman, MD, MPH — The Research Institute of the McGill University Health Centre
Jessica Simon, MBChB, FRCPC — University of Calgary
Co-Investigators:
Andrew Day, MSc — Clinical Evaluation Research Unit, Kingston General Hospital
Peter Dodek, MD, MHSc — University of British Columbia
Robert Fowler, MDCM, MSc — Sunnybrook Health Sciences Centre/University of Toronto
Andrea Frolic, PhD — Hamilton Health Sciences
Jeff Myers, MD, MSEd — Sunnybrook Health Sciences Centre/University of Toronto
Nishan Sharma, MD, PhD — University of Calgary
Tasnim Sinuff, MD, PhD — Sunnybrook Health Sciences Centre/University of Toronto
Rebecca Sudore, MD — University of California
Project Contact: Dr. John You — John.You@thp.ca
CORE 2013-30
Key words: end-of-life care; shared decision-making; hospitals; feasibility studies; integrated knowledge translation
The overall objective of our program of research is to improve end-of-life (EOL) communication and decision-making for seriously ill, hospitalized elderly patients. By improving communication and decision-making near or at the EOL, we have the opportunity to dramatically improve the patients’ and families’ experience as they journey through the final days, improve the work experience for health care professionals, and avoid unwanted aggressive medical care at the EOL.
Principal Investigators
John You, MD, MSc, FRCPC — McMaster University
Daren Heyland, MD, MSc, FRCPC — Queen’s University/Kingston General Hospital
Dev Jayaraman, MD, MPH — The Research Institute of the McGill University Health Centre
Jessica Simon, MBChB, FRCPC — University of Calgary
Rationale: Mounting evidence suggests that the unwanted use of technology at the EOL is associated with negative outcomes, including poorer quality of life for frail patients in the terminal phase of illness, low satisfaction with EOL care, and high levels of anxiety and depression in family members of these patients.
Hypothesis: New tools that improve EOL communication and decision-making are likely to lead to improvements in the quality of EOL care.
Objectives: To evaluate the feasibility of different components of an innovative, multifaceted, decision support intervention for frail elderly, hospitalized patients, their family members and their health care providers.
Research plan: Our work will be carried out in 3 “incubator units” across Canada: the Ward of the 21st Century in Calgary, Hamilton Health Sciences and McGill University Health Centre. These incubator units will provide a setting where research end-users can conduct controlled setting ‘beta-tests’ of tools, adjusting knowledge products and tools for maximum benefit before further dissemination.