A National Comparison of Intensity of End-of-Life Care in Canada: Defining Changing Patterns, Risk Factors and Targets for Intervention
This project was the first to determine, in detail, our national delivery of end-of-life care.
Research Results
Findings: Among our sample of approximately 1/3 of Canadians, approximately 56% of the population dies in hospital, spends on average 18 days in hospital and 75% see >10 doctors in the last 6 months of life. On their last hospital admission, 26% of patients admitted to an intensive care unit (ICU). These rates have been stable over the past decade. We initiated a standardized survey of the families of all patients dying in one hospital, we found that while nearly three-quarters of inpatients preferred an out-of-hospital death, ICUs were a common, but not preferred, location of death and satisfaction with care was strongly associated with dying in a preferred location.
Impact of findings: Canadians experience predominantly in-hospital and expensive end-of-life care, despite most Canadians preferring out-of hospital options and showing a strong association between location of death and family perception of satisfaction. These findings show a need to expand capacity for end-of-life care settings that match patient preferences and increase national attention to quality.
About the Project
Up to 70% of elderly patients are admitted to hospital and/or intensive care units at the end-of-life; however, when asked, most would prefer a less aggressive treatment plan focusing on providing comfort rather than a technologically supported, institutionalized death. This care that may be unwanted is also expensive.
Previously, there was no provincial or national system of reporting upon how end-of-life care is delivered by our medical system. Therefore our ability to recommend more patient-focused end-of-life care is limited.
Project Team
Principal Investigator:
Robert Fowler, MD, MSc — Sunnybrook Research Institute
Co-Investigators:
Daren Heyland, MD, MSc — Queen’s University/Kingston General Hospital
Jean-François Kozak, PhD — University of British Columbia
Kenneth Rockwood, MD, FRCPC, FRCP — Dalhousie University
Project Contact: Dr. Robert Fowler — rob.fowler@sunnybrook.ca
CORE 2012-12
Key words: elderly; seniors; palliative care; end-of-life; technology; hospitalization; intensive care; health system; knowledge translation; decision-making
Publications
Fowler, R.A., Hammer, M. (June 1, 2013). End-of-Life Care in Canada. Clinical Investigative Medicine. 36(3):E127.
Christian, M.D., Fowler, R., Muller, M.P., Gomersall, C., Sprung, C.L., Hupert, N., Fisman, D., Tillyard, A., Zygun, D., Marshal, J.C. (January 23, 2013). Critical care resource allocation: trying to PREEDICCT outcomes without a crystal ball. PREEDICCT Study Group. Crit Care. 17(1):107.
You, J., Fowler, R.A., Heyland, D.K. (July 15, 2013). Just ask: a guide for conversations about goals of care with seriously ill hospitalized patients. CMAJ.
Dodek, P.M., Wong, H., Heyland, D.K., Cook, D.J., Rocker, G.M., Kutsogiannis, D.J., Dale, C., Fowler, R., Robinson, S., Ayas, N.T., for the Canadian Researchers at the End of Life Network (CARENET). The Relationship between Organizational Culture and Family Satisfaction in Critical Care. (April 2012). Crit Care Med. 2012;40(5):1506-1512.
Presentations
Fowler, R.A. (May 1, 2014). End-of-Life Care from a North American Perspective. University of Edinburgh. Edinburgh, Scotland.
Fowler, R.A. (August 29, 2013). InFACT Session: Investigator-led research: From question to research protocol. World Federation of Societies of Intensive and Critical Care Medicine. Durban, South Africa.
Fowler, R.A. (June 4, 2013). Sedation in the ICU. Sunnybrook Hospital Ross Tilley Burn Centre Day. Toronto, ON.
Sadler, E. (Fowler, R.A.). (May 15, 2013). Family Satisfaction with End-of-Life Care: A Quality Dying Initiative. Sunnybrook Hospital Department of Medicine Research Day. Toronto, ON.
Maraschiello, M. (Fowler, R.A.). (May 15 2013). Physician Order discrepancies During Patient Transfer from the Intensive Care Unit to Medical and Surgical Wards. Sunnybrook Hospital Department of Medicine Research Day. Toronto, ON.
Fowler, R.A. (June 19, 2013). End-of-Life Care in Canada and the United States. University of Toronto Faculty of Medicine. Department of Medicine City-Wide Grand Rounds. Toronto, ON.
Fowler, R.A. (Facilitator). (May 3, 2013). End-of-Life Care Agenda. Ontario Medical Association Annual Council. Hamilton, ON.
Fowler, R.A. (March 27, 2013). End-of-life Care in Ontario. Department of Critical Care Medicine Grand Rounds. Sunnybrook Hospital. Toronto, ON.
Fowler, R.A. (October 30, 2012). When and how patients die in Canada. Critical Care Canada Forum. Toronto, ON.
Fowler, R.A. (October 30, 2012). Does ICU Capacity Influence End of Life Decision-making? Critical Care Canada Forum. Toronto, ON.
Fowler, R.A. (June 15, 2012). US-Canada Comparison of Intensity of Care at the End-of-Life. Commonwealth Fund Harkness International Fellow. New York, USA.
Fowler, R.A. (May 31, 2012). RN-MD Communication. Critical Care Education Day 2012. Sunnybrook Hospital. Toronto, ON.
Fowler, R.A. (May 22, 2012). US-Canada Comparison of Intensity of Care at the End-of-Life. Dartmouth University NIH/NIA Research Group Meeting. Wentworth-by-the-Sea. Hanover, USA.
Hypothesis: Treatment intensity at the end of life is increasing and driven by definable patient and system-level factors that will provide targets for interventions to improve end-of life care and health services planning.
Objectives: (1) To quantify intensity of treatment received during hospital admissions, including receipt of diagnostic and therapeutic procedures for Canadians over age 65 during the last 2 years of life, their location of death, and to assess how this intensity has changed over the last decade. (2) To quantify the contribution of known patient-level, hospital-level, and region-level factors in determining intensity of treatment at the end of life. (3) To identify patient and system factors that will be targets for interventions to improve end-of-life care.
Research Plan: In partnership with the Institute of Clinical Evaluative Sciences in Ontario, and the Canadian Institute for Health Information, that collects health data from each province and territory, our team developed a health care “Atlas” that described interactions with the healthcare system for patients approaching the end of life. For all Canadians who have died in the past decade, we have “looked back” for 2 years prior to death at all admissions to hospital, to intensive care units (ICUs), to diagnostic tests, therapies, the costs of care, and where people die: in hospitals, hospice care or at home.
Key Findings
- The hospital is the most common place where elderly Canadians died. The proportion of people who died in hospital was steady between 2007 and 2012.
- Fewer than half of those who died in a hospital received some form of palliative care.
- It was common for people to use a variety of health care services before death. For example, almost one half of individuals visited a hospital and almost one in five persons were admitted to an intensive care unit within 30 days of their death.
Evidence gap addressed by study/Why this study was needed
- There is little information regarding the types of health care provided to Canadians at or near the end of life. This information would help to better plan and provide health care that meets the needs of dying Canadians and their families.
Suggestions on how these findings could impact older adults living with frailty and/or their family caregivers and how this might be measured
- This study highlights the types of health services that may be needed to improve patient care at or near the end of life. For example, some people prefer to die at home and having other options, like more palliative home care services, may support their wishes.
Brief comment on type of study in lay terms/plain language
- The researchers wanted to learn about the types of health care provided to Canadians at or near the end of life, and to compare these practices across Canada.
- They analyzed information collected about the use of health care for just under 1 million elderly people in Canada (except Quebec) who died between 2007 and 2012.
- The main thing the researchers wanted to understand was how often people died in a hospital and whether this was different across the provinces or over time.
- They also wanted to know about the kinds of health care services people used just before they died, including how often they were admitted to a hospital and an intensive care unit.
Key Findings
- The majority (60%) of elderly Canadians died in a hospital, with rates of in-hospital death remaining stable over time.
- Fewer than half of people who died in hospital received palliative care, with the lowest rates observed among frail individuals and those in more remote areas of the country.
- There is substantial acute care healthcare utilization in the period approaching death. Within the last 30 days of life, one in every two elderly Canadians is admitted to a hospital and 11% are admitted to an intensive care unit.
Evidence gap addressed by study/Why this study was needed
- There is limited national data regarding the types of health care provided to Canadians at or near the end of life.
- The data generated by this study is informative to provincial and national efforts to improve end-of-life care in Canada.
Suggestions on how administrators or policy makers could use the findings (up to 3; brief bullet points)
- A proactive strategy by policy-makers that identifies and addresses barriers to accessing palliative care services is warranted.
- This would include developing the capacity at the provincial and national levels to monitor receipt of palliative care services by eligible Canadians across care settings, including the community and in-patient settings.
Brief comment on type of study in lay terms/plain language
- The study objectives were to understand the types of health care provided to Canadians at or near the end of life, and to compare these practices across Canada.
- Health administrative data from the Canadian Institute for Health Information and Statistics Canada Vital Status registry were analyzed for individuals in Canada (except Quebec) who died between 2007 and 2012. The results presented in this report are restricted to elderly persons (≥ 65 yr at the time of death).
- The main outcome was the proportion of decedents who died in a hospital and whether this was different across the provinces or over time.
- Secondary outcomes included use of acute care services, including the proportion of decedents admitted to a hospital or an intensive care unit in the 6-months and 30-days before death.
Key Findings
- Most (60%) elderly Canadians died in a hospital, with rates of in-hospital death remaining stable over time.
- Overall, less than half of people received palliative care, with the lowest rates observed among frail individuals and those in more remote areas of the country.
- There is substantial acute care based healthcare utilization in the period approaching death. In the last 30 days of life, one in every two elderly Canadians is admitted to a hospital and 11% are admitted to an intensive care unit.
Evidence gap addressed by study/Why this study was needed
- There is limited national data regarding the types of health care provided to Canadians at or near the end of life.
- The data generated by this study is informative to provincial and national efforts to improve end-of-life care in Canada.
Brief overview of the methodology
- This was a retrospective cohort study using linked administrative data sets from Statistics Canada (Vital Statistics registry) and Canadian Institute for Health Information (CIHI).
- The cohort included decedents in Canada (except Quebec) between 2007 and 2012. Decedents were excluded if they could not be linked to CIHI data holdings. The results presented in this report are restricted to elderly persons (≥ 65 yr at the time of death).
- The main outcomes of the study were location of death and healthcare resource use in the 30 days and 6-months before death.
Potential impact of findings on clinical practice/patient care and how this impact might be measured
- These data suggests that there are important educational opportunities to improve access to palliative care services for Canadians.
- The impact of such education initiatives might be measured by developing the capacity at the provincial and national levels to monitor receipt of palliative care services by eligible Canadian across care settings, including the community and in-patient settings.
Remaining knowledge/research gaps
- We have identified important patient- and regional-level differences in the receipt of care at or near the end of life.
- Future studies should examine the drivers for these observations, including the extent to which patient and family preferences and variability in access to palliative care and end-of-life care services influences these patterns.