Changes in Location of Death Across Canada – Research Study Report Donna Wilson - University of Alberta Robin Fainsinger - University of Alberta Corrine Truman - Alberta Health & Wellness Roger Thomas - University of Calgary Kathy Kovacs-Burns - University of Alberta Katharine Froggatt - Lancaster University Christopher Justice - University of Victoria

Introduction In most developed countries, 80-90% of all deaths now are not unexpected. When deaths are expected, planning for the end of life is possible. Hospice or palliative care is also more likely to be the focus of attention, as comfort-oriented (not cure-oriented) care is now widely accepted as the appropriate care modality for irrevocably dying people.

Age at Death In Canada Mean = 74.2 Median = 78 Mode = 82 SD = 17 2% aged 0-22 and 22% aged % aged 87+, with 78% age 65+

Location is Important! The place where end-of-life care occurs is highly significant, as this location influences the manner and type of care. Deaths that take place at home less often involve professionals and life- prolonging technologies as compared to deaths in hospitals or nursing homes. Wilson, D. (1997). A report of an investigation of end- of-life patient care practices in health care facilities, and the influences for those practices. Journal of Palliative Care, 13(4),

Background A previous study of Canadian population mortality data ( ) found: - ongoing increase in hospital deaths from1950 (50.9%) to 1994 (77.3%). - decline in hospital deaths after 1994, with decline beginning in 1980s in rural provinces (notably Saskatchewan). Wilson DM, Northcott HC, Truman CD, Smith SL, Anderson MC, Fainsinger RL & Stingl MJ. (2001). Location of death in Canada. Evaluation & the Health Professions, 24(4),

Deaths in Hospital (%)

Background: Hospitalization Factors The hospitalization trend was found to be due to two key factors: - reduced community-based resources to assist dying persons in the home, and - rising reputation of hospitals for cures and also for excellence in patient care. Wilson, D. M., Smith, S., Anderson, M., Northcott, H., Fainsinger, R., Stingl, M., & Truman, C. D. (2002). Twentieth-century social and health-care influences on location of death in Canada. Canadian Journal of Nursing Research, 34(3),

Second Location of Death Study Aim Examine mortality data for location of death trends or patterns; mainly to determine if the decline in hospital deaths continued after Method Population mortality data purchased again from Statistics Canada (compiled annual death certificate data, with nearly 250,000 decedents each year now).

Second LOD Study Findings 1. Major decline in hospital deaths, from 77.7% in 1994 to 60.6% in Continually lower rate in rural provinces. Hospitalization Rate Rural Provinces Urban Provinces %78.9% %61.0%

Hospital Deaths Declined1994 to 2004 (to 1960 rate of 60.6%)

Two Additional Key Findings 1. Decline was universal across all - genders, ages, marital status, causes of death, and provinces. 2. Those who died out of hospital (10% of death occurred in nursing homes and 30% in homes) were typically: seniors, female, had lived in a rural province, and not married.

Discussion The ongoing decline since 1994 in hospital- based death, dying, and end-of-life care indicates major social, individual, family, health care, and other systemic but largely unnoticed changes have occurred. Clearly, the attractiveness and accessibility of hospitals has declined, with home and community care options increasing.

Implications Decline occurred without any “grand” policies designed to shift death and also EOL care to another location. The responsibility to support dying persons is moving to families and/or home care workers for end-of-life care at home, and in nursing homes or other aged-care facilities where primarily para-professional workers provide care.

Two Key Questions Remain: 1.What is needed to adequate support dying people outside of hospitals? *To prevent a reversal of shift out of hospital (as is occurring England). 2. What is an appropriate ratio for hospital deaths versus other location deaths? *Some deaths will always and should always take place in hospital.

One Certainty - Planning is Needed for Rapid Increase in Deaths Annually

Acknowledgements Canadian Institute for Health Research Five-year Interdisciplinary Capacity Enhancement (ICE) grant funding is gratefully acknowledged for second location of death study and second influences search. PIs: Allison Williams and Donna Wilson. Wilson, D. M., Truman, C., Thomas, R., Fainsinger, R., Kovacs-Burns, K., & Justice, C. (2009). The rapidly changing location of death in Canada, Social Science & Medicine, 68(10), Contact information: