Influences for the Shift of End-of-life Care out of Canadian Hospitals Donna Wilson - University of Alberta Roger Thomas - University of Calgary Robin Fainsinger – University of Alberta Corrine Truman -Alberta Health & Wellness Kathy Kovacs-Burns - University of Alberta Steve Birch – McMaster University Rod MacLeod – Auckland University

Introduction Most people who die each year in Canada now (78%) are older persons (age 65+). Deaths increasingly can be anticipated. Expected deaths allow planning for the end of life, with home deaths often desired now; particularly among select groups of people – such as those who are dying after cancer treatments have been unsuccessful, and rural people who want more “natural” deaths.

Location is Important! The place where end-of-life care is provided is a major influence on the type and manner of care provided near death; all other aspects of death and dying are also affected by the location. Timely and effective care is extremely important, as dying persons often experience changes in their health as death nears, accompanied by rapid changes in their care needs.

First Study on Location of Death Canadian mortality data (1950+) showed: - 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 (%)

Hospitalization of Death Influences Hospitalization trend 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 Location 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 Declined Substantially (to 1960 level of 60.6%)

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

Influences for Shift OUT of Hospital Synthesis research involving published Canadian information for influences contributing to the decline in hospital deaths. Synthesis research is a systematic and thorough search for and analysis of information, with separate findings grouped or synthesized into a whole.

Information Sources n Canadian Bar Review n Canadian federal and provincial government policy documents n Canadian Institute for Health Information reports n Canadian Issues n Canadian Journal of Administrative Sciences n Canadian Journal of Behavioural Science n Canadian Journal of Economics n Canadian Journal of Geriatrics n Canadian Journal of Law & Society n Canadian Journal of Nursing Leadership (formerly Administration) n Canadian Journal of Nursing Research n Canadian Journal of Philosophy n Canadian Journal of Policy Research (ISUMA) n Canadian Journal of Political Science n Canadian Journal of Public Health n Canadian Journal of Sociology n Canadian Journal on Aging n Canadian Medical Association Journal n Canadian Nurse Journal n Canadian Psychology n Canadian Public Policy n E-journals (BMC Palliative Care) n Journal of Aging Studies n Journal of Palliative Care n Journal of Palliative Medicine n Journals of Gerontology A: Biomedical Sciences/Medical Sciences n Journals of Gerontology B: Psychology and Social Sciences n McLean’s Magazine n Palliative Medicine

Influences for Shift OUT of Hospital 1. The Canadian healthcare system changed substantially over this time period. n (a) Hospital downsizing in the mid-1990s resulted in hospital beds becoming much less available. n (b) Hospitals also became less desirable as a place of care, through concerns raised about contracting SARS and iatrogenic superbugs, and experiencing adverse events in hospital; with nursing shortages and other health system issues contributed to long emergency room waits and long waits for tests and treatments; and with public confidence in hospitals and physicians declining. n (c) Home care services and other community-based services increased in keeping with “aging in place” with more home-based seniors’ care and also palliative or end-of-life care increasingly provided in the home. n (d) Nursing homes increasingly had to provide more on-site care to ill residents, including end-of-life care, instead of transferring them to hospital when dying.

Influences for Shift OUT of Hospital 2. Palliative and end-of-life care advanced in organization, theory, and across both specialized and general practice; while also expanding across care settings. n (a) Palliative care became a distinct speciality, raising awareness of inevitable deaths and need for palliative care among health care professionals, and making the care of dying persons more acceptable to provide as it became less a mistake or failure in curative care. n (b) Palliative care and other research brought advancements in care, including evidence-based pain management and other more effective end-of-life care measures that could often be used in any care setting. n (c) Palliative care services expanded out of hospitals. n (d) Palliative care and other relevant end-of-life care knowledge becoming widely available through the Internet. This information contributed to more openness about death and dying, as well as increased comfort in attempting home or nursing home-based care. n (e) Palliative and end-of-life organizations developed and advanced.

Influences for Shift OUT of Hospital 3. Individuals, families, and Canadian society began to more openly recognize inevitable deaths, and the need for a unique type of care or support to be provided near the end of life to enable “good” deaths. n (a) Death began to be increasingly understood as an inevitable or natural end to long life, with population aging widely. n (b) Death also increasingly began to be openly understood as an inevitable end to progressive chronic or incurable illnesses. n (c) Less fear of death and dying became evident; with this reduction in fear in keeping with pain management and other advances, increased availability of information through the Internet, and other reasons. n (d) Cultural and individual diversity increased, with more acceptance of “patient-specific” care and also avoidance of hospitals. n (e) Desire for “natural” death, with home deaths increasingly and openly planned for, as well as attempted if not achieved. n (e) Governments enacted or amended legislation to support home deaths, notably the federal Compassionate Care Benefit.

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 hospital care has declined, with home and community care options increasing.

Concerns Exist… Decline occurred without “grand” policies to shift death to another location. Obviously, the responsibility to support dying persons is moving in large measure to families and/or home care providers to provide end-of-life care at home, and to nursing homes or other aged-care facilities with primarily unprofessional workers providing care.

Two Key Questions Remain: 1.What is needed to adequate support dying people outside of hospitals? As family caregivers are critical to home-based deaths, as are para- professionals there and in nursing homes. 2. What is an appropriate ratio for hospital deaths? As some deaths will always and should always take place in hospital.

One Certainty - Planning is Needed for a Doubling Number of Deaths 1/products/analytic/cda01pymd.swf

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 Contact info: