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The End-of-Life Research Landscape

Cardus aims to build on the good work done by parliamentarians and the hundreds of organizations working in the complex field of health and end-of-life care. Below are links to resources upon which we rely heavily in our recommendations.

"Not to be Forgotten: Care of Vulnerable Canadians"

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In November of 2011, this report was compiled by an ad hoc Parliamentary Committee on Palliative and Compassionate Care co-chaired by three members of parliament from each major party: Harold Albrecht (Conservative), Joseph Comartin (NDP), and Frank Valeriote (Liberal). The report was designed to bring current problems facing end-of-life care to public attention, and inform new policy proposals. As such, the report provides a survey of senior care and other issues facing seniors, but highlighted the growing problems with end-of-life care in Canada as the baby-boom generation aged. The report gathered testimonies from hundreds of roundtable participants and the most recent data on the healthcare landscape to create a list of recommendations targeting the various levels of government. The overall thrust of the report was to move from a medical model of health to an integrated community model, which would see other palliative institutions (like hospices and homecare) thrive in order to relieve acute care facilities.

Ministry of Health and Long-Term Care: Palliative Care Report (Ontario only)

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This 2014 Auditor General's report put out by the Ministry of Health and Long-Term Care provides an up-to-date view on the state of end-of-life care in the province of Ontario. The report's mandate was to assess whether the Ministry and the Local Health Integration Networks were able to ensure Canadians had "timely and equitable access to cost-effective palliative-care services that meet their needs" as laid out in 2012 Action Plan for Health Care in Ontario. Included in this report is a helpful analysis of a patient's trajectory at the end of life that explains when the shift between curative and palliative care takes place, and how palliative care extends beyond a patient's death into a period of bereavement. In addition, this report includes a breakdown of palliative care costs and makes a convincing case that palliative care outside the hospital will greatly reduce costs.

"Bringing Care Home" (Ontario only)

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This 2015 report from the Expert Group on Home and Community Care is Ontario-based, yet provides recommendations and insights that are applicable across Canada. This report makes the case that patients and their natural care providers must be seen at the center of end-of-life care discussions, and that the best place for a Canadian to die is in their home. After detailing the current homecare landscape in Ontario, the committee gives recommendations for improving home and community care by arguing for more consistent coordination between institutions, a more reliable source of funding, and improved accessibility across regions. In addition, this report makes several suggestions about how Ontario can better support natural caregivers in their work and increase the educational resources such caregivers need. The strength of this study is in the thoroughness of its research alongside its ability to get ground-level anecdotes of what is occurring. The "pockets of excellence" in home and community care that exist throughout the province are positive signs that innovative approaches are already happening and may be used throughout Ontario, and the rest of the country.

"Health Care in Canada: A Focus on Seniors and Aging"

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This 2011 report was issued by the Canadian Institute for Health Information (CIHI). This report provides a specific look at how seniors are currently using health care throughout Canada and frames the discussion around whether or not the current patterns of usage will be sustainable as the baby-boomers age and die. The report provides data on the current demographic shift taking place in the senior population, then focuses upon the past 10 years of spending and how a disproportionate amount of that spending has been for Canadians aged 65 and older. The report then surveys the landscape of end-of-life care providers and provides an important look at some of the problems-bed blocking, decreased health, increasing cost, increasing wait times-of hospital-based palliative care. As in other reports, this CIHI study also suggests that new ways need to be found to help seniors more easily die in their place of preference.

"Fact Sheet: Hospice Palliative Care in Canada"

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Updated in 2014, this "fact sheet" put out by the Canadian Hospice Palliative Care Association (CHPCA) provides an up-to-date scan of the important data around hospice care in Canada. The fact sheet is a compendium of multiple reports and polls, but provides the necessary details to construct the narrative that while demand for hospice care is on the rise, access and availability are not consistent throughout the various regions of Canada (particularly in rural areas). The report indicates that better awareness, more stable funding, and better advance-care planning are needed to improve the current state of hospice care in Canada. Again, this report provides nothing new, but is a helpful summary and guide to the numerous reports on palliative care available.

"Blueprint for Action: 2010 to 2020"

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This 2010 document from the Quality End-of-Life Care Coalition of Canada (QELCCC) is less focused upon research than it is upon recommendations. This organization particularly looks at how end-of-life care in Canada could improve over the next ten years by increasing accessibility, availability, awareness, advance care planning, and supports for natural caregivers. Although written almost five years ago, many of the recommendations still need to be developed and promoted across Canada.

"Death, Dying, and Canadian Families"

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This 2013 report from the Vanier Institute was written by Dr. Katherine Arnup in order to highlight the changing experience of death and dying in Canada in the past century. The report indicates that a drastic shift occurred in the 1950s which saw a great increase in the medicalization of death and a great reduction in community-based care. Dr. Arnup provides a long list of the hopes and beliefs that many Canadians have about death, and then shows how most of them are not met out in reality. One unique feature of this report is the special attention it pays to the Aboriginal community, and how the rising medicalization of death greatly challenges the traditions and community-values many of them hold dear. In conclusion, this report again provides specific recommendations for improving the landscape of end-of-life care across the range of institutions-homecare, hospices, and long-term care facilities-in order to move away from a medical-model to a more patient and community-centered approach to death and dying.

Further Resources

Title Lead Author Publisher Year  
"Palliative medicine and the medicalization of death" David Field European Journal of Cancer Care 1994
"Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly" Marcus J. Hollander Healthcare Quarterly 2009
"Compassionate Care Policy"   Human Resources Professionals Association 2014
"Not to be Forgotten: Re-Writing the Disability Chapter in Canada: A Functional, Forward-Looking Approach" Joe Comartin, M.P. Parliamentary Committee on Palliative and Compassionate Care 2015
"Formal and Informal Care for Older Persons: Assessing the Balance in Ontario" A. Paul Williams Balance of Care Research Group 2010
"Advancing High Quality, High Value Palliative Care in Ontario: A Declaration of Partnership and Commitment to Action"   Quality Hospice Palliative Care Coalition of Ontario 2011
"Seniors and Alternate Level of Care: Building on Our Knowledge"   Canadian Institute for Health Information 2012
"Of Life and Death - Final Report" Special Senate Committee on Euthanasia and Assisted Suicide 1995
"What Canadians Say: The Way Forward Survey Report" HarrisDecima Canadian Hospice Palliative Care Association 2013
"Health Care in Canada 2011: Report on Seniors and Aging" Canadian Institute for Health Information 2011
"Medical Ethics and Economic Medicalization" Geoffrey Poitras Contemporary Issues in Bioethics 2009
"The Preferred Place of Last Days: Results of a Representative Population-Based Public Survey" Donna M. wilson Journal of Palliative Medicine 2013
"Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning" Daren K. Heyland JAMA Intern Med 2013
"Providers' perceptions of Aboriginal palliative care in British Columbia's rural interior" Heather Castleden Health & Social Care in the Community 2010
"Research Synthesis on Cost Drivers in the Health Sector and Proposed Policy Options" Alexandra Constant Canadian Health Services Research Foundation 2011
"Cost-Effectiveness of Palliative Care: A Review of the Literature" Corinne Hodgson Canadian Hospice Palliative Care Association 2012
"Why Canada needs more palliative care" Derek Miedema Institute of Marriage and Family Canada 2013
"Costs associated with resource utilization during the palliative phase of care: A Canadian Perspective" Serge Dumont Palliative Medicine 2009
"Home and Community Care in Canada: An economic footprint" Greg Hermus Conference Board of Canada 2012
"The Palliative Approach: Improving Care for Canadians with Life-Limiting Illnesses?" Jean Bacon Canadian Hospice Palliative Care Association 2012
"Close to Home: A Strategy for Long-Term Care and Community Support Services" Susan Sullivan Government of Newfoundland & Labrador 2012

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