The report, End-of-Life Health Care in Ontario, is a first of its kind for the province because it is an exhaustive analysis involving multiple studies. The report addresses specifically, based on the evidence, where the health system must improve to ensure the best end-of-life quality care for Ontarians. It highlights the need for an increased number of health professionals trained in palliative care as well as the need to de-medicalize death and dying in Ontario by encouraging productive, informed conversations about end-of-life care between patients, their loved ones, and their care providers.
The HQO report also calls for improvements to care for all people nearing the end of their lives or within their last year of life, irrespective of the underlying disease. While Canada currently ranks relatively high on an international index measuring “quality of death,” there are still hundreds of thousands of Canadians without access to coordinated end-of-life care.i In fact, it is estimated that just 30 percent of people with chronic illnesses have access to team-based palliative care – most being people with cancer.ii
End-of-life care will become an increasingly pertinent issue. By 2026, due to an aging population, the number of Canadians dying each year will increase by 40 percent to 330,000 people. Each of these deaths will affect the well-being of an average of five other people – families and loved ones – or in excess of 1.6 million.iii
The social and economic impact of these deaths will place immense pressure on individuals, their families, and the health system. It will also reinforce the need for a more patient-engaged approach to end-of-life care, including training professionals to discuss with patients the factors that determine whether they will be able to die at home, to encourage patients to plan their care with their loved ones, and to ensure that a patient’s illness, values and treatment goals inform the kind of care delivered to them when death is near.
“Patient choice and preferences are essential to the delivery of high quality care,” says Dr. Joshua Tepper, the President and CEO of Health Quality Ontario and a family physician who treats patients at all stages, including as they near the end of their lives. “In order to guarantee the best care for patients, it is necessary to recognize that death is an intensely personal experience which must be guided through discussions in advance with medical professionals and loved ones.”
End-of-Life Health Care in Ontario includes in its background materials a survey demonstrating that 70 percent of hospitalized Canadian elderly patients wanted comfort measures as opposed to life-prolonging treatment. However, more than half of these patients were admitted to intensive care units.iv
The report is also accompanied by recommendations from HQO’s Ontario Health Technology Advisory Committee (OHTAC). Since 2003, OHTAC has been analyzing existing clinical data and making evidence-based recommendations on how to improve health interventions for Ontarians. The report is an addition to important work conducted by Cancer Care Ontario, the Local Health Integration Networks, the Registered Nurses’ Association of Ontario, the Ontario Medical Association, and others.v
“The impact of high quality care at the end-of-life is enormous – for patients, families, and the health care system,” says Dr. Robert Fowler, an internationally renowned researcher, physician at Sunnybrook Health Sciences Centre in Toronto, and Co-Chair of HQO’s End-of-Life expert panel. “The availability and quality of end-of-life care services has become an immediate care concern and one that we must focus on improving.”
Key highlights in the report include:
- Deciding Where to Die; Home or Hospital? Certain places of death may be more appropriate or desirable for those at the end of their lives. For example, one Ontario-based study of 214 home care recipients showed that 63 percent of patients and 88 percent of caregivers preferred a home death. The analysis identifies specific factors that can help predict the feasibility of achieving a patient’s preferred place of death. This list can be used to inform discussions among patients, informal caregivers, and health care providers on the best possible option given individual circumstances, and help to match preferences with end-of-life care delivery.
- Discussing Care Planning: Research suggests that patient care planning discussions, which include the desired direction of a patient’s care and advance care planning, are associated with improved quality of care and patient and family satisfaction. However, a multi-centered study completed in five Canadian tertiary care hospitals reported that fewer than one in five people had these discussions with their health care provider. Those who discussed care planning had higher overall satisfaction, and satisfaction with communication and decision-making, compared to those that did not.
- Building Consistent Team-Based Models of Care: The delivery of health care to people as they near the end of their lives is particularly important, especially with regard to quality of life. Many people need a range of services to help manage symptoms and support physical, emotional, and spiritual needs. Because of the extensive array of care required, consistency of care (that is, having a coordinated team to deliver end-of-life care services) is generally accepted as the optimal care model.
- Understanding Cardiopulmonary Resuscitation (CPR): Understanding the impact of CPR on patients at the end-of-life is important, as some may prefer to not undergo this intervention if they are provided with accurate information on their quality of life after receiving it. A Canadian study showed that seriously ill hospitalized patients have poor knowledge about CPR, low rates of survival, and, quite often, very poor perceived quality of life in the event of successful resuscitation.vi Proactive discussions about a patient’s goals of care should inform health interventions at the end-of-life.
- De-medicalizing death and dying: The report also provides evidence to support the need for a broader public discussion about the normalization and de-medicalization of death and dying. Fifty-five percent of Canadian adults have never had a discussion about their end-of-life care preferences with either a family member, friend, doctor, lawyer, or financial advisor, states an online national survey carried out by Harris/Decima in 2013.vii Most attributed initial reluctance to discussing end-of-life care to not wanting to upset family members (76 percent) and not knowing enough about their options (70 percent).
“It is our hope that a report like this will fuel a broader discussion of death as an important part of everyone’s life cycle,” says Shirlee Sharkey, Chair of the Ontario Health Technology Advisory Committee, Co-Chair of the HQO End-of-Life mega-analysis expert panel, and CEO of Saint Elizabeth Healthcare.
i Fowler R, Hammer M. End-of-life care in Canada. Clin Invest Med. 2013; 36(3):E127-E132. [online] Available at: http://www.cahs-acss.ca/wp-content/uploads/2013/08/End-of-Life-Care-in-Canada.pdf
ii Local Health Integration Networks, Quality Hospice Palliative Care Coalition of Ontario. Advancing high quality, high value palliative care in Ontario: a declaration of partnership and commitment to action [Internet]. [updated 2011]
iii Quality End-of-Life Coalition of Canada. Blueprint for action 2010 to 2020. 2010, p. 19
iv Fowler R, Hammer M. End-of-life care in Canada. Clin Invest Med. 2013; 36(3):E127-E132.
v Cancer Care Ontario, (2009). Regional Models of Care for Palliative Cancer Care: Recommendations for the Organization and Delivery of Palliative Cancer Care in Ontario. [online] Available at: https://www.cancercare.on.ca/common/pages/UserFile.aspx?fileId=77326.
Local Health Integration Networks and Quality Hospice Palliative Care Coalition of Ontario, (2011).Advancing High Quality, High Value Palliative Care in Ontario. [online] Available at:http://southeastlhin.on.ca/~/media/sites/se/UploadedFiles/Hospice%20Palliative%20Care%20Network/palliative%20care_report.pdf.
Registered Nurses’ Association of Ontario. (2011). End-of-life Care During the Last Days and Hours.Toronto, ON: Registered Nurses’ Association of Ontario. [online] Available at:http://rnao.ca/sites/rnao-ca/files/End-of-Life_Care_During_the_Last_Days_and_Hours_0.pdf.
Ontario Medical Association, (2014). Ontario’s Doctors Launch End of Life Care Plan. [online] Available at: https://www.oma.org/Mediaroom/PressReleases/Pages/EndofLifeCarePlan.aspx.
vi Heyland DK, Frank C, Groll D, Pichora D, Dodek P, Rocker G et al. Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members. Chest. 2006; 130(2):419-28.
vii Canadian Hospice Palliative Care Association (CHPCA). What Canadians say: the way forward survey report. 2013 Dec. 74 p. Available from:http://hpcintegration.ca/media/51032/The%20Way%20Forward%20-%20What%20Canadians%20Say%20%20Survey%20Report%20Final%20Dec%202013.pdf