Grant: Project Grant

Dying is something that will happen to everyone and good quality of care at the end of life is often considered a basic human right. As people get older, and with more seniors living with some illnesses for a long time (like heart disease), there will be an increased need for palliative care (PC) for those who are seriously ill and dying. There has been more money spent on PC services recently, but we really do not know much about the quality of care that people get. Much of the research in PC looks at how many people went to the hospital or where they died, but doesn't look at issues like pain, shortness of breath and depression that we know are important to the person and their family. Across Canada we have data from 5 provinces and the Yukon Territory (roughly 3.7 million records) that can help us examine the quality of PC services. The data come from a survey that is completed when people are receiving home care. This survey includes important questions about a person's pain, depression, whether they are having trouble breathing and whether they can take care of their basic needs (e.g., getting dressed, and if they have someone to help them). From the survey questions we have created a set of quality indicators that look at things like pain, trouble breathing, depression, caregiver distress and falls. These indicators are reported as a percent (e.g., the percent of people with severe pain) so we can compare different health care providers from across Canada on these measures. However, before these indicators can be used to compare different groups, they need some further testing. In this project, we will work with researchers, home care clinicians and decision makers to test these indicators to ensure that they work well and are doing a good job of assessing the quality of care.