Laurier researcher heading national effort to evaluate palliative home care
Governments are increasingly funding community-based care for people who are seriously ill or in palliative care but it is difficult for families and even doctors to find information about the quality of that care. Wilfrid Laurier University Professor Dawn Guthrie is leading a national effort to change that.
Guthrie received a $336,600 grant from the Canadian Institutes of Health Research (CIHR) to lead a project to develop and test quality indicators for the home care of seriously ill and palliative patients. The project involves collaborators from universities, health-care organizations and governments from across Canada, as well as international scholars.
“Dying is something that will happen to everyone, and good quality of care at the end of life is a basic human right,” said Guthrie, a member of Laurier’s departments of Kinesiology and Physical Education and Health Sciences. “We know a little about what’s happening in terms of the quality of palliative care in hospital. We know almost nothing about what happens in the community, which by and large is where people want to be.”
Guthrie and master’s student Lisa Harman already completed a project to develop quality indicators for palliative home care in Ontario. That project took a year; the national-level one, which builds upon it, will take three years. Both projects draw on existing data.
“We have all kinds of electronic health information, millions of assessments across the country,” said Guthrie. “Now what we need is expert input into what’s important to measure and capture.”
Guthrie and her colleagues are setting up a series of expert panels including clinicians, researchers, health care administrators, patients and families. These participants will help narrow down which indicators are most helpful in understanding the quality of care patients receive.
Indicators may include physical ones, such as the prevalence of pressure ulcers (bedsores), severe pain and falls; emotional ones such as depression and loneliness; and social ones, such as participation in social activities and caregiver distress.
The next step in the project will be to examine the existing data to determine if the suggested indicators can in fact be effectively measured and compared across the country. The ultimate goal is to develop a standardized set of quality indicators that can be reported as percentages – i.e., percent of people with unrelieved pain.
“By looking at these indicators, palliative care providers can see how they are doing and how they compare to other places. In this way, they can figure out where they might need to make some changes in order to improve the quality of care that they provide,” said Guthrie.
Guthrie cautions that the numbers may not always reflect quality of care – for instance, a high rate of shortness of breath may indicate a large number of patients with respiratory disease rather than low-quality care. However, the indicators are meant to reflect issues meriting further investigation.
Since a standardized assessment instrument developed by interRAI, an international consortium promoting high-quality health care, is widely used in Canada, organizations such as Ontario’s Local Health Integration Networks (LHINs) will be able to use software to keep track of comparative numbers once quality indicators are developed. Guthrie is an interRAI research fellow.
“I think the research can help improve the quality of care for everybody,” said Guthrie. “Currently in our health care system, we don’t have all the money to do everything we might want to do, so how do we do a really good job with what we have? How do we keep improving? Part of it is measuring what we’re doing and using data to help inform practices.”