Dying is not a subject many of us like to talk about. However, all of us, as well as our loved ones, will die eventually, and before that happens, many of us will need palliative care. Laurier Professor Dawn Guthrie and master’s student Lisa Harman want to help ensure that when the time comes, we receive the best care possible, whether we choose to die at home or if it happens somewhere else.
“In general, I don’t think people know much about the home care system,” says Guthrie, who is part of Laurier’s departments of Kinesiology and Physical Education and Health Sciences. “We spent about $1 billion on home care in Ontario last year and the amount is growing and yet we don’t know very much about the people receiving home care or how the system is functioning.”
Guthrie and Harman are analyzing a massive database of home care assessments in Ontario – more than a million assessments collected by home care workers, representing about half a million unique people, says Guthrie.
For her nearly finished Kinesiology master’s thesis, Harman concentrated on home care assessments for people who were seriously ill. Her objective was to come up with indicators of home care quality that can be standardized and used across the province.
It’s an under-researched field, says Guthrie. “Lisa’s thesis is one of only a few papers to actually look at the quality of palliative care in the community.”
Harman says it has been “great” to work with Guthrie. “She tries to do everything she could possibly do for her students. Every opportunity she could give you, she will. She’s very involved with your work and you’re very involved with her work.”
Harman came up with her quality indicators both by analyzing the home care assessments and by interviewing the physicians, nurses, nurse practitioners and palliative care coordinators who provide home care in the community.
Some of Harman’s quality indicators that focus on physical issues include the rate of falling, daily pain, and shortness of breath.
However, psychosocial indicators are also important, say Harman and Guthrie. One key aspect of home care is that it requires significant involvement by the patient’s family. That’s why another of Harman’s indicators is caregiver distress.
“If the caregiver is distressed, one, they might not be able to provide the quality of care needed for that individual and two, high levels of caregiver distress are linked to long-term care placement,” Harman says. “So if that client wants to stay at home as long as possible, even to their death, then having a caregiver who is mentally able to continue caring for that individual is quite important.”
Quality indicators can help families and the public in general more objectively understand the care their loved ones are receiving.
Standardized indicators could help policy makers and health care administrators understand what is going on in their regions and how they compare to other regions. This understanding is important because currently, there appears to be some disparity within Ontario, says Harman.
“The northern regions have a higher rate on many of the quality indicators than the more central and southern regions of Ontario, which may reflect less than ideal quality of care.”
Harman and Guthrie caution that the indicators don’t necessarily indicate quality of care in a definitive way. They should therefore be treated not as report cards but as flags to help home care clinicians and managers know where to target their quality improvement efforts.
For instance, a high prevalence of patients with pressure ulcers – bedsores – could indicate poor quality of care. However, it could also indicate a high percentage of patients in the very last days of their lives. At that point, it can become difficult and painful to move patients, which is necessary to avoid pressure ulcers, says Guthrie.
Quality indicators are nonetheless useful for improving end-of-life care, says Guthrie. “By looking at the rates of the quality indicators, we can understand which organizations are doing a good job and in turn, learn about how they are improving the quality of care so that others can benefit from their experiences.”
It’s also important to be able to assess quality of care for the purposes of public accountability, says Guthrie. “People increasingly want to know what they’re getting for their money. They want to know that the system is working well.”
The Canadian Institutes of Health Research funded Harman and Guthrie’s research as a one-year project. It’s a stepping stone to a larger, national-level project Guthrie is currently seeking funding for.
The ultimate goal of the larger project is to have a national, clinically tested set of quality indicators for palliative care that can be used in home care or in long-term care and hospice settings, says Guthrie.
“The more palliative home care is understood and tracked, the better it will be and the more people will have confidence in it. This will ultimately lead to more people experiencing the kind of peaceful and comfortable death that we all hope for.”
A better understanding of palliative home care will also help people benefit more and earlier from care aimed at improving quality of life. Not only will this benefit patients, it could save the health care system money, since it will tend to lead to less time spent in hospitals, says Guthrie.
“Everyone has a right to good-quality palliative care. If we really want the system to work well and we want our loved ones to be taken care of when the time comes, we need to know where to put the resources; we need to know how to do this really well within a limited funding structure. There is no doubt in my mind that we can do better with what we have.”
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