When patient advocate Donna Davis helped a friend navigate the transition from hospital to home care, she encountered a vexing problem.
Hospital and home-care workers "just tell you what to do," Davis recalls. "It's that paternalistic: ‘We will make the decision for you. We will tell you when to go home. We will tell you how to go home'."
Davis, a Saskatchewan nurse and the co-chair of Patients for Patient Safety Canada, said that experience reinforced her belief that patients and their caregivers need to be front and centre in the health-care continuum instead of, often, on the sidelines, especially while transferring between the different parts of the system.
"As a patient you need to know: What have you done?" she says, particularly when moving from a hospital to a home-care situation.
Last year, an estimated 1.4 million Canadians used home care, a 55 per cent rise from three years earlier. Home care is largely provided by a variety of for-profit and non-profit private agencies, and is not without its problems, as CBC News documented on Monday in the story of Lynn Burkitt, 52, of Medicine Hat, Alta.
Burkitt has been suffering for most of the past year after two rolls of festering packing tape left a gaping abscess in her chest following surgery. The packing tape was left in to treat an infection following a double mastectomy, but due to communication problems between the hospital and the home-care agency looking after her it was not changed as it should have been.
"I had no clue[there was packing inside]," said Burkitt. "And I've had surgeries before. If I would've known that, I would've told them" what to look for.
'Not prepared' for influx
Communication between the different sectors in the health-care system is one of the key trouble spots identified in a recent Canadian report. Published last month, the Safety at Home study found about one in 10 home-care patients experience an adverse event of some kind, and that more than half of those incidents are preventable.
Advancing technologies and an aging population are fueling the push toward home care.
Plus, overcrowded hospitals are under immense pressure to free up beds, which can contribute to the types of communication breakdowns like Burkitt experienced, says Davis.
"When you’re trying to relieve pressure at one end, sometimes it has a ripple effect and it causes pressure on another end" of the system, she says. "The staff are very conscious that we need to get this bed empty so we can get patient A in here for their knee replacement."
These kinds of pressures are not likely to let up soon. "The increase in demand is going to continue and the fact is we're not well prepared for it," said Dr. Sholom Glouberman, president of the Patients' Association of Canada.
'Kaleidoscope' of care
Diane Doran, the scientific director of the University of Toronto's Nursing Health Services Research Unit, notes that patients often deal with a rotating cast of nurses and personal-care workers, each with their own style of delivering care.
Patients can "encounter this kaleidoscope of different care providers," she says, and this can increase the risk of communication breakdowns.
Doran was one of the co-leads on the two-year Safety at Home study, which found that the most serious adverse events experienced by patients in the home are falls, medication errors and infections — which are many of the same risks encountered in hospitals.
That finding spurred the Canadian Patient Safety Institute, an Edmonton-based non-profit agency that funded part of the study, to start adapting some of its safety tools for hospitals to the home environment.
The organization is now in the process of refocussing its campaigns on everything from washing hands to keeping medications straight so that both home-care workers and family caregivers can understand them better.
"It’s crucial that we do everything we can to ensure that environment is safe," said the institute's CEO, Hugh MacLeod. "Because if we don't, the consequence will be we will have significant traffic to our ERs."
Canada 'way behind'
MacLeod says the organization has vowed to prioritize home-care safety issues over the next five years — a sign of the times.
"There has been a very significant shift from acute care to home care," he says. "The public is demanding this shift."
While more attention is being paid to how patients are taken care of in the home, Dr. Glouberman says that home care is one of the most underfunded parts of the health-care system and has traditionally received little support.
"We have a general problem in Canada: our health-care system was built around hospitals and doctors. That's its history. Because [of that]
, the development of care in communities has been rather poor, and has been slower than it should be."
Canada lags "way, way behind" other developed countries in providing support to patients being cared for in the community, Glouberman says, adding that we need to increase the range of services available in communities to include more physiotherapy, occupational therapy, transportation help and house support.
In Britain, for example, district nurses visit post-operative patients to assess safety needs in the house, which can include installing bars in bathtubs and adding ramps. These precautions can go a long way to preventing falls.
Doran says that their study of home care across Canada found that often that type of risk assessment wasn't done, but even when it was, it wasn't acted upon because of confusion over whose responsibility it was.
A key recommendation in the Safety at Home study is that home-care agencies turn their case managers into "quarterbacks" who will field patient calls, visit them regularly and liaise with other parts of the health-care system on their patients' behalf.
The use of electronic charts would also go a long way to making sure that details about a patient's care don't get lost between the multiple caregivers and transfers.
Dr. Glouberman notes it would also ease the heavy burden on caregivers by allowing them to do tasks such as accessing home-care schedules and booking appointments online.
Doctors, nurses and personal care workers also need to understand that patients are more knowledgeable than ever on health-care issues.
"Health-care providers have to be willing to accept that knowledge," says Davis. Patients "are taking more of an interest. They’re not as complacent anymore."