Trevor Cranney gets 60 hours of home care a month. Though he’s happy with the quality of care he’s getting, he doesn’t think it’s enough. “I suffer from ALS, and I’m unable to feed myself, brush my hair or do anything,” says the 42-year-old, who was recently given six to nine months to live. He would like two additional hours of housekeeping help a week to take some of the burden off his family -“my wife is currently working full time, being a mother and my caregiver every other minute,” he says. But he says he’s been told the CCAC doesn’t provide homemaking services, and that he’s at the maximum number of hours. Cranney says he asked to file a complaint but hasn’t been provided with the necessary paperwork, and he’s requested to speak to a manager, but hasn’t gotten a call.
So his family takes care of what the CCAC won’t. “My wife does a lot, and my 16-year-old son does a lot of the heavy lifting – physically lifting me,” he says, adding that it doesn’t seem fair that his son has to take care of his father. “There seems to be more of a drive for cutting back on hours than there is for providing care,” he says.
Gilles Lanteigne, the CEO of the Champlain CCAC where Cranney is receiving care, says his experience is unusual. “We have a very structured process to ensure that any patient or family can make a complaint [or escalate it] … the process works very well for most people,” he says, adding that they track and publicly report on complaints. He says a 60-hour-a-month cap isn’t unusual for a regular case – someone that isn’t receiving palliative care, for example. PSWs may provide homemaking services if there is time, and the CCAC can link clients with homemaking providers, but there is a co-payment for those.
- Home care: getting your parent the support they need to live independently
- Supporting Ontario’s unpaid caregivers
- Ontario’s plan for personal support workers
A study by Statistics Canada released this month revealed many more people like Cranney who felt their needs were being only partially met by home care. It found 15% of the 2.2 million Canadians receiving home care in 2012 said they didn’t get all the care they needed from professionals, friends and family. Those who were under 64 were more likely to report that their needs were only partially met, as well as those with a disability and those getting less than 10 hours of care a week. Another 461,000 Canadians reported they needed care at home but weren’t getting any, with low-income people, immigrants and caregivers more likely to say they were not receiving care, but felt they needed it.
Complicating matters is the fact that patient and caregiver satisfaction surveys are only one way of tracking quality of care. So how do those involved in home care, from the government to providers, track the quality of what they’re offering? And how should client satisfaction get taken into account?
These question are becoming more important as the need for home care services across the country rises. Costs have risen 55% since 2008 to $5.8 billion a year – and the number of people served is also growing, up 51% over the last decade to 2.2 million in 2012. Over 70% of those who use home care have recently been sent home from hospitals, and the majority are seniors. They’re helped by 8 million caregivers: relatives and friends who are also deeply involved in their care, may have their own health problems, and often face burnout if resources are inadequate.
Ontario’s Community Care Access Centres
In Ontario, 14 Community Care Access Centres coordinated care to more than 530,000 people in 2011/12. They assess patients and decide how much care they need, and then outsource most of the work to private or not-for-profit companies. The process is initiated and monitored by care coordinators – “the quarterback,” says Anne Wojtak, senior director of performance management and accountability at the Toronto Central CCAC. With limited funding, CCACs sometimes have to limit the number of hours patients get, or put them on wait lists. Some CCACs get more money per capita than others due to historical funding inequities, an issue the Ministry of Health and Long-Term Care says it is addressing.
They are also seeing many more people with multiple medical conditions, who have significantly more complex needs. From 2009/10 to 2012/13, the percentage of people with complex needs grew from 37% to 58% of CCAC patients. “We’re in a growth area, so every CCAC has pressure to see more clients, and we are having far higher complexity of clients than we have ever had before,” says Wojtak.
Patient satisfaction & effectiveness assessments
One key way CCACs study their success is through patient and caregiver surveys. Their survey, run by NRC Picker – the same service many hospitals use – has been in place for the past five years. The latest surveyed more than 27,000 patients and caregivers, asking them to rate the CCAC’s services on a five-point scale. More than 93% of respondents said they had a positive experience with CCAC, compared with 91% in 2011. Starting in October, patient and caregiver satisfaction rates will be factored in to which contracts are given to private service providers.
But patient satisfaction surveys only provide part of the picture. Patients may not be knowledgeable enough to judge the quality of their care, or they may be overly positive out of a sense of politeness or fear of potential repercussions. Also, people who are the sickest or have cognitive problems may not answer the surveys. “There are lots of critiques of patient satisfaction surveys,” says Pat Armstrong, a professor of sociology at York University. “They’re not the most reliable way of assessing the extent to which [the system] works for the people who need care.”
Since 2013, Health Quality Ontario has reported on home care, looking at 11 different metrics. It tracks effectiveness measures like incontinence and communication problems, both of which worsened slightly between 2010/11 and 2011/12. For safety, they report on the number of falls (which increased slightly in 2011/12) and pressure ulcers, which also increased slightly. The results are searchable by CCAC and city; soon, they will also be reported on by individual provider.
This April, CCACs began using Quality Improvement Plans that focus on targeted improvements. “CCACs are encouraged to focus on key priority areas in their QIPs, including hospital readmissions, emergency department visits, client experience, wait times and falls, as well as locally identified priorities,” says David Jensen, spokesperson for the Ministry of Health and Long-Term Care, which believes Ontario is “the lead jurisdiction in Canada for public reporting on home care.”
John Hirdes, a professor at the University of Waterloo and chair of the interRAI Network of Canada, a global network that promotes standardized measures of care, agrees. “In many ways Ontario and Canada has been the lead innovator when it comes to information on quality [on home care],” he says. “We’re the first province to publicly report on quality indicators on home care, we’re one of the first provinces to adopt a standardized assessment methodology for home care.”
All CCACs are also required to have a complaints process, though it’s not standardized. Generally patients begin with their care coordinator at the CCAC, and then escalate to a manager. If the complaint isn’t resolved, patients have the right to go to the Ontario Health Services Appeal and Review Board, an independent review panel. Another option is the Long-Term Care Action Line, which helps customers deal with complaints and can send cases to independent complaint facilitators that mediate in disputes. In 2012/13, the review panel received 11 complaints; the action line received 224 complaints in 2013, 212 of which were referred to independent review panels.
Efforts to track quality across Canada
Alberta runs a similar system, where Alberta Health Services contracts out home care to other providers. Its system came under fire last year when Alberta reduced the number of providers, leading to a number of client complaints, including many about home-care aids missing appointments. That inspired a review from The Health Quality Council of Alberta, an organization that operates at arm’s length from the government. Released in April, it covered Alberta’s continuing health care services, which include home care. The report highlighted the need for more quality control. A variety of methods are used to collect patient safety information, which “greatly impedes effective quality and safety management,” it reads. And it went beyond the province, noting that they didn’t find an example in Canada of a comprehensive quality and safety management program.
“A key finding from our review was that there are tools and mechanisms in place for managing quality and safety in continuing care across Alberta’s healthcare system, however they can be strengthened and applied more consistently,” says Charlene McBrien-Morrison, executive director of the Health Quality Council of Alberta.
At a country-wide level, a 2013 study by the Canadian Patient Safety Institute looked at home care’s quality across the country. It focused on outcomes by addressing adverse events caused by health care, and found that 10% to 13% of people with home care suffered from adverse events every year. The two top types were falls and medication-related issues.
They also found that 56% of those were preventable. Contributing factors included inconsistencies in home care planning and delivery; lack of integration of home care teams; processes, equipment and medication that aren’t standardized; and clients and caregivers making poor decisions. The study recommended the use of standardized policies to develop reportable adverse events nationally.
In the meantime, Cranny has essentially given up. A call he made to his MPP went nowhere, and the program that he thinks could help him, self-directed care, has a waiting list longer than the time he has left. “It’s very frustrating,” he says.