Marcy White assumed her situation was unusual when she first began blogging about some of the issues with the home care her son Jacob, a severely disabled teenager, received.
Born with a rare degenerative disease, Jacob requires care from highly skilled attendants. Yet when a caregiver failed to raise the rails on his bed, he fell to the floor. Although Jacob has been tube-fed since birth, a caregiver gave him some of her own food. White found another care provider asleep on the job. She says another didn’t appear to know the difference between milligrams and milliliters.
“I made many complaints,” White says. She went to the Community Care Access Centre (CCAC) that coordinated her son’s care, taking her concerns all the way to the CEO. She did the same with the agency that provided Jacob’s care. She even emailed some of the agency’s board of directors.
“It got me in trouble,” she says. The agency said it could no longer provide care for her son, and Jacob’s care shifted to another agency.
It’s no secret that home care in Canada is stretched, with increasing pressures from earlier discharges, an aging population, patients with serious chronic conditions and others who, thanks to new medical advances and a continued push away from institutional care, are living at home with levels of medical fragility that would not have been seen even a decade ago.
Most people don’t know what to expect from home care, or where to go for information, says Kimberly Fraser, an associate professor in the Faculty of Nursing at the University of Alberta. Her research program, PRIDE in Home Care, focuses on case management, particularly decision-making, resource allocation and related health policy.
“In my research, I found that a lot of families just don’t know what they can ask for. They don’t have a really solid understanding of the kind of limits of home care or what they should expect,” she says.
That includes staffing issues. Home care may be provided by nurses, registered practical nurses – which are both regulated by their licensing body – or personal support workers (known as health care aides or assistants in some parts of Canada), who are unregulated and usually have 16 to 18 weeks of education through a public or private vocational school.
“A lot of care aides and support workers are exceptional and appropriate for the tasks they are assigned, but they’re not a nurse and their skills and behaviours need to be appraised at the level they are at. They bring knowledge and skills, but they’re not well understood or necessarily consistent from region to region,” Fraser says.
Case managers, who assess client need, develop care plans with the client and family, and coordinate care, are often too stretched to provide much orientation to home care, Fraser notes that the number of home care case managers has remained relatively stagnant since 2010, while the number of clients receiving home care has boomed.
“We’re not necessarily keeping pace with the kind of infrastructure that needs to be in place to support home care well,” she says.
That can leave people like White in the dark about where to turn when they have complains about the care they’re receiving, or worse, leave them feeling vulnerable to retribution if they complain.
“A lot of families are afraid to speak up,” White says. “We live on such an edge. We’re so dependent on these nurses in order for our kids to stay at home. You’re very scared to speak up because you’re scared they’ll pull your hours.”
As the system in Ontario undergoes changes to merge CCACs into the Local Health Integration Networks, is it time to revamp its processes?
Home care demand outstripping innovation
One of the biggest factors contributing to dissatisfaction with home care is its design, says Anne Wojtak, the chief performance officer and senior director of Performance Improvement and Outcomes at the Toronto Central Community Care Access Centre. While publicly funded home care was first tried as a pilot nearly 50 years ago, its design has not evolved to reflect the increasingly complex and chronic patients who need care in the home.
Wojtak wrote an article about how to “Uber-ize” the home care system in Healthcare Management Forum, noting that CCACs have been tied to a complex model of procuring care providers that no longer allows them to take advantage of market competition and, worse, has a payment model that incentivizes volume of care rather than quality, cost-effective care.
While there are changes taking place – including some funds that go directly to patients and caregivers, allowing them to manage their own attendants and care – “these small pockets of innovation are not creating change at the pace that is needed,” Wojtak says.
“Home care wasn’t designed to be 24/7 at home,” she adds. “It’s not a substitute for a long-term care home. We have to think about the alternatives to support patients who need that level of care going forward. We don’t have enough assisted housing or other supports available that are somewhere between being at home or being in an institution, so that the client is still able to live in the community, and family and caregivers are not burning out.”
In addition to advocating for better use of technology – to share health histories and help clients better track and manage their care, for example – Wojtak says home care desperately needs a health human resource plan, one that ensures the work force “has stable income from week to week, is sufficiently skilled and trained for the jobs they are expected to do, and is provided with incentives for delivering higher quality care and better health outcomes.”
Managing home care complaints
In Ontario, home care is coordinated through 14 CCACs, which engage a complex web of about 160 different private for-profit or not-for-profit agencies on 260 separate contracts to fulfill their clients’ needs.
If patients or family members are unsatisfied with their care, they’re advised to speak with their care coordinator at the CCAC. If that doesn’t resolve the problem, they can move their complaint up to their coordinator’s manager at the Client Service Centre.
From there, a complaint can be shared with the Long-Term Care Action Line or the Health Services Appeal and Review Board, depending on the nature of the complaint. These are independent bodies who mediate concerns or review complaints about eligibility or types and amounts for home care services.
“Ensuring quality of care is a joint responsibility of the CCAC and the contracted service providers,” Wojtak says,noting that contracts with care providers are clear that it is the service provider’s responsibility to ensure that their staff have up-to-date training and supervisors to monitor the competency of care delivery.
The last resort: the Patient Ombudsman
If all else fails, a complaint can be taken to the patient ombudsman. The position, which was created in June 2016, investigates serious complaints involving hospitals, long-term care facilities and home care in Ontario.
Christine Elliott, Ontario’s patient ombudsman, says her office has received about 1,300 complaints across all sectors since it opened in June, the vast majority of which were resolved with mediation. Elliott says she cannot discuss how many investigations her office has undertaken – or the recommendations they might make to prevent similar complaints in the future – until they’ve completed their annual report to the Ministry of Health and Long-Term Care, which is expected by July at the earliest.
Elliott says it’s common for a complaint to involve the whole gamut of health professionals and settings, including doctors, nurses or personal support workers, at home and in hospitals and long-term care.
“It just shows how intertwined all of these issues are,” Elliott says. A bad experience in hospital can set up an equally dismal experience with home care, particularly where discharge instructions are unclear.
“I think people are finding the system so intricate and complicated that they often do need assistance in understanding where to go to seek help,” she adds. “We’re finding that’s increasingly happening in our office. We are performing that navigator function, even in situations where we don’t have jurisdiction, because we don’t want to leave patients without help.”
Fear of reprisals
Still, some people caring for sick family members fear the repercussions of making a complaint.
“The fear of reprisal is very real,” Elliott says. “That crosses all three sectors that we deal with. People are afraid, particularly in home care and long-term care, that if they raise a complaint, the care of their loved one will suffer.”
“(When making a complaint in the home care system), people should feel just like they do in any other sector of health care such as a hospital or long term care home,” Fraser says, speaking from the experience of both having operated a nursing agency for 25 years in Alberta and having her father receive home care for 22 years in Nova Scotia.
“The piece that’s a little different in the home than in the hospital is that you’re in an intimate space and if you’re not connecting with (the care provider) and you’re going to be in that space for years, that can be problematic,” Fraser says.
“We need to help clients or families feel safe in raising their concerns and this lies mainly in the relationship they have with their case manager and their care provider agency.”
Elliott agrees, saying agencies and others shouldn’t fear criticism, but instead develop a culture that sees complaints as a step to finding improvements.
All CCACs publicly report results of their client experience surveys through Health Quality Ontario. A more standardized reporting system on complaints, as well as more standardized timelines for responding to complaints, is expected to be introduced in the coming months.
“People aren’t looking for money, they’re not looking for a way to get back at CEOs or anything of that nature,” Elliott says. “They just want to make sure that by voicing their concerns to us, we can make recommendations for change that will make the experience better for other people.”
Meanwhile, White and others like her continue to press for a better system – one that can diffuse the perceived risk of making a complaint, and one with the authority to ensure better training and minimum quality standards for the various providers involved with in-home care.
“When one person speaks out or complains, it’s easy for an onlooker to assume that this is an isolated occurrence, the family is too demanding or the stories are exaggerated,” White says. “But when the same experiences occur in homes across the province, it’s time for a thorough investigation, accountability and consequences.”