When Jennifer Sewell had a benign cyst removed from her left breast last summer, the procedure was supposed to be a straightforward day surgery.
Instead, the 40-year-old mother of two from rural Southwestern Ontario developed an infection at her incision site, a wound that took more than five months to heal.
In that time, Ms. Sewell received a crash course in the new world of Ontario home care, one in which the treatment patients need is not necessarily delivered in their homes, but rather in privately operated clinics that have brought significant savings to the province's Community Care Access Centres (CCACs), the 14 publicly funded organizations that co-ordinate nursing visits and personal care in homes across Canada's largest province.
"[Patients] were told upon discharge from hospital that they would have home care, but nobody told them that home care was not actually delivered to their home," said Natalie Mehra, the executive director of the Ontario Health Coalition, a public health-care activist organization that held consultations with home-care patients across the province before publishing a scathing report on the sector in March. "We've heard from people for whom it caused a lot of hardship, and they were never given any choice about whether or not they drove to a clinic."
The CCAC nursing clinic in Chatham that Ms. Sewell attended for daily wound cleaning is one of at least 111 that have sprung up across Ontario, most in the last decade as the Liberal government has shifted as much medical care as possible out of expensive hospitals and into private homes and community settings.
In a three-month investigation, The Globe and Mail talked to dozens of previous and current patients as well as front-line staff, community groups, unions, for-profit and non-profit home-care providers and industry organizations, and found that the home-care system in Canada's largest province is plagued by inconsistent standards of care, byzantine processes and a troubling lack of transparency for both patients and family caregivers.
CCAC executives say the nursing clinics – whose operations they contract out to for-profit and non-profit companies such as Bayshore Home Health and Saint Elizabeth – are an ingenious solution to one of the main problems spurred by the rise of at-home medical care.
Although generally cheaper than keeping patients in hospitals, sending nurses to farflung homes can be pricey, too. Inviting patients who are well enough to drive to a centrally located clinic for wound dressing, intravenous infusions, diabetic foot care, dialysis, catheter care and other medical treatments has allowed the home-care system to reinvest millions of dollars into care for the sickest bed-bound patients, according to the CCACs.
But critics of Ontario's nursing clinic model warn that other patients who might be better cared for in their homes – for example, those who are too ill to travel or do not have relatives to chauffeur them to the clinic – are being pressured to use the clinics by the CCACs, primarily as a way for the publicly funded centres to meet their budgetary targets.
Executives at some of the province's 14 CCACs say they only send willing and capable clients to the clinics. There is no arm-twisting required because the clinic setting is extremely popular with patients, according to Stacey Daub, the chief executive officer of the Toronto Central CCAC, which oversees four nursing clinics in Canada's largest city.
"We get glowing reviews," she said. "Our highest client experience and satisfaction ratings are at our clinics. I think mostly because for many people it's not great to sit at home waiting for a nurse to come to your house. … It's like waiting for Rogers."
What is not in dispute is the significant amount of money the clinics save Ontario's cash-strapped public home-care system. Some CCACs estimate it costs half as much to treat a patient at a clinic as it would at home. Clinic nurses can see many more patients in a day because they do not have to drive from house to house.
In the Central CCAC, which covers the suburban cities north of Toronto, seven nursing clinics delivered $9.6-million in savings in the last fiscal year when compared with what it would have cost to tend to those patients in their homes.
The Hamilton Niagara Haldimand Brant CCAC estimated its 11 nursing clinics saved $3.4-million last year; the South West CCAC, which includes London, figures it saved $1-million last year thanks to its 33 nursing clinics.
The Champlain CCAC, which covers the Ottawa region, has put a huge emphasis on expanding its clinic network recently as it struggles to avoid a deficit. It opened seven new clinics in 2014-2015 alone and another in May of this year, bringing the region's total to 20.
"We have about a zillion initiatives to save money and we have succeeded very well [with the clinics,]" said Gilles Lanteigne, the former chief executive officer of the Champlain CCAC who retired in June.
About 18 per cent of nursing visits in the Champlain region used to be done at the clinics; now that figure is 25 to 26 per cent, Mr. Lanteigne added. "Every 1 per cent that goes [to the clinics], it's $200,000 that we save," he said. "So it is big, big, big."
Achieving those big savings, however, can lead to frenetic days for clinic employees like Victoria Ralph, a registered practical nurse who has worked for the past three-and-a-half years at a CCAC clinic in St. Catharines, near Niagara Falls, operated by the for-profit company CareParters. Since early April, she and roughly 130 of her CarePartners colleagues have been on strike seeking a first contract.
Ms. Ralph, who worked in traditional home care before switching to the clinic, says she loves her job and her clients, but finds it hard at times to see the three patients an hour expected of her, given the complexity of some of the cases.
During a typical 12-hour shift she sees more than 30 patients, she says, and more are booked on the assumption that some will not turn up for their appointment.
"It becomes an assembly line," Ms. Ralph said. (CarePartners declined an interview request, citing the ongoing labour dispute.)
Despite the speed with which they can be asked to dress wounds, clinic nurses can make all the difference to patients like Sharon Mueller – even if travelling to the clinic is fatiguing. The retired high-school teacher, now 73, developed an infection on her lower right abdomen after having a tumour removed from her ovary last fall.
In the beginning, a nurse came to Ms. Mueller's home in LaSalle, near Windsor, to change the dressing on her wound, but the local CCAC then asked Ms. Mueller to make the half-hour drive to a CCAC nursing clinic in Windsor. Her 72-year-old husband, Michael, drove her there daily for more than five months until the incision healed.
"It was hard because we had a bad winter like everyone else and we had to get up and go," Ms. Mueller said. "I was going through a lot with this because [the wound] just wasn't letting up. It was rough, but the nurses were a source of encouragement for me. I have to say, they were wonderful."
Ms. Sewell's clinic experience, on the other hand, was so negative she eventually turned to the nurse at her family doctor's office for the wound care she required after having the cyst removed from her breast.
Sent home from hospital with no instructions on how to care for the 10-centimetre gash, Ms. Sewell swiftly developed a blackened, clot-filled infection that her doctor said would require daily cleaning co-ordinated by the area's home-care access centre, officially known as the Erie-St. Clair CCAC.
When Ms. Sewell contacted the centre, she was surprised to be told to drive about 40 minutes to one of its clinics in Sarnia, where a nurse would teach her to clean and dress the wound herself. Ms. Sewell, a bank manager with no medical training, balked at trying do-it-yourself wound care. The CCAC relented – briefly – by dispatching a nurse to her home in the tiny town of Florence for five days before directing her to another CCAC clinic in Chatham, the small city where Ms. Sewell works.
"I'm not a nurse. I can barely put a Band-Aid on properly," she said. "I did agree to going to CCAC in Chatham because I didn't feel like I had any other choices."
Dealing with the Chatham CCAC clinic was frustrating, Ms. Sewell said. Visits that should have taken 15 minutes stretched into hours as different nurses asked her to recount her case history every day. "Not only did I have to get undressed and take my shirt off in front of 30 different strangers, I had to tell my whole life story that many times," Ms. Sewell said.
What's more, the wound refused to heal. Ms. Sewell's doctor asked the CCAC clinic to switch to an older type of dressing, but the clinic's staff refused, saying the dressing was not in keeping with the CCAC's strict best practices. Five weeks into her wound-care regime at the clinic, Ms. Sewell quit and returned to her doctor's office, where a nurse not bound by the CCAC's rules tended to the infection and helped it heal.
Lori Marshall, the chief executive officer of the Erie-St. Clair CCAC, said she has asked for a review of how nurses are scheduled at the region's three clinics, operated by the for-profit company Bayshore Home Health. "Generally, it is a smaller number of nurses so there isn't as much of an issue around continuity. But I am concerned … that it was identified [as a problem,]" she said.
As for the clinic declining to use the dressing requested by Ms. Sewell's doctor, Ms. Marshall said that if patients prefer dressings the clinics do not carry, they can seek a doctor's prescription for the materials and pay for them out-of-pocket or through private health insurance.
The Erie-St. Clair CCAC, which received a spate of bad publicity last fall after it began making cuts to tackle a looming deficit, has now hired a patient relations officer and is working to be more sensitive to the needs of home-care clients.
"We're trying to be more open and embracing of patient and family feedback to help us improve as an organization," Ms. Marshall said.