In the face of the federal government's announcement that new guidelines for long-term care will not be mandatory, rather up to each province to enforce, some Albertans are calling for change in this province, now.
In speaking about their loved one in care, one St. Albert family describes issues with facility capacity, insufficient care, and disregard for specific care needs during their time in long-term facilities. These insufficiencies affect the loved ones’ dignity and quality of life, they say.
“It’s not that the staff don’t work hard enough, there’s just not enough of them and there are too many helpless patients like Duncan,” said Phyllis Robertson, who has cared for her husband Duncan, a brain hemorrhage and stroke survivor, for the past six years.
Robertson pushed to have Duncan placed in St. Albert--where she lives--instead of Edmonton, so she could more easily visit him. Since moving Duncan to the city's Youville Home, Robertson says she's noticed gaps in his care; including food left on his face and shirt after mealtime, and being left in his jacket on a sweltering summer day.
Robertson says she asked staff why they hadn't attended to her husband in these situations, and they said they were afraid to approach him because he was aggressive and would have to wait until his medication kicked in to address the matter.
"What comes first, the chicken or the egg? Is he aggressive because of his discomfort?" Robertson asked. "I just talk softly to calm him, but they don't know how do to that. I just feel like he has been put in this box of torment."
And though Duncan has a private room and bathroom, it isn’t big enough for his wheelchair, meaning he must be toileted in his bedroom.
“This is a man who lived his life with such grace. There’s no dignity to his care," she said.
In an emailed statement, Karen Diaper--communications manager for the company that runs Youville Home, Covenant Health--said it “strives to ensure residents and family feel welcomed, safe, and supported.”
“We seek to offer opportunities for feedback where we work closely with our residents and their families to address any concerns they may have.”
Long-term care in Alberta
While the pandemic shone a light on the insufficiencies of the long-term care system in Alberta and throughout Canada, experts and advocates say two years later, issues with care are being exacerbated rather than addressed. And new guidelines that are simply voluntary, not mandatory, won't cut it.
“Residents need a minimum standard of around four hours of direct care per day,” Rebecca Graff-McRae, a researcher who has studied long-term care in Alberta, said. “It’s an objective measure if you want a good quality of life.”
In May 2021, the University of Alberta’s Parkland Institute released a study called “Time to Care: Staffing and Workloads in Alberta’s Long-term Care Facilities.” The study, led by Graff-McRae, found many seniors continuing care homes were understaffed and unable to meet the basic care needs of their residents.
The research surveyed more than 350 long-term care staff across Alberta in early 2020 and found 43 per cent of respondents chronically didn’t have enough time to complete their required care tasks.
According to the report, Alberta is one of two provinces which mandates 1.9 hours of direct care per resident per day.
The importance of minimum care hours was echoed in a 2021 provincial report called “Improving quality of life for residents in facility-based continuing care,” but Graff-McRae says there is still a lack of movement toward upping care hours in Alberta long-term care facilities because it involves increasing staff and making positions full-time with better pay and benefits.
“That starts to upset the apple cart in terms of the influence private corporations have,” she said. “It goes against treating long-term care more like a market in which people pick and pay for the level of service they want."
Currently, if family wants the care their loved ones receive to improve, options include hiring a personal care worker or providing the care oneself — a difficult task if the caregiver is working or also has care needs.
According to a March 2021 report by the Canadian Institute for Health Information, 46 per cent of long-term care homes in Alberta are publicly owned, 27 per cent are owned by private for-profit organizations, and 27 per cent are owned by private not-for-profit organizations (including Youville Home).
"We know everybody's suffering from staff shortages in a severe way," Graff-McRae said, noting her survey shows in general, private facility workers had less satisfaction with their working conditions and less confidence they were able to provide the care residents needed.
Not-for-profit staff had more positive responses, with public facility workers have the most confidence in the quality of care over all.
The rise of privatization
Pat Armstrong, a professor of sociology at York University and an expert in long-term care, says drastic decreases in the number of hospital beds over the past 20 years and funding cuts have moved more care out of hospitals, and into home care and long-term care.
“Most people are living longer with complex care needs, but we’re not looking after them in hospitals,” Armstrong said.
Though the Canada Health Act explicitly addresses hospital care and doctor care, it excludes long-term care. Armstrong says over the last two decades, what counts as hospital care has been “more narrowly defined” as forms of acute care. This means care such as housekeeping, food and testing is free, but “once you leave the hospital door, you can be charged” for those same services, she said.
"The government decides who qualifies for long-term care, and it's highly regulated," she said. "They provide most of the funding, but you pay fees."
As a retired nurse, Robertson says what she finds most haunting about Duncan’s experience in long-term care is that the line of health care coverage ends in an arbitrary way.
“How does that make sense?” Robertson asked.
“There’s the political and economic philosophy that suggests public interests should be addressed through public services, and then there’s the philosophy that says we’ll do the minimum and everything else should be subject to the market,” said Graff-McRae.
“There has to be a question about how we address that in terms of vulnerable people who don’t have the same access to services or same ability to manage their own care.”
The cost of long-term care
Robertson says one aspect of Duncan’s care that adds to her distress is the high cost she pays--some $2,300 a month.
“If he didn’t have a university pension I’d be out on the street,” said Robertson, who is currently living on old age security. “I think this is the worst injustice in health care.”
She says Health Minister Jason Copping used 'beautiful words' at a summer announcement of $11.3 million for improving palliative care and "treating people with dignity and respect as a foundation of our health system. It applies particularly at the end of life, when patients are at their most vulnerable.”
“It gave me hope for a moment, until I realized that there are things you could do right now,” Robertson said. “How does government after government get away with putting people away, warehousing them in these horrible places?”
The assistant director of communications for Alberta Health, Charity Wallace, points to investments the government has made in extended care, including $81 million in home care funding to pay for one million additional hours of care in 2022/23. There is also $13 million for the health care aide bursary program “to entice more people to pursue employment in the continuing care sector,” and grant-funded projects with a focus on hospice, grief and bereavement, and advance care planning.
Also mentioned is the new Continuing Care Act, which Wallace said “will support the policy changes required to transform the system.” The new standards, released in early February but not currently being enforced, recommend residents should get at least four hours of direct care every day, and that those who work with them must be paid more.
Advocates for improving long-term care aren't sure, citing concerns there will be a weakening of regulations at different types of facilities. Chris Gallaway, executive director of Friends of Medicare, notes the province authorized a 5.5 per cent inflationary increase to the cost of supportive living and long-term care accommodation in 2022, and that the increase will be subsidized at 2.3 per cent until June 2023.
“As soon as that ends, people will be back to having higher fees,” Gallaway said. “Seniors are seen as a commodity in a lot of our policy decisions, rather than the care being the priority. There are deep structural issues that need to be looked at here--minimum care standards, minimum hours of care, minimum staffing ratios--all things we’re lacking in Alberta.”
Seniors advocate abolished
Alberta's previous NDP government created a seniors advocate position to take up the mantle of investigating issues facing seniors and to advocate on their behalf, but under the UCP the position was abolished and merged into the portfolio of the health advocate.
“It’s a very serious issue,” Rick Brick, Prairie's district director for the National Association of Federal Retirees, said of the position's elimination.
“We need to make sure the government understands the importance of what they are choosing to do and not do, and the effect it’s having on this very sensitive group," Brick said of seniors. "They’re at a time in life when they need that support system."
Seniors are currently the fastest-growing age cohort in the province, with their 665,000 set to double in the next two decades as the baby boomer generation ages.
Brick notes the B.C. seniors advocate (the position also exists in Newfoundland), recently released the “Falling Further Behind” report highlighting financial challenges facing seniors. He says an advocate in Alberta would address long-term care and the issues that arose during the pandemic. (The NDP passed a resolution saying it would restore the seniors advocate role if it forms government again).
Suffering in silence
Graff-McRae says issues around long-term care might be left on the back burner due to ageism and a disconnect from the reality that one day, many of us will require such care.
"Your ability to live out the rest of your life in comfort and dignity — I don’t see why that should be subject to politics,” Graff-McRae said.
