Continuing care a growing concern as Albertans age
Some say UCP's reforms will help; others worry about fragmentation
The decision to care for her husband at home wasn't cheap. It required a new hospital bed and lift. But for Fran Howell it was the best option.
The former nurse, 81, lives in Cochrane, about 20 kilometres west of Calgary, where she is the primary caregiver for her husband Ray, 82, who was diagnosed with Parkinson's disease in 2015.
Since then, especially after being hospitalized in 2019, his health significantly declined.
“I can look after him myself, but I can't,” said Fran, whose care effort requires her to be at home all the time, providing care for at least 12 hours a day.
She only qualifies for home care workers to help with personal care up to an hour each morning, but weekend care depends on whether staff are available.
Even when home care workers come, Fran still needs to be there.
Her kids also pitch in, but she can't get three hours per month of respite to attend a Parkinson's support group..
“There's not enough people,” she said, adding she believes those workers need more incentives, especially in rural areas.
“I really don't know what the solution is, but pay them more money,” she said.
When her mother was in a longterm care facility, up until 2015, the family hired extra help because the facility was short-staffed. That meant when it was time for Ray to be discharged from the hospital a year-and-a-half ago, the prospect of placing him in a long-term care facility was a non-starter.
“We have to try this first, and I said, `That's what we want to do,'” she said.
It's a sentiment that is common, said Donna Wilson, a nursing professor and researcher on policies related to aging and end-of-life care at the University of Alberta.
“Nobody wants to go into a nursing home. Your family will burn out before you get into a nursing home,” she said, noting facilities have traditionally funded two hours — over the course of 24 hours a day — of personal care.
“We've turned a blind eye to that for forever,” said Wilson.
In contrast, the staffing ratio in a hospital means that care is typically four hours, she said.
` EVENTUALLY, WE CAN'T DODGE THIS BULLET'
Despite concerns that the Alberta government's plan to dismantle its provincial health authority will lead to a fragmented system, some say the restructuring offers hope for a beleaguered continuing care system.
Wilson told Postmedia the province currently has almost 76,000 people 85 years old or older, but there are about 78,000 people between the ages of 80 and 84.
“In less than five years, we're going to have a doubling in the number of people who are at the age where either they need to go into a nursing home, or they need to rely on their community, or they need to rely on their family, or they're going to be sick, they're going to be in hospital, they're going to be waiting for placement in a continuing care facility,” said Wilson. “Eventually, we can't dodge this bullet.”
Even though Alberta has a comparatively young population, by 2031 seniors will make up a larger share of the population than children under 14, following the national trend. A 2021 report commissioned by the Alberta government estimated that demand for continuing care services will grow by 62 per cent by 2030.
Wilson said she believes the restructuring presents an opportunity to better plan for demands in continuing care, which has long been thought of as the “poor cousin” of primary and acute care under Alberta Health Services (AHS). It will have its own governing organization. But, she stressed, it will need dedicated funding.
“The most important thing is that this new organization has its own budget, so it can actually plan ahead for 10 years or 20 years, instead of AHS, which really went from year to year depending on the crisis of the day,” said Wilson, noting that the COVID-19 pandemic showed how resources, including workers, can be siphoned from continuing care.
Wilson said her one concern, other than wanting to see more secure funding, is ensuring capacity for hospice and end-of-life care.
Her research suggests that where you live often determines how accessible home care and community services are, with enormous differences across the province.
“We've got haves, and havenots,” said Wilson, who added as many as one-quarter of people who are considered for home care are turned down.
THE RISK OF FRAGMENTATION
Toronto-based health policy analyst Dr. Michael Rachlis, who has written extensively on continuing care services, told Postmedia under such a massive shift, leaders need to be strategic in their planning.
“My concern would be, specifically around continuing care, is that the best models have integrated funding and integrated governance,” he said.
The danger is that decision-making becomes even more siloed, he said, especially since you can't run continuing care without family doctors and nurse practitioners.
“That will make things worse. It's already bad, and this will make things worse in this area for sure.”
The government aims to create an integration council, with cabinet ministers, to co-ordinate among the four new planned health organizations.
Wilson said fragmentation is always the potential concern with separate organizations, but the integration council has the potential to co-ordinate across the system, and will need to be held accountable for meeting its goals.
“Could there be some silos in the future? Potentially, yes, but that would tell me that the integration council should be sacked.”
For his part, Rachlis still had questions, noting the government hasn't offered details about how the new system might affect individual patients as they navigate through things like home care, acute care and long-term care.
It's also unclear how family doctors and nurse practitioners will work effectively with nursing home and home care staff and services.
“They don't know where their budgets are going to come from,” said Rachlis.
Feisal Keshavjee, chairman of the Alberta Continuing Care Association, which represents a majority of the continuing care, home care and long-term care operators in Alberta outside of AHS, expressed optimism that the new provincial organization dedicated to continuing care will help add more spaces, and attract workers.
“So, now you're at the table with an equal footing to acute care and primary care — you have a champion for your issues,” he told Postmedia, adding work is underway with the government to attract and keep staff — “the biggest issue we have right now.”
In a series of articles published by the British Medical Journal last year, researchers wrote that stabilizing long-term care staffing, across Canada, will require better labour supports for an “underpaid and undervalued” workforce in a system that often relies on the work of racialized women.
Keshavjee said fragmented silos already existed in AHS, and the integration council can make sure things don't fall through the cracks.
WILL CONTINUING CARE BE INCREASINGLY PRIVATIZED?
Alberta's Opposition NDP has warned that the moves will concentrate control over health care in the premier's office and herald more privatization.
After planning documents leaked to the NDP in November indicated the government was reviewing the idea of selling its continuing care subsidiaries, Capital Care Group and Carewest, Health Minister Adriana LaGrange said there is “absolutely no plan” to privatize health care.
Nevertheless, Rachlis said Alberta could be looking to contract out more services to for-profit facilities, and private operators will be lobbying for that. The UCP has expanded surgeries delivered by private clinics in an effort to lower wait times.
If that expands further into continuing care, Rachlis warned that Alberta will see “a race to the bottom,” noting what is needed instead is wage parity between the community sector, acute care and long-term care.
Wilson said Alberta is unusual because only about 50 per cent of the province's nursing homes are private, but government funding, oversight and accreditation stretch across public and for-profit operators.
“I don't have a huge amount of concern about whether we have a private nursing home or a non-profit nursing home because we have those rules,” she said, adding the question remains — will the government sell off the organizations it owns?
Keshavjee said he doesn't see the restructuring leading to more private care operators being contracted out, but instead predicts more primary care being integrated into the community.
A long-time health-care consultant who was involved in one of many of the province's health-care restructuring efforts in the 1990s, Keshavjee said he now sees every transformational effort as a continued process of improvement.
“Alberta has always been in the forefront of these changes,” he said, and that work has set the stage for other provinces' changes to health care, and with each restructuring, there are bound to be both positives and negatives.
While many have pointed out the benefits of AHS's province-wide procurement and purchasing system, Keshavjee said he believes it will remain in place.
WHERE ARE WE GOING FROM HERE?
Rachlis said he'll be watching to see if the new system will support models of care like The Good Samaritan Society's Comprehensive Home Option for Integrated Care for the Elderly (CHOICE) program, based in Edmonton, which helps seniors with complex needs stay at home by helping them access key services, from meals to physician care.
For Rachlis, if the new system doesn't take into account the safety and care of the most vulnerable patients, changing the governance and financing of the entire healthcare system could be dangerous.
“If they aren't using patient scenarios and use cases to guide the development of a new system, if they don't have 40 cases of community care that they're looking at, and planning the process at the patient level, then they're not doing what they need to be doing to make sure that care is going to be safe.”
After The Continuing Care Act was passed in the legislature in May 2022, the government put specific care compliance standards into force Friday with two cabinet orders.
The legislation came after a facility-based review in 2021 from consultants at MNP that called for increased staffing in order to boost daily hours of care.
The UCP government also pledged in 2021 to start phasing out shared rooms in long-term care facilities.
It aims to fully eliminate the ward rooms by 2027.
With its budget, introduced last week, the government signalled that it plans to commit $1 billion over three years to following through with more recommendations from the facility-based continuing care review. It doesn't go into all the details of the review's 42 proposals.
In 2022, the UCP also started putting more money into home care in an effort to avoid or delay admission to facilities, following the review's recommendation to dedicate more resources into getting clients home care.
“We're starting that strategic shift now with more money for home care this year, and it's just the beginning,” said then-health minister Jason Copping at the time.
Among other things, it represents a cost-saving measure. The MNP report estimated that having home care represent 70 per cent of services by 2030 — up from 61 per cent — would save $452 million per year and provide a cumulative capital cost savings of $1.7 billion.
In its most recent budget, the UCP also added $107 million for continuing care operating expenses, boosting that budget line by about 14 per cent, to $1.6 billion from $1.4 billion first budgeted last February.
Home care operating costs are also expected to go up to $921 million from $893 million budgeted in 2023-24 — a three per cent increase.
Historically, Keshavjee said Alberta has been well-resourced in terms of building beds, but “we probably need to catch up with about 7,000 to 10,000 beds. But we'll get there.”