Long-term health care: 

A look inside the often-baffling system 

By: Theresa Boyle Health, Published Toronto Star on Fri Jun 21 2013

Howard Cohen was told he had five days to find a long-term care home and move his mother out of hospital. Is this any way to run a health-care system?

Last July, Howard Cohen was thrown into a tailspin that many Ontarians find themselves in when an elderly loved one suddenly falls ill.His 91-year-old mother, Norma, was diagnosed with colon cancer at North York General Hospital.

Cohen, a doctor, decided against surgery, given his mother’s quick and marked deterioration, her age, and the fact she has dementia and had recently suffered a heart attack.

After informing the hospital of his decision, he says he was told she had only five business days to vacate her bed and find a long-term care (LTC) home, formerly known as a nursing home.

 

Vince Talotta / Toronto Star

Norma Cohen has been at North York General Hospital for almost a year, waiting to move to a long-term care facility.

Last July, Howard Cohen was thrown into a tailspin that many Ontarians find themselves in when an elderly loved one suddenly falls ill.His 91-year-old mother, Norma, was diagnosed with colon cancer at North York General Hospital.

Cohen, a doctor, decided against surgery, given his mother’s quick and marked deterioration, her age, and the fact she has dementia and had recently suffered a heart attack.

After informing the hospital of his decision, he says he was told she had only five business days to vacate her bed and find a long-term care (LTC) home, formerly known as a nursing home.

Cohen recounts how he was given a list of local homes, told to pick five and rank them in order of preference. Three would have to have short waits and his mother would have to go to the first home with a bed available.

Cohen started to climb what would be a steep learning curve, researching and touring homes. He was perplexed by the disparities, particularly when it came to what the homes had to offer residents with dementia. These same disparities result in some homes having empty beds, while others have waits as long as 14 years.He was stunned to discover, he says, that he had been misinformed and given inadequate information about how to select a home by a hospital social worker and a case manager from one of the province’s 14 community-care access centres (CCACs), which control entry into LTC homes.

After intense research that involved talking to seniors’ advocates and even consulting the Long-Term Care Homes Act, Cohen discovered he did not have to choose as many as five homes, including three with short waits. Nor did he have only five days to make a decision. Nor was he limited to choosing only from the list of homes he was given at the hospital.

“You’re turned upside down. This is a priority because in five days’ time you have got to choose where your loved one will live for the rest of their life and probably will die. You want to make sure it’s the best and that you can advocate for them.”

“I felt pressured, there is no question about it, in trying to make a decision,” he says.

The experience highlights some of the biggest problems in Ontario’s health system today. The hospital sector is rapidly shrinking, with patients moving in and out of fewer beds faster than ever. Ontario has 2.4 hospital beds for every 1,000 residents, the lowest ratio of any province and most developed countries.

There is enormous pressure to quickly discharge seniors like Norma.

At the same time, a growing and aging population is fuelling demand for long-term care. The number of people waiting for beds jumped by almost 85 per cent between 2005 and 2012, when there were 19,000 waiting for placement, according to the provincial auditor. But the number of beds increased by only 3 per cent during that time.

The home- and community-care sectors are growing, helping seniors to stay in their own homes longer, but not fast enough to keep up with demand. Meantime, families are coming up against health officials who are trying to keep the flow of patients moving by bending rules in the face of limited resources.

Felt ‘coerced’

For Howard Cohen, it was a baffling and distressing time. His mother was too ill to return to her retirement home and needed the 24-hour health care of an LTC facility. It was a world of which he knew little, but he had to find her a new home — fast.

“I didn’t know what my rights were, I didn’t know anything about special dementia programs, or how old homes were. I didn’t even know to ask these questions,” he says.

Cohen says he now feels he was being “coerced” into making a quick decision that was not in his mother’s best interests. He has agreed to tell his story to help others in the same situation learn about their rights.Believing he had only five days to find his mother a home, he researched, phoned and toured facilities in between seeing his own patients. He was on call at the time, working overnight, with shifts as long as 36 hours.

“You’re turned upside down. This is a priority because in five days’ time you have got to choose where your loved one will live for the rest of their life and probably will die. You want to make sure it’s the best and that you can advocate for them,” he says.

North York General Hospital spokesperson Marcelo Gomez-Wiuckstern says privacy laws prevent him from discussing individual patients. But he went on to explain that last year the hospital had a process in place to “encourage” patients to temporarily move to LTC homes with short waits until beds became available in the homes where they really wanted to move.

That has since changed and the new process involves discharging patients to their own homes, with home-care support, until a bed becomes available in a LTC facility of their choice.

“In some cases, families do not feel they are prepared to take their loved one home and prefer to have them stay in the hospital while waiting for their preferred facility,” Gomez-Wiuckstern says.

But Jane Meadus, a lawyer with the Advocacy Centre for the Elderly, says she constantly hears from families like the Cohens who have been misinformed and pressured to move loved ones to homes with short waits. This reporter has heard similar stories.

“The rules are being broken. People are being lied to, no question. They are being told they have to do things that are not in accordance with the law, in order for hospitals to get them out of beds,” Meadus says.

Applicants can choose fewer than five homes if they wish, Meadus says. They must be given “reasonable time” to make their choices. They are also free to apply to any home in the province and are not limited to choosing from a pre-selected list.

And while they are not required to choose homes with short waits, Meadus says they might want to consider doing so because hospitals don’t provide the programming and type of care available in LTC homes and patients are at risk of acquiring hospital-borne inflections.

The squeeze is so great at both ends — hospitals and long-term care — that many ailing seniors are wrongly told they must go home from hospital before they can even apply to a nursing home, Meadus says.  “I have issues with them putting people into the community who shouldn’t be going because it’s not safe,” she says. 

In 2011, the province cracked down on hospitals that were breaking the rules. As reported in the Star, hospitals were threatening patients with daily charges of up to $1,800 unless they moved to the first available bed from a pre-selected list of homes with short waits.The issue of LTC waits is so problematic that provincial auditor Jim McCarter dedicated a chapter of his annual report to it last December. 

He wrote that there were about 2,000 Ontarians waiting in hospital beds for LTC in March last year. Of the 1,000 in acute-care hospital beds, some 90 per cent were placed in LTC within 495 days, with waits being longest for the hardest-to-serve patients, including those with dementia.

McCarter pointed out that applicants waiting in hospital for LTC beds — like Norma — generally have no priority over applicants from the community. He recommended they be given priority since it costs the health system more to operate a hospital bed than a LTC bed.

One day in a hospital costs $1,000; one day in LTC costs $130; and a day of home care or community care costs $55.

The auditor said that by freeing up beds occupied by patients waiting for LTC, there would be more available for other patients, including those coming in through the ER, where waits can be long.

McCarter wrote that even though Ontario gives individuals the right to freely choose what homes they want to apply to, other provinces have stricter policies and allow hospitals to force patients to move to the first vacant long-term care bed. He suggested Ontario consider this.

But removing applicant choice would be a politically unpopular idea and it’s not on the radar in Ontario. “The primacy of choice and consent” is entrenched the Long-Term Care Homes Act, says Sheamus Murphy, director of communications for Health Minister Deb Matthews.

“Nobody can be forced into any particular long-term care home,” he says. 

Murphy notes that the Liberal government has taken many steps to address LTC waits, including opening 9,000 new beds. As well, a recent investment of $260 million in home and community care is taking pressure off the LTC system by helping seniors get care in their own homes.

‘It was appalling’

During his search, Howard Cohen saw homes where he would never want a loved one to live, particularly one with dementia. “They were terrible. The patients I saw weren’t stimulated. I saw a lot of people sitting around a television set. They were in wheelchairs and left alone. Maybe it was isolated, but it seemed to be repeated in institutions I went to,” he says.

“It was very appalling. This is not what you would like to see happen in a facility that is supposed to be taking care of you.”

According to an analysis undertaken last year by the Ontario Association of Community Care Access Centres (OACCAC), 21 per cent of Ontario’s 640 long-term care facilities have fewer than five applicants on their wait lists.

There are actually beds sitting empty in some of these homes. That’s because there are different wait lists for different types of beds — basic, private and semi-private, male and female — and no one has applied to get into some of them.

Meantime, 12 per cent of homes have more than 150 people on their waiting lists.The OACCAC analysis also shows that one in five applicants chooses only one home.Many homes with short waits are older. They haven’t been renovated and don’t look as nice as newer homes, but the quality of care is comparable, argues OACCAC spokesperson Gabriella Skubincan, echoing an oft-heard sentiment.

Offering an analogy, she says Toronto General Hospital provides good care even though it is old and not pleasing to the eye.

“Often people don’t have a choice as to which hospital they get admitted into for care, depending on what they need, but they can choose their LTC home and can make choices based on very different criteria, including location,” she says.

But preference for newer homes is clearly about more than esthetics. New and recently renovated homes are better designed to meet the needs of seniors, for example, with wider doorways for wheelchairs and layouts that are easier to manage for residents with dementia.

Newer homes offer residents more privacy. A basic bed in an older home can be in a four-person ward, whereas in a newer home it can be in a room for two, separated by a partition, or even in a private room

In 2009, the province announced plans to renovate 329 older homes. But to date, only 4,000 of 35,000 beds in need of renewal have been approved for redevelopment, says Candace Chartier, CEO of the Ontario Long-Term Care Association.

“We believe additional investment is needed to meet growing need,” she says, adding that renovating older homes would make them more attractive options.Meantime, seniors’ advocates like Meadus argue there are simply not enough homes and more need to be built. 

Geriatrician Dr. Samir Sinha, who is heading up the Health Ministry’s seniors’ strategy, says there is no question Ontario will eventually have to build more LTC homes, an extremely costly endeavour.

In the meantime, investments should continue to be made in home and community care, he says, explaining this can help reduce the LTC demand. He cites studies showing a third of LTC residents could remain in their own homes with support from home- and community-care services.

“Are there challenges in long-term care? Absolutely, (especially) as the patient population becomes much more high-needs,” he says. “We just need to make sure we have the right mix of services in the right place to meet that need.”

Disparities exist

While preference for newer homes is indisputably a big factor gumming up wait lists, Howard Cohen’s experience shows there is a lot more to the disparities between facilities.

Among the most desirable are Baycrest’s Apotex Centre, Jewish Home for the Aged and Kensington Gardens, the only two homes Cohen ended up applying to on behalf of his mother, in that order of preference. He did so despite the protestations of the hospital social worker and CCAC case manager.

“I was told under no uncertain terms, ‘Do not choose Baycrest because their waiting list is (years) and it’s not realistic,’” Howard recounts. “They were angry. I was told, ‘(You) can’t do that. The hospital is going to be very upset.’”

But Cohen stood his ground, armed with research material showing he was within his rights.

He says he picked Baycrest and Kensington because they are best suited to his mother. Both have specially trained staff working in dedicated units for residents with dementia.

Baycrest is a designated Jewish home and the Cohens are Jewish. Kensington doesn’t have this designation but has a large Jewish population. Both facilities are modern.

“As far as I was concerned, those are the best to handle dementia patients. You try to query the CCAC about which are the best centres for dementia and they don’t give you any help,” he charges.

Cohen is right to be concerned about dementia care. Earlier this month, the Alzheimer Society of Ontario and the advocacy group Concerned Friends of Ontario Citizens in Care Facilities called attention to what they say is a failure of Ontario’s long-term care system to meet the needs of those with dementia.

Not only is there a shortage of beds and long waits for these residents, but staff are often not equipped to meet their needs, the groups charge.“There is no guarantee they will receive care from staff who are trained and who have the skills to respond to the needs of residents with dementia or cognitive impairment,” argues Gale Carey, CEO of the Alzheimer Society.

Charitable homes

Another factorbehind differences in waits between homes is their different corporate structures. This is something health officials don’t seem to want to talk about.

The ratio of applicants to beds is greatest at homes run by charities and non-profit entities, like Baycrest and Kensington, respectively, according to an analysis of Health Ministry data by the Ontario Association of Non-Profit Homes and Services for Seniors (OANHSS). That is followed by municipally run homes and then private, for-profit homes.

Charitable and non-profit homes account for only 25 per cent of all homes in Ontario, but are sought after by 42 per cent of applicants. Municipal facilities account for 17 per cent of all homes and are sought after by 26 per cent of applicants. Private, for-profit facilities account for 58 per cent of all homes and 32 per cent of the waiting list.

But just because there is more demand for the charitable and non-profit sectors doesn’t mean those homes are better than those in the municipal and for-profit sectors, Meadus cautions: “I don’t really take a position on that because I think there are good and bad in (all of them).” Many charitable homes like Baycrest were created for seniors of certain ethnic or religious backgrounds and are particularly popular. They tend to have strong community connections, a big volunteer presence and lots of fundraising.

That, in turn, translates into extra resources for modern upgrades, more activities, higher staffing levels, additional amenities and, simply put, more pleasant and comfortable surroundings.

OANHSS CEO Donna Rubin says non-profit and municipal homes also tend to have more funding to hire extra staff.So who ends up in the homes where few others want to go? Residents include seniors with no family, no advocates and those who don’t have the wherewithal to advocate for themselves, Meadus charges.

Also getting short shrift, she argues, are seniors who opt to move into expensive, unregulated retirement homes because they can’t get into long-term care. They can end up spending more than $5,000 a month on both rent and private health care.“Retirement homes are becoming the new long-term care homes,” she says. “The use of retirement homes to care for persons who need long-term care is a form of two-tiered medicine where there is not the same type of oversight (and) level of care.”

Growing demand

The main underlying pressure on the LTC system is growing demand, provincial auditor McCarter wrote in his annual report. The median wait time tripled between 2005 and 2012, to 98 days from 36. During that time, the number of Ontarians 75 and older jumped by more than 20 per cent. Their numbers are expected to grow by another 30 per cent by 2021, increasing pressure even more.

McCarter found that crisis applicants wait a median of 94 days. This includes frail seniors whose caregivers have suddenly fallen ill and can no longer tend to them at home.

Meantime, those with moderate needs wait 10 to 14 months and most others “for years.”

But the ever-optimistic Sinha has a different take on the numbers, choosing instead to look at trends since 2009-2010, when waits were at their worst. Since that time, the number of people waiting for LTC dropped to 19,000 from 25,000. The number of patients waiting in hospital for LTC dropped by 32 per cent, to 2,141 from 3,145.

The province has made a dent in the problem by investing more in home and community care. That has allowed 30,000 seniors who might otherwise have ended up in LTC to continue living in their own homes, Sinha says.  Still, he acknowledges LTC demand will continue to grow and cites a Conference Board of Canada study that projects the need will increase to 238,000 Ontarians by 2031. Currently, 112,000 Ontarians are served annually.

The province can keep LTC demand in check by continuing to beef up home and community care, he says, adding there is also a huge need for more supportive housing.  “These are really tough, thorny issues. These are issues that can’t be solved overnight,” Sinha says.

Work in progress

Old and sick, the average resident lives in long-term care for about three years before death, an amount of time that is expected to decrease given that it’s harder than ever to get into a home these days.

That, in turn, means about one-third of the province’s 76,000 long-term care beds become available for new placements annually.

To make the navigation process easier, the auditor urged Ontario’s 14 CCACs to publicly post wait times. Nine are now doing so and it’s a work in progress. But Meadus says the lists don’t give at true picture because they only provide overall median waits, not waits faced by applicants in different priority levels, something McCarter advocated. Priority levels are assigned, for example, to applicants in crisis, veterans and those moving to homes where spouses already live.

Applicants also get priority for homes that serve their ethnicity or religion, but because these facilities are so popular, waits are as long as 14 years, according to the auditor.

Another factor affecting waits is the ability of homes to care for residents with behavioural problems, caused by such things as dementia, psychiatric or cognitive impairments. Some may need to be in secure, locked units.And some residents need higher levels of care because, for example, they have conditions requiring ventilation or they use feeding tubes. 

Wait lists are also affected by the fact that some homes just have bad reputations. Though less than perfect, Health Ministry inspection reports show which homes get a lot of complaints and which ones have failed inspections.

Another tool that shows how well — or not — homes are performing is Health Quality Ontario’s Long-Term Care public reporting website. It offers a glimpse into how residents in individual homes are faring by tracking the level of falls, pressure ulcers, incontinence and use of restraints. This is also a work in progress and not all homes are publicly reporting results yet.

Lastly, another factor affecting waits is the ability to pay extra for private and semi-private rooms. Those who can afford it get in faster. Even though only 40 per cent of applicants apply for “preferred accommodation,” homes can designate up to 60 per cent of beds for those who pay more.

Still waiting

Almost a year later, Norma is still waiting in North York General. Howard Cohen recognizes there is a good chance she could die before an LTC bed becomes available.

In fact, 15 per cent of applicants pass away while still on the waiting list, according to the auditor.

The latest wait time Cohen has been given is 1.5 years for Baycrest and four to five years for Kensington.

Waiting in a hospital bed is not what he wants for his mother, but he feels he’s making the best of a bad situation. He has hired a full-time personal support worker to help feed her, get her out of bed and give her the extra help and stimulation that hospital staff cannot.

“It’s a terrible situation because the population is aging and they don’t have the facilities to care for them,” he says.

“The system is probably stretched to the seams . . . It is a very unfortunate reflection on our health system.”

Reporter Theresa Boyle can be reached at tboyle@thestar.ca .   
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