Thousands of Canadians languish in limbo as they wait for long-term care

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Clarence Young sits silently in a wheelchair in the 8th floor hallway of Queen Elizabeth II Health Sciences Centre Infirmary Building. Occasionally, a nurse will smile or bring him lunch on a tray but, for the most part, he is invisible.

Mr. Young, 94, has Parkinson's disease. He was admitted to hospital June 12, after he collapsed at home. He had pneumonia, which was treated and, a few days later, he was discharged – at least technically.

Mr. Young's spouse is not well enough to care for him at home, and he ended up on a waiting list for long-term care.

So here he sits, by default, living in a hospital ward dedicated to acutely ill patients.

"It breaks my heart to see dad like this," says his daughter, Brenda Joudrey. "Imagine just sitting in a hospital all day with nothing to do. That's not a life; it's barely an existence."

According to the Canadian Institute for Health Information, there were, at last count, 6,671 patients in Canada listed as "alternate level of care," or ALC, an Orwellian euphemism used to describe patients stuck in this care limbo – too well to be in hospital, not well enough to be at home alone, and no place at the long-term care inn.

One study, conducted by Pamela Jarrett, a geriatrician at Horizon Health in Saint John, found that patients tend to be stuck in this state of "transitional care" for a long time – a median of 182 days, ranging from five days to a mind-boggling 6,852 days (that's 18.7 years).

Mr. Young is one of the lucky ones. A week after a visit from a journalist, he learned he would be getting a spot in long-term care – after more than six months in hospital.

The ALC problem is not unique to Canada – many countries' health systems are struggling to adjust to an aging population, soaring dementia rates and getting the proper balance of hospital beds, long-term care beds and home-care services – but the magnitude and the perseverance of the issue is uniquely Canadian.

In some provinces, as many as one in three hospital beds are occupied with ALC patients. For the most part, they are scattered about various hospital wards and hence invisible.

In places such as New Brunswick, entire hospital wards have been transformed into de facto nursing homes, with much higher overhead costs (on the public dime), but often without the services offered by nursing homes, such as cozy rooms, dining halls, recreation, social outings and help with daily living activities like laundry, grooming and toileting.

"Families see a real deterioration of their loved ones when they're ALC," says Angus Campbell, executive director of Caregivers Nova Scotia.

"One recipient hasn't been outside for nine months," he adds, reading from notes received from caregivers.

"There are a lot of complaints about bed sores, loss of mobility because there's no physio, mental decline, not eating because there's no help. The story Brenda tells about her dad is one we hear time and time again – the same or worse," Mr. Campbell says.

He pauses for a moment and adds: "They're really the forgotten people of the health-care system."

To add insult to injury, once hospital patients are "discharged," they have to pay for their hospital bed, with daily rates ranging from $33 to $110, adjusted for income.

Mr. Young, for example, was billed $1,021 a month by the hospital – the same amount he would pay in a nursing home, but without any amenities or attention.

Like many family members with loved ones in ALC, Ms. Joudrey was reluctant to speak out because she has mixed feelings about his predicament.

"Listen, dad's safe here, and he wouldn't be at home, so it's the lesser of two evils," she says.

And while it's frustrating, Ms. Joudrey stresses that she bears no ill will toward the staff or the hospital. "The nurses are fabulous. They do the best they can, but their job is to care for really sick people, not tuck people in. This isn't supposed to be dad's home."

What angers her is policy-makers' failure to solve this decades-old problem.

So isn't the obvious answer to build more spaces in long-term care?

"No, it isn't," says Ken Rockwood, director of geriatric medicine research at Dalhousie University in Halifax.

"Building more beds will simply encourage more bad behaviour."

Dr. Rockwood says that living in a hospital is very bad for a person's health, especially if they are frail and suffer from dementia. (And one study found that 63 per cent of ALC patients have dementia.)

"Bad food, poor sleep, lack of movement, no stimulation, you can't wear your own clothes, you don't go outside, you can't even pee on your own. The whole situation erodes personal dignity," he says.

Having patients living in hospital beds – where they are often given the derisive label "bed-blockers" – also has a domino effect that impacts hospital operations and patients across the board, from frequent cancellation of elective surgery (because there are no beds for recovery) through to patients festering on gurneys in the emergency department (because there are no beds to admit them). To complicate matters further, there's really no incentive for hospitals to clear the decks of ALC patients; if they do, the beds will be filled by patients who require more care, and they will lose revenue.

Dr. Rockwood says the high number of ALC patients is just one symptom of a fundamental societal problem – the failure to adapt to an aging population.

"When frail elderly patients show up in the ER, we ask: 'What the hell are they doing here?' What we should be asking is: 'What the hell are we not doing that they ended up here?' "

Dr. Rockwood says a lot more care needs to be offered where people live, in the community, including bolstering home care and managing patients with multiple chronic conditions more holistically. And the beds that do exist – in hospitals, long-term care and nursing homes – have to be used more appropriately.

For example, one reason that people remain stuck in ALC purgatory for so long is that care facilities can cherry-pick the patients they accept, so they try to avoid those who require more care, such as those with dementia and multiple chronic illnesses.

In other words, those most in need of institutional care often have the most difficulty accessing it.

"Most Canadians think that care is going to be there when they need it, but that's not always the case," Ms. Joudrey says.

"Some people like my dad end up in nowhere land – not where he wants to be, home, and not where he needs to be."

Ms. Joudrey's hope was that her dad would have a place in long-term care by Christmas, and her prayers were almost answered.

The family has been told he'll be transferred next week.

Now, her wish is that the move won't be too stressful and his health will improve, and that "he will gain back some of the things he lost in the isolation of waiting in ALC."