For lives worth living
ESTABLISHED1892—JOSEPH E. ATKINSON, PUBLISHER 1899-1948
In communities across Ontario there are thousands of people, once vibrant and healthy, living out their days in long-term care homes. And the term, unfortunately, can be a bit of a misnomer.
Many of the “homes” are sterile institutions more than anything approaching a comforting home.
And too often “care” means providing the very basics of life — food, shelter and clothing — rather than the social connections and emotional supports that make life worth living.
That’s never more the case than in homes where patients suffer from dementia.
What a relief, then, it must have been for the many Ontarians who fear that a dementia diagnosis might come in the future for a loved one, or perhaps themselves, to read Moira Welsh’s recent series of articles on the Butterfly program.
It’s a different, better model of care that Peel Region piloted at Redstone, a dementia unit in one home, before expanding it to others.
And it’s not the only positive model. Others are starting to take hold as people’s expectations of what care should look like move beyond simply achieving a passing grade from Ontario’s inspection system for keeping people clean, fed and safe.
In the best of these person-centred care homes, residents aren’t hustled from bed to dinning table on a schedule that has nothing to do with their desires or natural rhythms or, for much of the day, parked like cars in front of TVs.
At Redstone, efforts are made to connect residents to their past lives and interests. That’s often all they have left as the fog of memory loss and confusion wipes out the present.
In practice, that means a 73-year-old man — once a construction worker left motionless by early dementia — spent his final months dancing in his chair to the disco songs of his youth on a set of headphones.
It means that Kenroy Foxe, a personal support worker in the home, is seen as a friend, not a stranger to hit for doing his job.
“We get to know them and understand who they are,” he said. “They’re not just here in a chair, getting medicine and sleeping.”
Indeed. In her final year, Inga Cherry left her room happily to tell her stories as a young woman during the Second World War. She was 94, carrying her red pursue and happy in her belief that her memory loss was nothing more than a sideeffect from her years of smoking to look glamorous.
“Why can’t all facilities be like this?” her daughter once asked decision-makers. It’s a very good question. The knee-jerk answer is to say Ontario can’t afford it. Turning Redstone into a Butterfly home came with $200,000 in upfront costs and $400,000 in increased annual costs, mostly to pay for additional staff.
Ontario currently has 78,000 people living in more than 600 long-term care homes. Another 32,000 people are waiting for spaces, and with a rapidly aging population those figures will only grow.
It’s easy to think that the province, which constantly struggles to keep the ever-growing health care budget from truly ballooning out of control, can’t afford anything beyond the basics. But there’s another side to the Butterfly cost equation.
Staff sick days are down, anti-psychotic drug use is lower, fewer residents are falling, and social engagement is higher, according to Peel Region. Those all result in cost savings, not to mention happier lives.
And while the primary purpose of better care is to improve the lives of residents, the positive effect goes well beyond them to their family, friends and, crucially, staff.
That’s particularly important as Ontario moves ahead with expansion plans for long-term care because many homes already struggle to find, and maintain staff. The work is harried, the pay is low and the morale even lower.
That came through clearly and tragically at the public inquiry into the case of Elizabeth Wettlaufer, who murdered eight elderly patients. She was a troubled nurse with a terrible record of patient care and medication errors — and she had no trouble finding work in long-term care homes because too few nurses want to work there.
Ontario currently has hundreds of standards, rules and regulations, for long-term care homes. They’re all well-meaning and many were introduced as a consequence of neglect and tragedy in homes.
But the wonderful example of a Butterfly home also reminds us that rules are not enough. New models of care challenge the standard that so long as the paperwork is filled out, and on time, the residents are fine.
As the province moves forward with plans to refurbish and build new long-term care beds, the government should also look at whether the accumulation of standards, rules and reporting requirements is achieving its purpose: better care. Or whether it’s time to consider how to introduce some flexibility to make the most of people’s abilities — both residents and staff.
We don’t need more sterile spaces to warehouse people. We need comforting homes, along with the proper programming and staffing levels to help people really live out their final days.
The positive effect of better care extends to family, friends and, crucially, staff