When it comes to pulling a loved one out of long-term care, there's no easy answer
Balancing isolation concerns, COVID-19 risks a constant struggle
The decision to remove a loved one from long-term care and bring them home is proving to be a complicated one for families trying to balance concerns about isolation with the risks of COVID-19.
Marie Chinnatamby decided to remove her 95-year-old mother, Desiree Saverimuttu, from St. Patrick's Home in Ottawa this spring as COVID-19 restrictions kept them apart.
"She would have not died of COVID, but she would've died of loneliness. Because she's always seen us and been in our life all the time and we always visit her," Chinnatamby said.
Eight months later, Chinnatamby says she made the right decision — but it's required a lot of work. She has the support of her university-aged son, an additional private personal support worker and family members with medical knowledge who can help in the event of a crisis.
"You have to have some knowledge of how to handle [an] emergency. Like, when the [personal support workers] are gone ... I'm a backup," Chinnatamby said.
Not only is the family happy with the decision, she said, but they've released their mother's long-term care spot so that someone else can make use of it.
Risk may be higher at home
Chinnatamby's decision reflects the hard choices around long-term care being made during the COVID-19 pandemic, as people not only choose to remove family members from care facilities, but also appear more hesitant to place them there in the first place.
In the spring, Ontario's Ministry of Long-Term Care allowed people to temporarily remove family members from homes and maintain their priority on the wait-list, although not necessarily their exact spot in a particular home.
That led Dawn Stacey, a senior scientist at the Ottawa Hospital Research Institute, to develop a decision-making aid in April for families facing this tough choice.
People in long-term care often have severe and complicated medical needs, Stacey said, so the decision-making aid is designed to help their loved ones talk about whether they have the ability to support them.
The risk of exposure to the virus also may be higher at a home where family members go to school or work regularly, she said — particularly if the job is a high-risk one.
Stacey said while many initially thought they'd only be taking family members out of long-term care temporarily, that's shifting as the pandemic shows few signs of slowing down.
"We honestly did think that it was just for a few months, and now it's much more than a few months," she said. "Probably for a few families, they're making a permanent decision."
Stacey said downloads of the decision aid have been steady since summer — between 50 and 150 a day — but no longer spike with outbreaks as they did in the spring.
Admission rates have plunged
Laura Tamblyn Watts, CEO of the seniors advocacy group CanAge, said more home care supports may be needed as people hesitate to accept admission to long-term care and retirement homes.
"In the second wave, we're not seeing as many people concerned about pulling loved ones out. What we're seeing is people don't want to put loved ones — who may have been waiting on lists for years — into care to begin with," she said.
Ontario Health East said 567 people were placed in long-term care homes in Ottawa and the surrounding area between April 1 and Oct. 31 this year, compared to 1,440 during the same time last year.
Admissions may be slower in part because of new COVID-19 infection-control measures, which include mandatory quarantines and limiting residences to two people per room.
Ontario Health East said it does provide home care assistance to some people who've removed loved ones from long-term facilities on a case-by-case basis.
The health agency also said while it monitors the permanent and temporary removal of residents, it doesn't have statistics for how many people have made that decision.
