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Tough Ethical Questions in Rethinking Long-Term Care

‘We don’t want to make nursing homes the hell you move into before you die.’

Andrew MacLeod 12 May

Andrew MacLeod is The Tyee's Legislative Bureau Chief in Victoria and the author of All Together Healthy (Douglas & McIntyre, 2018). Find him on Twitter or reach him at .

When the COVID-19 pandemic arrived in British Columbia two months ago, visiting residents in long-term care facilities was one of the first activities banned.

Now, as the province begins to reopen, decision-makers have much to consider before reinstating regular visits.

“It’s a real tough ethical decision,” said Erin Beaudoin, the CEO of Eden Gardens, a 130-bed long-term care facility in Nanaimo that, like the majority of homes in the province, hasn’t had a COVID-19 case among residents or staff.

“It’s hard to imagine how we could start to have families in and keep people safe,” she said. “Everything right now feels like a lesser-of-evil decision. Every decision you make is what is the least amount of harm I can cause. To me the least amount of harm is continuing to not have visitors.”

On March 17 provincial health officer Dr. Bonnie Henry advised all long-term care facilities to restrict visitors to essential visits only, such as when a resident is critically ill or close to dying.

“Restricting visitors will minimize the risk of the introduction of COVID-19 into facilities and allow staff to focus on caring for residents, rather than monitoring and screening visitors,” the order said. The restriction would be hard on residents and families, Henry acknowledged, but with elderly people particularly vulnerable to the virus “in an effort to control transmission, it is essential.”

On Saturday Henry said the province has been looking at how to make visits safe for staff and residents in care homes, but for now the restriction will remain in place.

Across Canada long-term care homes have been hit particularly hard during the COVID-19 pandemic and have been the site of the majority of deaths.

In B.C. there are nearly 28,000 publicly funded long-term care beds in some 300 facilities. COVID-19 has broken out in 35 such residences and they have been home to 60 per cent of the 130 deaths from the virus in the province.

Family members unhappy with the restriction on visits listened to B.C. Seniors Advocate Isobel Mackenzie on April 26 when she said in a news conference it was time to begin thinking about how care homes could safely allow more visits.

“If the new normal is going to be in place for a year, we are going to have to find a way for people to see their spouse, their adult child that they’re very close to,” Mackenzie said. “It'll definitely be a more restrictive way of visiting, but, you know, people going a year or more without seeing their spouse or their adult children, I think is tragic.”

While the province announced that later this month it would begin carefully removing measures put in place to slow the spread of COVID-19, there was no indication of when visits to residents in long-term care might be allowed.

“The restrictions that have been placed on visitors in long-term care and acute care must continue,” Health Minister Adrian Dix said Thursday. “We know how difficult this is. Personally I know how difficult it is. My family does, and I know so many other families, understand how difficult it is.”

Noting there are still active outbreaks at 22 long-term care facilities, Dix said there has to be an effort to find other ways of connecting with residents, such as through video calls. “Of course we are working on ways to improve the situation, but that has to be done with the primary goal of ensuring the safety and health of people in long term care,” he said. “We will continue to work on this issue.”

Beaudoin at Eden Gardens, which is owned by a non-profit society and receives funding through the Island Health Authority, said that she sees both sides of the issue but wants the province to go slow.

Many of the residents have advanced dementia and would be nearing the end of life regardless of the pandemic.

“I have elders who are dying, because it’s just that time in their life, and they did not spend the last five weeks with their families,” she said. Families can visit when a resident is deemed palliative and stay until the person dies, but it’s not the same as a regular visit. “They didn’t get to go out for lunch, they didn’t get to enjoy the spring weather, they didn’t get to live any kind of life before they died.”

A year is a long time in the life of someone who is getting close to the end, she allowed. “If this goes on for a year, what’s the ethical decision on ‘why am I keeping them safe?’ I’m keeping them safe from this virus but they’re going to die while I’m keeping them safe in bubble wrap.”

But in a 130-bed facility, few residents are dying at any one time. Beaudoin said, “My responsibility is the 129 other people.”

Volunteers were restricted in the facility around the same time as families were, and Beaudoin said her preference is for the volunteers to return first.

“Volunteers I direct, I train, I can fire essentially if they don’t follow the rules,” she said. “What do I do if a family member comes in and they don’t follow social distancing? Or the elder doesn’t understand the social distancing?”

It’s best to wait until visiting can be done safely, she said.

About 160 people work at Eden Gardens and Beaudoin said it’s a strong team who have been working hard during the pandemic. People are stressed and their patience is low, but they are getting through and the residents are healthy, she said.

She’s been managing the facility for 18 months, coming to it after running a private post-secondary college and with a background in hospitality, experience she says gave her fresh eyes on how long-term care is delivered.

“This COVID pandemic has just highlighted all the ways we need to change,” Beaudoin said. “Hopefully it brings us into a new normal.”

For example, securing enough personal protective equipment, such as masks, gowns and gloves, has been difficult, she said. “We’ve had some scary moments.” Prices have spiked, products have been hard to get, and staff have had to ration materials.

“Normally what would happen, and the nurses’ union is talking about this a lot, is you change your mask with every interaction that you have,” she said. “So you have nurses who have been taught for 35 years that this is how you do it, and a year ago I disciplined somebody for not doing that, and now they’re being told they can’t, so there’s some anxieties around that.”

Canada needs to make sure the supply chains for personal protective equipment are more resilient, as well as for other things the country depends on, she said.

There’s also a need for more focus on dementia training in the schools that prepare people to work in health care. “With the population of the boomers, and knowing that about 65 per cent of boomers are going to live with dementia,” she said, “there could be a lot more education on that.” According to the Canadian Association of Mental Health, dementia affects about 35 percent of Canadians over the age of 85.*

Her top priority, however is more staffing. Long-term care facilities are funded to provide 3.36 hours of direct care to each resident every day, an improvement from a couple of years ago but still not enough, Beaudoin said.

“Staffing levels would for sure be the ultimate change or solution,” she said, adding the current funding is enough to provide basic care but little else.

“We can keep people healthy, we can keep them alive, we can keep them without bedsores and things like that, but how do we give them companionship? How do we make their life worth living when we’re focused on care instead of a life of abundance and fighting things like loneliness and boredom and helplessness.”

The goal has to be to do more than “warehouse” people, she said. “We don’t want them to just move in here and wait to die. We want them to continue to live. And that’s hard to do when you’re funded at 3.36 [hours per resident].”

The industry has struggled for a long time and the issues have always come down to money, Beaudoin said.

“We don’t want to make nursing homes the hell you move into before you die,” she said. “It should be like a luxury resort where you get to do all of your fun hobbies and have a glass of wine and enjoy coffee and companionship. It should be pleasant. We owe them that at least.”

Over the next 20 years as the baby boomers age many more people will need long-term care and now is the time to build more spaces and to prepare, she said. The COVID-19 experience should spark the needed change, she added.

“I think there’s going to be a lot of good that comes out of this and I hope that the change that is addressed in long-term care means that these deaths are not in vain.”

*Story updated on May 12 at 10:20 a.m. to include information about dementia rates among Canadians.  [Tyee]

Read more: Health, Coronavirus

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