What to consider before removing a loved one from long-term care

TORONTO — With hundreds of long-term care homes across the country grappling with outbreaks of COVID-19 among their residents, many concerned families are considering whether to remove their loved ones from these facilities to protect them from infection.

As the spread of the virus grew into a worldwide health emergency, public health authorities and medical experts have consistently warned that seniors are a high-risk group for serious complications or death from the disease.

In Canada, the majority of deaths from COVID-19 have been among those who are 80 years or older, according to the country’s chief public health officer Dr. Theresa Tam.  

The increased risk to seniors is one of the reasons why Liz Grogan decided to pull her 98-year-old mother out of the Toronto-area long-term care home she’d been residing in for the past two years.

In mid-March, Grogan said she decided to bring home her mother, who has Alzheimer’s disease, after she heard about seniors dying from the disease in nursing homes in B.C. and Washington state.

“The reality was beginning to sink in. This could happen to mom. After all, at 98 she is most vulnerable,” Grogan told CTVNews.ca on Thursday. “I started to cry when I thought ‘Was throwing her my air kiss and my air hug to her and saying I love you from a distance, the last time I would see her?’”

Since then, Grogan and her mother have shared her small apartment where she has become “chief cook, bottle-washer, sanitizer, nurse, and caregiver.”

While Grogan has been able to provide her mother with the care she needs, something she has done in the past, it’s not always that simple for many families still trying to weigh their options.

HOW SAFE IS THE FACILITY?

Dr. Samir Sinha, director of geriatrics at Sinai Health System and the University Health Network in Toronto, said he understands that people are concerned about their loved ones’ safety in long-term care homes.

“I think the challenge is, is that we have over 400,000 Canadians who are living in these long-term care homes and they’re incredibly vulnerable,” he told CTVNews.ca during a telephone interview on Thursday.

Before people rush to take their loved ones home, Sinha said they should consider four key safety measures to gauge how safe the facility is for them at this time.

“I would be doing a disservice if I told people that if these four things aren’t being done, that your loved one is absolutely safe,” he said.

Is the facility restricting non-essential movement?

Sinha said the first thing people should take in to account before removing their loved one from a nursing or retirement home is if that facility has restricted all non-essential business and visitors yet.

“That basically means that we’re not allowing families or a family member to visit a loved one in the home unless they literally are dying,” Sinha explained.

If there is a lot of foot traffic in and out of the home, Sinha said there will obviously be a greater risk of COVID-19 transmission among the residents living there.

Are staff members only working in one long-term care home?

The next thing to consider, according to Sinha, is whether the staff at the long-term care home are only working at one facility to decrease the risk of infection. Unfortunately, Sinha said this is difficult for a lot of homes to implement because many personal support workers (PSW) only receive part-time hours and wages, often without sick benefits.

Sinha said that B.C. is so far the only province that has ordered staff to work in only one home. To achieve this, the province is offering full-time wages and benefits to workers to supplement the lost income. Sinha said that Ontario has recommended this for its long-term care homes, but it’s not a requirement yet.

Are all visitors and staff members wearing masks?

With more evidence that community and asymptomatic spread of the novel coronavirus is occurring, Sinha said all long-term care homes should require everyone in the facility to wear a mask at all times.

“We should be masking all visitors and staff in these environments to prevent the asymptomatic transmission of this virus from staff to the residents and staff to each other,” he said.

How much are they testing?

Lastly, Sinha said families should see if the long-term care home where their loved one is living is testing and isolating people who are asymptomatic, but were likely exposed. He said this should apply to both staff and residents.

Sinha said it’s important that all long-term care homes across the country implement these measures to ensure they’re safe for everyone because a lot of families are unable to care for their loved ones at home.

“I really think that every home across Canada should be able to do those four things and until they’re unable to do all four things, I’m not going to look another person in the eye and lie to them and tell them that ‘I think your family member is absolutely safe,’” he said.

HOW SAFE IS YOUR OWN HOME?

While families should look at the safety of the long-term care home where their loved one is residing, they should also consider their own home and capabilities before they commit to caring for someone themselves.

Dr. Barbara Liu, executive director of the Regional Geriatric Program of Toronto, said it’s a “big decision” that families should consider carefully.

“The people that are living in long-term care homes have high care needs and that’s primarily why they’re in the long-term care home,” she told CTVNews.ca during a telephone interview on Thursday.

Do they have physical care needs?

Liu said seniors often have physical care needs for mobility that can sometimes require one or more people to assist them.

“They may need a mechanical lift to get from the bed to a chair or to a wheelchair. Do they need help with bathing, toileting, dressing, feeding? Do they have a special diet that is required? Do people know how to feed someone who has swallowing difficulty,” she said.

There also physical considerations for the home itself, Liu explained, such as if they have trouble with stairs or getting into the bathtub.

Do they require cognitive support?

Besides their physical needs, Liu said potential caregivers need to consider whether they’re capable of caring for someone who may have cognitive difficulties, such as people living with dementia.

“Some of them have responsive behaviours, which can be challenging to manage,” she said. “Some people in long-term care homes have behaviours that make them a little bit combative or resistant to care. They may be aggressive or hitting out, there may be verbal aggression.”

Liu also said some people may be at risk of wandering away from the home and families might need to be able to provide them with continuous supervision if that’s the case.

What are their medical requirements?

Liu said families need to ensure they will be able to administer the appropriate medications or treatment to their loved one, such as pills, injections, oxygen, and dressings.

What’s more, Liu said they should also ensure they are able to monitor that individual’s health condition and access help if it changes.

“Most of the people that are living in a nursing home can’t be left at home without care. They need somebody there. It would be a 24-7 commitment,” she said. “It’s physically and emotionally a very demanding situation in terms of providing that level of care continuously.”

Are there other members of the household who may pose a risk to them?

Liu said families should factor in whether their loved one may have been exposed to the virus at the long-term care home before they take them home and if there is anyone else in the household who may pose a risk to that individual because they need to go back and forth frequently.

Have their care needs changed over time?

While some families may feel ready to take on the responsibility because they cared for their loved one before entering a long-term care home, Liu said they should take into account the possibility that that individual’s condition has worsened over time.

“What families may remember as being their level of functioning and how they were before they went in to the nursing home, may not still hold true for their condition now,” she explained. “Their care needs may be heavier than they remember.”

Will they be able to return to the long-term care home after the pandemic?

Finally, both Liu and Sinha said families should check with their loved one’s long-term care home before they remove them to ensure they will have a bed to return to when the pandemic is over.

In Ontario, Sinha said the province has mandated that seniors who are taken out of their long-term care home during the health crisis be fast-tracked to the front of the waiting list when they wish to return.

“You will not actually be at the bottom again and have to wait a few years,” he said.

While that may be the case in Ontario, residents in other provinces and territories should verify if that will be the case where they live too. 

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