What to Do About Your Relatives in Long-Term Care During the Coronavirus Pandemic

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People who live in nursing homes long term—usually older adults, many of whom have significant underlying conditions such as heart disease, lung disease, and diabetes—are particularly vulnerable to experiencing serious complications from COVID-19. And since the beginning of this epidemic in the U.S., some of the most severe clusters of the disease have been in long-term-care centers.

“Coronavirus in a nursing home can be like fire through dry grass,” New York Gov. Andrew Cuomo said at a press briefing.

The Centers for Medicare and Medicaid Services (CMS) since mid-March has instructed nursing homes to stop admitting most visitors and non-essential personnel, in an effort to prevent the introduction of COVID-19.

But the potential for the infection to quickly wreak havoc once it takes hold in this setting, plus the inability of families to visit their relatives and check on them in person, has many wondering whether they should bring a parent or loved one back home to wait out the storm.

It's difficult for families to know how to react to the ongoing news of outbreaks in nursing homes across the country. By mid-April, for example, about a quarter of reported COVID-19 fatalities in New York State were in long-term-care facilities. Just a month after two cases of the coronavirus first appeared in a nursing home in Virginia, 45 of the 160 residents had died, according to The New York Times.

The decision can be fraught with complications. Is being on lockdown in a nursing home safer than being in an imperfectly quarantined home? Can family and friends provide everything that's needed? And what are the financial implications of bringing someone home from a nursing home?

Of course, there’s no one correct answer to these questions. “People need to respect the wisdom and wishes of their parents, and trust their gut instincts on what is the right decision based on the best current news and evidence,” says Olga Jarrín Montaner, Ph.D., R.N., an assistant professor at Rutgers School of Nursing.

We consulted a number of experts to find out what families should take into consideration before pulling a loved one from long-term care—plus what you can do to help take care of relatives from afar.

Weighing the Risks and Benefits

If you’re thinking about bringing a loved one home, here are several questions to consider first.

Can you ensure a safe level of social distancing?
Given the frightening outbreaks that have occurred in nursing homes, it might seem like someone would have a lower chance of catching COVID-19 in a private residence.

But that might not necessarily be the case, says Ashley Z. Ritter, Ph.D., a nurse practitioner and a postdoctoral fellow in the National Clinician Scholars Program at the University of Pennsylvania. People may be coming and going in your home, including, for instance, young children who might not be as practiced or reliable at covering sneezes and coughs or regularly washing their hands. Your family might not be able to avoid trips out to the grocery store. Or someone in your household might be an essential worker going out every day. Any of those factors can add to the risk of an infection unwittingly brought home.

Nursing homes are being directed not to allow visitors; to regularly screen all staff, visitors, and residents for signs of disease; and to require all staff interacting with residents to wear facemasks and other protective equipment, among many other directives. In our homes, it’s likely that we don’t practice infection control as rigorously as is done in many nursing homes, says Sheryl Zimmerman, Ph.D., professor and co-director of the Program on Aging, Disability, and Long-Term Care at the University of North Carolina at Chapel Hill.

Is the nursing home enforcing effective infection control?
Nursing homes should have protocols in place for controlling infection outbreaks, Ritter says. And although this pandemic is much more severe than seasonal flu, nursing home staff should be trained in preventing the spread of disease.

Still, it’s important to keep in mind that some nursing homes violate these protocols every year, and infection control violations are common. You can use Medicare’s Nursing Home Compare tool to look up nursing homes and find recent inspection reports. Look for violations on the requirement to “provide and implement an infection prevention and control program.”

With COVID-19 spreading, nursing homes may also be short-staffed and struggling to find appropriate protective equipment (such as masks) for residents and employees.

Ask your contact at the nursing home whether the facility is abiding by the infection control guidelines from CMS, such as designating separate staff teams to care for residents with COVID-19 and those without.

Once a facility has a confirmed case of COVID-19, though, says Joseph Ouslander, M.D., a professor of geriatric medicine at Florida Atlantic University, it may be unwise to bring a resident home. That person could already be unknowingly infected and may put other loved ones and caregivers at risk.

Can you provide the level of care your loved one needs?
The California-based nonprofit Institute on Aging recommends considering a few key factors when deciding whether to bring a relative home from a nursing home—applicable at any time, not only during a pandemic. These include whether you can manage your relative’s medications, whether you’ll be able to get them to all their necessary regular medical appointments, and whether you can provide them all the help and services they’ll need.

Though both low- and higher-tech solutions are available for medication management, the problem of getting relatives to their regular medical appointments might be trickier than usual now, Jarrín says. That’s because healthcare providers may in some places be restricting who can come into hospitals and medical centers, in order to limit the potential for any infection spread. That might mean a spouse or caregiver would be unable to sit in on someone’s appointment and take notes, ask questions, and receive directions for care. Investigating the use of telehealth for part of your loved one’s care can be useful, Jarrín says. Telehealth may also be necessary if your loved one is in a nursing home far away from where you’d be bringing them home to, so you may want to make sure ahead of time that their doctor can see them virtually.

At home, it’s important to be realistic about whether you can match the level of care your relative needs and is receiving in their nursing home, says Liz Barlowe, an aging life care manager and board president of the Aging Life Care Association. “Particularly for people coming from a skilled nursing facility—they're in there because they needed a nurse,” she says.

And hiring help presents its own challenges—some agencies may have a harder time than usual finding enough providers, for one thing, in part because home-care workers may, like everyone else right now, want to avoid too much contact with a lot of different people. And having people come in and out of the house to provide care could raise the risk of infection being transmitted, just as visitors to a nursing home do.

For this reason, if you do decide to try and find home health care, Barlowe advises checking with agencies about their infection control policies upfront. Caregivers should be checking their temperature and evaluating themselves for any potential COVID-19 symptoms before coming inside your home, changing into clean scrubs once they arrive, and wearing gloves and a mask throughout their shift, Barlowe says. And ask agencies how many clients your potential caregiver has right now. “We know the less contact with people, the better,” Barlowe says. “I would not accept a caregiver visiting multiple clients.”

What costs are involved?
There’s a lot of variation in what Medicare, Medicaid, and private insurance might cover when it comes to home health services. Tools such as the U.S. Administration on Aging’s Eldercare locator, Medicare’s search tool for home health agencies, and the National Association for Home Care can help you locate resources. Barlowe also recommends enlisting the help of an aging life care professional, who can help you navigate the resources available to you locally and put together a care plan for your relative.

And be sure to check on what might happen to your ability to resume your relative’s care in a nursing home once this crisis is over. Once you take them out, it might be difficult to get them back in, or to resume coverage for the costs of care.

What’s your backup plan?
Keep in mind, Ritter advises, that whatever plans you make, you should expect that you may need to keep them in place for months, because the pandemic isn’t going away anytime soon.

And you should have a backup plan in place for what happens if your loved one’s primary caregivers—whether that’s you, other family members, or health workers you hire—get sick and become unable to care for them. “Do you have a second and third line of planning to take care of that individual in the home?” Ritter says.

Special Considerations for Assisted Living

If you have a loved one in assisted living, rather than a nursing home, the risk vs. benefit balance might be somewhat different. For one thing, Zimmerman says, assisted living facilities are subject to less regulation around infection control procedures than nursing homes are, so it’s important to find out what safeguards your loved one’s facility has in place.

And in general, assisted living facilities vary more widely than nursing homes in terms of the level of medical services they provide and the amount of medical staff they employ. As more and more people start getting sick with COVID-19, that could deplete assisted living staff even more.

Zimmerman recommends checking in with the management of your relative’s assisted living facility about their infection control practices and staffing levels. If the facility isn’t making changes that would ensure social distancing among residents—such as discontinuing with group meals—that should be cause for concern, she says.

Additionally, Zimmerman says, “If there was some serious concern that, given insufficient staffing, the basic needs of my family member could not be met, because there were not sufficient staff there, then I would certainly start to think about what would be the best way to take care of my family member’s welfare.”

Care for Loved Ones From Afar

If you decide you don’t have the resources to bring your relative home and keep them safe, there’s still plenty you can do to take care of him or her from afar. Regular phone calls or video chats are critical for virtually checking in on your loved one.

Zimmerman recommends making these check-ins do double duty, and keeping an eye out for any signs of illness that overtaxed staff may not yet have noticed. Stay in contact with your relative’s doctor so that you can alert him or her in case you notice anything worrying.

Last, if you haven’t clarified your loved one’s end-of-life wishes, have that conversation. “It’s more important now than ever to review and revise advance directives and physician orders for life-sustaining treatment (POLST) forms that clarify wishes regarding life-sustaining treatment options including hospitalization and ventilator,” Jarrín says.

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