By Paula Span, NY Times, August 14 2020
Three years ago, Cathy Baum helped both her mother and her mother-in-law move into memory care in an assisted living facility in Reston, Va. Because Ms. Baum lived nearby, she could visit four to five days a week and keep a watchful eye on them.
“I’d check the bathrooms to be sure they’d had a shower when they were supposed to,” said Ms. Baum, 69. She stuck around at lunchtime to help cut their food or see that a staff member did. She made sure that her mother-in-law got the right clothing back from the laundry.
Then the coronavirus struck. On March 10 the facility, like nursing homes and assisted living complexes across the country, shut down and barred family visits. Ms. Baum did not see her 98-year-old mother or her 82-year-old mother-in-law until administrators again permitted visitors on June 30.
Even then, the experience proved frustrating. At first, employees escorted residents into an outdoor courtyard, where family members could talk to them over a wrought-iron fence. When the weather became too hot, the facility rigged a plastic curtain at an entrance, so that residents could sit in the air-conditioning while relatives visited.
Ms. Baum isn’t sure how much the two women understand when she, her husband or her brother try to communicate through the barrier. Cognitive impairment makes phone calls and video chats unworkable, too.
“They appear to be well,” she said, noting that the women didn’t seem to have lost weight and had visited the recently reopened beauty salon. Distanced dining room service has resumed.
But Ms. Baum is having trouble sleeping. “When I could check on things, I could go home and not worry,” she said. “Now, I can’t check.”
In the early weeks of the pandemic, a shutdown made sense to experts. “We faced so much risk,” said David Grabowski, a health care researcher at Harvard Medical School. “It was a crisis.” More than 40 percent of those who have died from Covid-19 were long-term care residents or staff members, a New York Times database shows.
Given such uncertainty about the new virus, Dr. Grabowski and others think the federal Centers for Medicare and Medicaid Services made the right initial call in banning outsiders, a policy that most assisted living facilities (which are not federally regulated) also adopted.
“We felt they were being responsive and protecting residents,” he said.
Now, a number of geriatricians, researchers and advocates — and frantic family members — fear that months of restrictive visiting policies have become injurious.
“It’s not just Covid that’s killing residents in long-term care,” said Dr. Jason Karlawish, a geriatrician at the University of Pennsylvania. “It’s the isolation, the loneliness.” Studies have repeatedly shown that isolated older adults have higher rates of heart disease, stroke and dementia and increased mortality rates comparable to those linked to smoking.
Moreover, Dr. Karlawish said, “Covid exposes a secret everyone knows” — that such facilities are chronically understaffed, with relatives often filling the gap. “The family were covert caregivers,” he said, providing not just connection and stimulation but hands-on help with dressing, walking, eating and monitoring residents’ health.
In a study Dr. Grabowski co-authored, nursing home residents with dementia received better quality care at the end of life if a family member visited regularly.
Could nursing homes and assisted living facilities start to resume family visits? Some already have, most commonly scheduling brief contacts outdoors or encounters through windows, sometimes supplemented by video chat and phone calls.
But the response has not been universal. “We are hearing that many facilities are refusing to permit visits even if they are allowed to do so,” Robyn Grant, director of public policy and advocacy for the National Consumer Voice, said in an email.
Moreover, scheduled outdoor visits don’t give family caregivers the same ability to participate in residents’ care or monitor their conditions. Suzanne Thomas, who has been able to visit her mother only through the front window of her assisted living facility near Charlotte, N.C., wonders if anyone inside remembers that her mother, who is 81 and has dementia, needs her hearing aid batteries changed every other day.
And soon, winter weather will make outdoor visits impractical in many locations, as summer heat does now in some places.
“Some have termed this isolation ‘involuntary confinement,’” said Dr. Christian Bergman, a geriatrician and internist at Virginia Commonwealth University. “We can’t continue down this path for another six months.”
In May, Medicare officials issued recommendations for state and local officials on phased reopening for nursing homes. It includes expanded visiting with masks and distancing when a home has entered Phase 3, meaning that it has had no new Covid cases for 28 days and can provide adequate testing and protective equipment, with no staff shortages.
Dr. Bergman, who heads a panel of health care professionals who are developing reopening guidelines for long-term care, estimated that fewer than 5 percent of facilities nationally have reached that point.
Thirty-four states have issued guidelines for nursing home visits and 27 for assisted living, according to LeadingAge, which represents nonprofit senior service providers. But individual facilities can decide whether to permit visitors and under what conditions.
For nursing homes, Medicare “left it to the discretion of the states, and the states essentially left it to the discretion of the providers,” said Dee Pekruhn, an executive at LeadingAge. With no central federal authority, assisted living providers arguably have more leeway, but as an industry, their approach to visiting is even less clear.
A study in 26 nursing homes in the Netherlands, demonstrating that families can visit without causing new Covid infections, has encouraged advocates. Perhaps, they say, in areas with low community infection rates, when facilities have sufficient protective equipment and testing capacity, family caregivers can be cautiously reintroduced.
But many long-term-care facilities still can’t meet those conditions. Dr. Bergman, whose group expects to publish its recommendations next month, pointed out that some still report shortages of protective equipment, particularly N95 masks in appropriate sizes. In many regions, bottlenecks in testing have so delayed results that they are useless for screening visitors.
Moreover, Dr. Karlawish said, “one thing that haunts long-term care is fear of litigation.”
Medicare vowed last month to send a rapid testing kit to each of the nation’s 15,000 nursing homes, prioritizing those with outbreaks or in Covid hot spots; so far it has allocated about 2,400. But these antigen tests produce more false negative than the slower but more reliable P.C.R. tests, experts said; facility administrators also worry about the cost of supplies the kits require.
“Providers are eager but cautious to welcome visitors and volunteers back into their buildings,” the American Health Care Association/National Center for Assisted Living said in an email. “That is why we need public health officials to direct resources — testing, PPE and funding — to long-term care on an ongoing basis.”
There’s always a reason to delay, and facilities where residents and staff members have already suffered and died from Covid-19 understandably fear a recurrence. But they could exercise judgment, Dr. Karlawish said, and at least allow visitors for residents who clearly struggling with the isolation. “Nursing homes care for a group of people for whom high-stakes ethical decisions are part of life,” he said.
Almost by definition, long-term care residents have limited life spans; nursing home residents are particularly fragile. Do they so value safety over quality of life that they want to spend their last months or years separated from their loved ones? Has anyone asked them?
Ms. Baum keeps visiting her mother and mother-in-law from a distance, but she is haunted by “the idea that one of them might pass, without one of us next to them,” she said. “I don’t know what I would do.”