By Ryan Sabalow and Jason Pohl, The Sacramento Bee, May 26 2020
Marilee Flannery has only seen her husband, Steve, twice in the past two months. Both times were fleeting conversations over video on her phone.
He’s at a locked-down Citrus Heights memory care facility for those with Alzheimer’s and dementia. The facility has banned visitors in hopes of keeping out the new coronavirus, which has disproportionately killed tens of thousands of residents in nursing homes, assisted living facilities and other long-term care centers.
Because of the disease, Steve, who turned 68 on Sunday, struggles to learn the steps necessary to stay on the line with her.
“ ‘Oh, he’s so handsome,’ ” she remembers thinking when she saw him for a few brief seconds before he got confused and put the phone to his ear. “He looked so good. That was kind of tearful for me. But at the same time, I appreciated that — that I was able to see him. It meant a lot to me.”
Some fear it may be years before Flannery along with the 400,000 other Californians in long-term care homes are able to visit with their loved ones in person. They must watch on TV as the rest of California comes out of lockdown and gathers again in parks, restaurants and family homes.
Now, those anxious families, along with elder-care experts, are questioning whether the severe lockdown of senior homes should be eased. The risk of keeping residents in isolation is becoming as perilous as the disease itself, they say, pointing, to some European countries that have begun to allow limited visitation at long-term care centers.
Nursing homes account for 1,434 deaths in California, about 40 percent of the state’s total. An additional 290 people in assisted-living facilities, like the one Flannery is in, have died, primarily in residential care facilities for the elderly. Roughly half of California’s known COVID-19 deaths come from these homes under the umbrella of long-term care.
Last week, the federal government released guidelines that say limited in-person nursing visits can resume after 28 straight days of the entire staff and all the patients testing negative for the virus. The guidelines don’t say how the testing should happen or who should pay for the staggering testing costs, estimated in the billions, leaving a massive financial burden on facilities and counties as residents remain locked in limbo.
“What that means, practically, is going forward for the next few years: There will be no visitors,” Mike Dark, a staff lawyer for California Advocates for Nursing Home Reform, said last week in an online forum hosted by the non-profit newsroom CalMatters.
On Friday, the Trump administration released $4.9 billion to skilled nursing facilities to help fund testing capacity, buy equipment and cover other expenses related to the pandemic. While it will help, the nursing home industry says it’s not nearly enough to cover the costs of the outbreak. The industry had requested $10 billion. Weekly testing for patients and staff in California alone would cost more than $1.8 billion each year, based on industry estimates.
Meanwhile, no federal funds so far have gone to assisted living facilities, like Flannery’s, which are regulated separately. At assisted living facilities, state officials have given little indication that their lockdowns that have been in place since April 2 will be lifted any time soon.
The uncertainty worries the officials who serve as official advocates for those in long term care.
“We’re all feeling all the same kind of frustration of just not knowing when we’re going to get back into these places,” said Joseph Rodrigues, California’s Long Term Care Ombudsman.
His patient advocates have been banned from nursing homes just like everyone else.
Who’s in control of nursing homes?
When it comes to nursing homes, industry leaders say the state and federal governments don’t have nearly the testing capacity to carry out the hundreds of thousands of tests the federal government suggested under last week’s guidelines.
And, even if they did, there are unanswered questions about who will pay for all of them. Adding to the confusion is the federal government oversees nursing homes, but state officials and county health departments in California are determining when businesses can open, sometimes offering mandates and sometimes offering guidance.
It’s unclear what — if any — penalties might follow for those who choose to open up early.
Hopefully facilities won’t rebuff local and state guidelines and forge their own path, said Sergio Landeros, program manager with the state’s Long-term Care Ombudsman Program, who represents Sacramento and surrounding counties.
“I don’t necessarily think that facilities across the nation and other states are going to do whatever they want,” Landeros said Thursday. “Because that’s not smart. And at the end of the day, they have a business to run to make sure that their residents are safe.”
Also factoring into the calculus about reopening: the risk of lawsuits and criminal investigations. Prosecutors are already probing facilities in Contra Costa County and Alameda counties where several residents died. Outbreaks after reopening could prompt additional criminal investigations, civil lawsuits and heightened scrutiny from inspectors with the California Department of Public Health and Department of Social Services.
The state’s nursing homes have been arguing that caregivers need immunity from liability during the coronavirus outbreak, saying the crisis has put an incredible strain on their resources. They say it is forcing them to make extraordinary decisions that they wouldn’t otherwise have to, putting them at risk of violating care standards that were written without thought to a pandemic.
“Sadly, in the coming days and weeks, they will face wrenching, life-threatening decisions in managing scarce resources amid arduous conditions,” nursing home and hospital industry officials wrote in a April 9 letter to Newsom, who hasn’t yet acted on the request.
Staggering costs for testing, PPE
The American Health Care Association and the National Center for Assisted Living estimate it would take close to 3 million tests to test every nursing home resident and staff member in the U.S. just one time — at a cost of $439 million. In California, that translates out to 242,540 one-time tests, at a cost of $36 million.
Weekly testing in California would cost more than $1.8 billion each year, based on those estimates.
The numbers staggered Rodrigues, California’s Long Term Care Ombudsman.
“Where is this money going to come from?” he asked. “How are we going to do this? How are facilities going to do this?”
Some want the federal government to pick up more of the costs, beyond the $4.9 billion the Trump administration released on Friday.
A Democrat Central Valley lawmaker, Josh Harder, introduced legislation last week that would direct the federal Department of Health and Human Services to contract with private test producers to provide the necessary number of tests to nursing homes nationwide.
The federal government would front the cost of testing, not the nursing homes themselves. Harder’s district is home to the Turlock Nursing and Rehabilitation Center, which has reported 18 coronavirus deaths as of Wednesday and more than 100 positive cases.
Harder’s bill provides no estimates for how much the program would cost taxpayers.
Last week’s federal guidelines said that along with ramping up testing, nursing homes need ample “personal protective equipment and essential cleaning and disinfection supplies to care for residents.”
But there’s not nearly enough personal protective equipment (PPE) such as gowns and masks and gloves, said Craig Cornett, CEO of the California Association of Health Facilities.
“We’re not there in terms of having adequate PPE yet,” Cornett said during the CalMatters forum last week. “It’s just not there yet. The supply chains are rebuilding slowly.”
It’s unclear how much equipment California has obtained has gone to long-term care facilities — the state dashboard for supply distribution lists only supplies given to hospitals.
Europe allows visits. Why can’t we?
Dark, the advocate for nursing home reform, said the risk of families not being able to see their loved ones is beginning to outweigh the risk of them contracting the disease.
“The problem is those visitors weren’t just there for moral support,” Dark said in the CalMatters forum. “Often they were providing care. They were brushing teeth. They were making sure their loved ones were hydrated and fed and that there are no bed sores. … When we cut off all visitors, we cut off a key layer of oversight those people enjoy.”
He urged California to take the lead of countries like France, Belgium and Germany that have allowed nursing home residents to have visitors.
Belgium allows one visitor — in good health — per resident. Berlin allows nursing home patients to receive one visitor for up to one hour a day. France is allowing two family members to visit any loved ones in nursing homes, so long as they’re wearing protective gear. One nursing home in the Netherlands built a “visitor cabin” where residents could see loved ones separated by glass.
But other countries such as Sweden have continued to keep facilities locked down. Like in California, up to half of all coronavirus deaths in Europe are in long-term care facilities, according to the World Health Organization.
For countries that allowed them to open, the choice was clear.
“People can die of loneliness,” Belgian Prime Minister Sophie Wilmes told her parliament last month. “Sustained isolation has consequences.”
Even before the pandemic lockdowns, studies have found that nursing home residents suffer profound levels of loneliness, which was associated with worse health. A 2017 Finnish study found that residents who described feeling lonely had higher rates of developing disabilities, poorer cognitive function, depression and died at greater rates.
Dr. Michael Wasserman, president of the California Association of Long Term Care Medicine, said California has “reached a tipping point where the risk of social isolation is starting to meet up with the risk of the virus.”
“I think we’re very short-sighted if we keep the mindset of keeping (facilities) completely locked down,” he said during the CalMatters forum.
He urged California officials to forge ahead with a plan that allowed for visitation, even if it ran counter to the federal government’s guidelines.
But Cornett said the combined lack of testing and PPE, as well as a haphazard approach to testing across the state — with some counties having more resources than others — makes him uncomfortable with forging ahead too soon.
“There’s just too much risk,” he said.
Missing the human connection
The state regulates assisted living facilities like Flannery’s separately from nursing homes. Since April 2, they’ve been on lockdown more strict than even what nursing homes have to abide by.
At nursing homes, families are allowed to make “compassionate care” visits, such as when a patient is about to die.
That’s not permitted under the state’s assisted living regulations. Under those orders, only three types of visitors are allowed: Those providing payment to the facility, an official working under a court order or a government oversight official such as a member of Adult Protective Services or an ombudsman.
In a conference call with assisted living providers on Thursday, officials with the state’s Department of Social Services offered no plan to allow visitation, said Jody Spiegel, another staff attorney with California Advocates for Nursing Home Reform who was on the call.
But they said families might be able to work with the state and county health departments on visits on a “case-by-case basis,” Spiegel said.
“They were not talking about any systematic relaxation of visitation, although we have been urging them to do so,” Spiegel said.
The statewide visitation restriction is set to expire June 30.
“The department continues to issue new guidance as the state follows the governor’s stages for modifying the stay-at-home order,” DSS spokesman Scott Murray said. It will review that guidance “as necessary.”
Memory-care patients, like Flannery in the Citrus Heights facility, particularly depend on interaction with their loved ones to keep them grounded in reality, Spiegel said.
“Families are the anchor,” she said. “They’re the memory unlock for these people. … Speaking with the family member just opens the door to serenity and calmness and happiness because that’s where all the pleasant memories are. So it’s just horrible from a mental health point of view.”
For her part, Marilee Flannery said she’s ready to do whatever it takes to be able to visit her husband again, including getting a swab jabbed in her nose every so often to be tested.
Flannery believes he’s getting good care from the facility, but she’s still worried, and she’d grown so used to seeing him every couple of days before the pandemic.
“I feel so responsible,” Flannery said. “I’m the one who is his guardian in a sense, so I want to be able to check on him, I want to be able to see how he’s doing. I want to take him to get his hair cut. That kind of thing.”