Will coronavirus pandemic prompt CA nursing home reform?

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By Ryan Sabalow, Jason Pohl, and Dale Kasler, The Sacramento Bee, April 26 2020

COVID-19 has brought havoc to nursing homes. Will pandemic end ‘warehousing’ the elderly?

Denise Plank has cried so much over the past weeks her tears have left her cheeks chafed and raw.

Her 84-year-old father, Edward, has a form of blood cancer that may kill him. She might never again hold his hand. She may never give him a hug. She might not even be able to sit in the same room with him.

He’s in a Fresno nursing home, which she’s forbidden to enter out of fears she and other guests could spread the new coronavirus to residents and staff. Given the severity of his condition, she’s unable to take him home.

So, for now, her daily visits with her father are through a closed glass window. For a few minutes each day, they talk and pray together over the phone as she stands on the concrete outside his room. Plank said she’s terrified she’ll spend the rest of his life this way — close to his bedside, yet painfully apart.

“They’re talking about two years,” she said. “I don’t know how we’re going to do two years. I really don’t.”

The Planks’ story of isolation, uncertainty, frustration and fear is shared by the families of approximately 400,000 Californians who are cared for each year in licensed long-term care facilities.

Infections were already sickening and killing hundreds of thousands of residents at nursing homes each year — even before COVID-19 hit. Now, the new and catastrophic losses have raised difficult questions about the future of nursing homes and forced a hard look at how the U.S. cares for its elderly residents in their final years.

More pointedly, has the “warehousing” of senior citizens reached a crisis point that needs urgent correction from the industry, the government, and families?

Most skilled nursing facilities have been locked down for two months to block the new coronavirus from infecting more residents. Because the elderly are disproportionately harmed by COVID-19, nursing homes were some of the first facilities officials closed to outsiders and will likely be the last to re-open.

Experts say it could be at least a year and a half before a vaccine is developed, and some fear nursing home lockdowns could last until the population is fully vaccinated.

After the first major coronavirus outbreak in the United States ravaged a nursing home in Kirkland, Wash., in March, killing more than 40 people, the virus has since infected thousands of residents and employees in nursing homes and assisted-living facilities in California.

As many as 1.3 million Americans live in nursing homes. Despite the shutdown orders, unofficial tallies indicate more than 6,700 skilled nursing home residents have died from the virus nationwide. The World Health Organization says up to half of all coronavirus deaths in Europe are in long-term care facilities.

The U.S. population continues to gray, particularly in California. There will likely be an increased demand for nursing home beds in the near future, despite the headline-grabbing horrors afflicting some places today, said Sergio Landeros, program manager with the state’s Long-term Care Ombudsman Program, which acts as an official advocate for people in nursing homes.

“They’re not going away,” Landeros said of nursing homes and other long-term care facilities. “After this pandemic, there’s going to be a much greater need.”

Researchers, employees and the state’s powerful nursing home lobby mostly agree. Children and grandchildren are simply not equipped to provide complicated, time-intensive medical care for aging or sick family members, said Craig Cornett, CEO of the California Association of Health Facilities.

“I think we have to be a little careful to read too much into this,” he said, “because, God help us, hopefully, this is a once-in-a-lifetime kind of pandemic.”

Yet nursing home reform advocates say now, more than ever, the coronavirus pandemic should force policymakers to rethink a culture of “warehousing” the elderly.

“This should cause some reflection on how we do long-term care in this country generally,” said Tony Chicotel, staff attorney for the California Advocates for Nursing Home Reform. “Putting people in large facilities, and in some cases, warehousing them, in large facilities where there’s not a lot of connection to the outside world is just the wrong model.”

A visit with masks and gloves

After a month of being cut off, Teresa Best finally got to visit her 90-year-old mother in person earlier this month. It was stressful, to say the least.

Best’s mother, who has Alzheimer’s, lives in a one-bedroom apartment at Golden Pond Retirement Home Community off Highway 50 in Sacramento.

She’d been struggling with isolation; the dining room has been closed, activities have been curtailed. The retirement home could arrange video chats, but she wants to stick with her landline phone.

“She’s pretty social,” Best said. “She enjoyed being able to go out.” Best asked that her mother’s name not be used, in part because she’s worried scammers could track her down by phone.

The situation worsened after Best’s mom suffered a compression fracture in her vertebrae. Best was allowed to visit, finally, to help her navigate a telephone consultation with a doctor.

“I was totally masked and gloved,” Best said. “She asked me why. I told her I wanted to protect her.”

Loneliness at assisted living centers and nursing homes was already a problem before the coronavirus crisis, said Jennifer Ailshire, an assistant professor at the USC School of Gerontology. It’s becoming exponentially worse now, with residents stuck in rooms or apartments and unable to visit loved ones in person.

“The residents may suffer psychological harm; they may feel isolated; they may not understand what’s happening,” Ailshire said.

Long-term care facilities, the umbrella term for nursing homes and other assisted-living facilities, are accustomed to planning for outbreaks of infectious diseases, but, Ailshire said, “I don’t think anyone really considered the idea of a complete lockdown of a facility.”

Are senior facilities adequately funded?

Institutions that house the elderly have existed in some form in America since colonial times.

English colonists imported the idea of almshouses for the elderly, mentally ill and orphans. They continued to operate in some form into the Great Depression, when ghastly reports of overwhelmed and unsafe conditions led to reforms.

The modern nursing home model began to take shape after World War II as eldercare became subsidized with federal dollars. By 1954 there were 9,000 skilled nursing facilities in the U.S. More taxpayer money led to increased scrutiny and renewed worry about staffing shortages and lagging standards.

Years of oversight demands and calls to tighten standards culminated in 1965 with the passage of the Medicare and Medicaid acts, which unleashed even more money and spurred the decades-long, back-and-forth debate about the funding, oversight and role of nursing homes in the U.S.

In the years since, skilled nursing homes and assisted living facilities have morphed into an industry that takes in tens of billions of dollars each year, much of it from federal and state tax dollars. In addition to the 1.3 million residents of nursing homes, another 800,000 live in assisted living facilities, and 75,000 are in intermediate care facilities, according to the Kaiser Family Foundation. Three million people work in the eldercare industry.

Hospitals received much of the focus among elected officials and media in the early months of the pandemic, with frantic efforts to provide protective equipment and bolster lost revenues from foregoing elective surgeries. California is spending millions to open field hospitals in urban areas in case they’re needed for a surge.

Cornett, with the California Association of Health Facilities, said the focus should be on nursing homes, where residents and staff are disproportionately getting sick and dying.

For one, a lack of timely COVID-19 tests for nursing home residents and workers is making it difficult to detect case clusters and outbreaks. Medical workers in senior facilities also are struggling to buy masks, gloves and gowns just like hospitals and government agencies, but their pockets aren’t as deep — especially in small facilities already operating on slim margins.

Nursing homes are expected to receive $1.5 billion of the $2 trillion stimulus bill. It wasn’t clear if they’ll get any help in the latest stimulus package, which passed Congress on Thursday and includes $75 billion for hospitals.

“I think there’s going to be a lot of financial challenges here,” Cornett said. “There already are.”

Mike Dark, another staff lawyer for California Advocates for Nursing Home Reform, said money has motivated too many decisions regarding nursing home operations. Better planning, increased staffing and improved oversight decades ago would have prevented pressures that profit-driven facilities now face.

The coronavirus is putting “a spotlight on what’s been an ugly underbelly,” he said.

“Long-term care facilities, in particular, are trying to squeeze a profit out of state and federal health subsidies that are so small that the only way they can be profitable is by cutting basic care, cutting things like staffing,” Dark said. “Those practices gave rise to infection-control issues, the negligence, that long predated the virus and that have come so horribly to light with this epidemic.”

The coronavirus is doing more than straining nursing home finances. Fear of outbreaks and elimination of in-person visits — possibly for months — has some considering whether to take their loved one out of the facilities altogether.

“For some people that might work,” Cornett said. “But for a large portion of that population, I think it’s dangerous, frankly.”

Cornett and others noted the complexity of medical and personal care required in nursing homes. Managing medications, ensuring people can safely move around without falling, and preventing infections can be overwhelming in normal times, let alone a pandemic.

The prospect of hiring in-home health aides might be an option for some. But that mostly for-profit industry with more than 12,000 licensed providers is not without its challenges. Many home health workers have minimal training and earn only about $25,000 annually.

The agencies they work for can range in size, and they struggle to access proper protective equipment because they don’t have the same influence and access to stockpiles that hospitals and even nursing homes have.

And the pandemic has made caring for residents in their own homes even more difficult, especially because an aide without symptoms could accidentally infect the person they’re caring for.

Landeros, the ombudsman and resident advocate, said a prolonged recession could strain already cash-strapped families, especially those that remove a loved one from a nursing home. If facilities downsize, and an increasingly aging population looks for options, it could be more difficult to find space at a facility.

“There’s going to be a new normal,” Landeros said. “It’s going to shine a light that these nursing homes are in great need.”

‘Nobody can come in here to visit us’

It’s those types of financial pressures and quality-of-care concerns that have some saying now that it’s time for a tectonic shift. But a century’s work isn’t likely to be undone, health experts say. A move to in-home family care isn’t possible without major changes in how public and private money is allocated for eldercare, they say.

Jessica Lehman, executive director of the San Francisco-based Senior and Disability Action, said America’s system gives families few options. Even if family members can provide care, employers are unlikely to grant enough family medical leave and other long-term economic support to make it practical.

“Do we have a good system? We don’t. I know from first-hand,” said Lehman, who is disabled and uses a wheelchair. “We don’t have a good system of having enough personal care attendants or caregivers to do the work, people who are paid enough that want to do this work so that it can be sustainable.”

Francis Rodgers, chief executive of the California Armenian Home of Fresno — whose skilled nursing facility, the Vineyards, is home to Plank’s father — said having families care for elderly relatives would be ideal, but not likely to happen in America.

“I think it would be great if it changed our society’s views on how we care for elders, because other societies don’t care for their elders in nursing homes,” Rodgers said. “But I highly doubt that will change because everybody is so busy, and once people get into their high-80s and 90s, many of them need help with their activities of daily living.

“And if their kids are working like most people are, that’s pretty hard to take care of someone who needs total care.”

In the long run, the pandemic will prompt long-term care facilities to re-evaluate how they care for residents and how train their staff to help cope with isolation, said Donna Jensen, an associate professor of gerontology at Sacramento State.

“Long-term care is going to be more than just providing bed and meals,” Jensen said.

Large-scale eldercare operators say they’re doing the best they can to encourage socialization in the COVID-19 pandemic — mostly through technology.

Eskaton, a major chain of senior care homes serving more than 10,000 residents in the Sacramento area, has been rushing more communication tech into its facilities, said Therese ten Brinke, the company’s director of strategic initiatives.

Residents and families use the Eskaton app to communicate with each other. They also can sign up for a phone call or video chat with a chaplain. Alexa smart speakers are being installed in residences, so people can make a phone call to one of their neighbors by just calling out their name.

But, for some, phone calls are proving to be no substitute for human companionship.

When it’s time for dinner, Don Gerth borrows his wife’s walker and trudges down to the dining hall at Eskaton Village Carmichael.

He picks up the meals they’d ordered. Then he balances the two bags on the walker and heads back to the two-bedroom, 1,300-square-foot apartment they share on the 37-acre “continuing care retirement community,” which includes a skilled nursing ward.

That’s about it for social interaction these days.

“There are no activities going on. All the usual stuff has been canceled,” Gerth said of life at Eskaton. ”We’re sort of isolated within the building.”

Gerth, 91, the retired president of Sacramento State, and his wife Beverly moved to Eskaton just two weeks before orders from Gov. Gavin Newsom meant the dining hall was closed and all social gatherings were halted.

Now, the highlight of their day is when their daughter, Deborah Hougham, delivers muffins for breakfast.

Not that they get to see her.

“She has to deliver them to the gate down in front, hand them over to the guard,” Gerth said. “She can’t get in here. … Nobody can come in here to visit us.”

Care from ‘someone who loves you’

Other countries, particularly in Latin America and Asia, have a different view of caring for the elderly. In those countries, it’s customary for large extended families to have the elderly living under the same roofs as their grandchildren.

Chicotel, with the California Advocates for Nursing Home Reform, and other reform-minded supporters acknowledge phasing out the “congregate living model” is easier said than done. The current system evolved in an effort to keep staffing levels low and save costs.

Instead, Chicotel said, the focus should shift to in-home health services and reimagined “community-based” care facilities that are actual homes with a handful of residents cared for by trained specialists instead of the hospital-like settings that so many nursing homes are now.

He’d also like to see money go directly to families in the form of a voucher program and training for family members to learn care for their parents and grandparents.

“Look, the highest quality care you’re going to get — all other things being equal — is going to come from somebody who actually loves you. That would be your family and your friends, most likely,” Chicotel said.

“Putting people in institutions should always be the last resort, and I think this (pandemic) really reinforces that. You do create disconnections and you get farther and farther removed from the people who actually care about this person.”

The coronavirus pandemic has sharpened the differences between how the elderly are treated in America vs. other nations.

The U.S. government recommended closing all nursing homes to visitors, “with exceptions for compassionate care,” such as when a loved one is close to death.

But some European countries have eased visitation restrictions slightly to reduce the pain of isolation in elder care homes.

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.

“The risk of the virus will not disappear as long as there is no vaccine. We cannot condemn these people to never see their loved ones again,” Marc Bourquin of the Hospital Federation of France, told the Associated Press.

Missing her father

Rodgers, who runs the nursing home in Fresno, said he’s been stunned by the isolation during the COVID-19 pandemic. It’s been equally stunning to residents and their families.

“I never thought in 40 years in this business I’d be banning visitors,” he said.

Plank, the Fresno woman who visits her father daily through his window, said it’s not just the isolation from her dad that’s making their lives difficult. Not being able to visit his caregivers in person is, too.

Before the pandemic, if she couldn’t get answers about treatment or an appointment or some other aspect of his care over the phone, she would normally just go into a doctor’s office and pester them until she got what he needed.

Now, she said, the health care system can put her off indefinitely.

“It’s very easy for them to send you in a voicemail loop forever, and you don’t get any answers,” Plank said. “It just definitely adds to the feeling of helplessness and terror.”

Yet when it comes to her father’s care at his nursing home, Plank said she can find no fault in it.

She says the staff at the California Armenian Home is doing the best they can under trying circumstances, and they’re providing the care than she couldn’t if she tried to take him home.

So for now, Plank and her father are permanently separated by the glass.

“I don’t know what the answers are because I would never forgive myself if I let any kind of germ loose in that place. I couldn’t go on,” she said. “But this does feel like some horrible, primitive science experiment. … It’s awful.”