En español | To understand who or what is to blame for the more than 100,000 deaths caused by the coronavirus among residents and staff of U.S. long-term care facilities between March and Thanksgiving, it’s useful to consider a devastating calamity that hit in 2005: Hurricane Katrina.
In the days, weeks and months after New Orleans was overwhelmed with flooding from the hurricane, critics pointed to the slow response from the federal government, decisions made by the city’s mayor and the state’s governor, a delay in engagement from the U.S. president, the greed and influence of private businesses, and even the stubbornness of the city’s residents as the causes for all the pain that had occurred. And many of the charges had some level of truth. But in time, two simple but profound causes were ultimately found to be the root of what happened: bad infrastructure decisions that dated back decades—in New Orleans’ case, a poorly maintained, inadequate levee system — and a storm of such magnitude that once 23 of the levees were breached, little could be done to prevent 80 percent of the city from going underwater.
Experts foresee a similar reckoning for what has been happening in America’s nursing homes during the COVID-19 pandemic. Yes, they say, fingers can and should be pointed at how elected officials, regulators, owners and others responded to the crisis. But the American nursing home industry exists as it does today because of federal laws and regulations that go back 85 years. The infrastructure these laws created, no matter how well intended, didn’t anticipate the future, nor could it foresee a health storm of this magnitude, speed and deadliness.
To fully understand the underlying causes of the nursing home debacle of the past nine months, AARP spoke with dozens of experts, from scientists and researchers to historians, doctors, nursing home staff and industry heads. The interviews revealed large and small mistakes made at every level, from the federal government to states, local health departments and individual nursing homes. Here’s what they told us.
- 1950s laws led to hospital-like settings for most nursing homes
- 1960s laws ultimately made nursing homes reliant on government funding
- Medicaid rules force many into nursing homes against their desires
“Look at it from the 30,000-foot level,” says Eric Carlson, an attorney at Justice in Aging, who testified before Congress in June on the impact of the virus on nursing homes. “If you are living in a world with potential for pandemic, which we are, it seems like bad practice to put 150 people in their 80s together in tight quarters, two to a room, sleeping 4 feet away from each other. That’s about the worst thing you can do.”
Yet that’s precisely what federal laws governing America’s more than 15,000 nursing homes have led us to. In fact, the law that created Social Security back in 1935 planted the seeds. In an attempt to keep older Americans out of public poorhouses, the Social Security Act prohibited payments to residents of public institutions; that helped launch the rise of private nursing homes.
The next law with a major influence on today’s nursing homes came in 1954. The Hill-Burton Act, which funded hospital construction, was expanded that year to provide loans and grants to build nursing homes that agreed to provide low-cost care. The law instituted the medical model of nursing homes, in which older adults are housed in institutions that resemble hospitals more than, say, a college dorm or apartment. It’s a model that carries on today.
But even more influential to the industry was the creation of Medicare and Medicaid in 1965. Medicare, the federal health insurance program for individuals 65-plus, was set up to pay for doctor and hospital visits as well as short-term stays in nursing homes. But Medicaid, which covers primarily the poor, and is funded by matching state and federal funds, became the payer for long-term care in nursing homes.
Before the launch of Medicare and Medicaid, few families struggled to pay for nursing home care, says Bruce Vladeck, an expert on nursing home policy who in the mid-1990s was the administrator of the federal agency that directed Medicaid and Medicare. Back then, nursing home care was relatively inexpensive, he says. And few people lived long enough to require it.
But as life expectancy grew dramatically in the last half of the 20th century, so did the cost of medical care and nursing homes. That created the financial hardship many middle-
class Americans face today. “The great takeoff in health care prices in this country didn’t start until the early ’60s,” Vladeck says.
The Medicaid entitlement, critics say, is most responsible for the nursing home industry we have today. Although multiple studies and surveys show that few older people would choose to live in nursing homes, such facilities have become the only viable option for those who can no longer live in their homes without paid help.
Under Medicaid law, states are required to pay for nursing home care for anyone who qualifies. States are not required to pay for the home- and community-based services that would help seniors stay in their homes. If a state wishes to provide these services, it can apply for a waiver from the federal government. Even if approved, many waivers have enrollment caps. And in some cases, waiting lists for those wanting Medicaid-covered home care are so long that people die waiting.
Making nursing homes the de facto choice for older Americans in need of care set the stage for the ravages of the pandemic, says Patricia McGinnis, executive director of California Advocates for Nursing Home Reform.
“Nursing homes are not good places for anyone except for short-term rehab,” McGinnis says. “I would hope this is a wake-up call that the system isn’t working.”
- Early pandemic decisions deprioritized nursing homes
- Months of limited testing let the virus go unchecked
Even with the flawed system in place, lives could have been saved, experts say, if state and federal officials had acted quickly to make nursing homes a priority in the early days of the outbreak.
The single greatest error of America’s response to the pandemic in nursing homes, most agree, was the failure to provide early and vast access to virus testing for residents and staff. Without testing, nursing home staff focused on isolating residents who showed symptoms of the virus, while asymptomatic residents and staff continued to spread the virus throughout the facilities.
“Nursing homes were left chasing their tails,” says Morgan Katz, M.D., an infectious disease expert at Johns Hopkins University School of Medicine who specializes in infection control in long-term care facilities.
In late February, the virus was first detected at Life Care Center of Kirkland, a nursing home in a Seattle suburb, which saw 37 deaths within a four-week span. The Kirkland case should have been a clear warning that nursing homes were at risk for outbreaks.
In response, the Centers for Medicare & Medicaid Services (CMS) directed nursing homes to ban visitors and nonessential personnel and to restrict communal activities of residents. But no recommendation was made to do more rigorous testing for the virus.
It wasn’t until May that Deborah Birx, M.D., a senior federal health official who has helped guide the pandemic response, asked governors to find a way to test all nursing home residents and workers in their states.
But implementation was left up to states, and governors scrambled to purchase tests that were in short supply. Maryland, in April, imported supplies from South Korea, while other states failed to find tests at all.
By midsummer, rapid-response tests became more available, yet many nursing homes had still not begun testing residents or staff and some still struggled to get tests.
CMS finally required nursing homes to test residents and staff in September. By then, the damage had been done. Even at that late date, some nursing homes were still experiencing test shortages and in some cases could not receive lab test results within a week.
Without widespread testing, efforts to stop the spread were doomed, Katz says.
Unlike many nursing homes, Johns Hopkins, one of the top medical institutions in the world, had both coronavirus tests and a lab to quickly turn around results. After the Kirkland outbreak, Hopkins administrators charged Katz with developing a testing plan to help support Baltimore nursing homes. The plan wasn’t purely altruistic. Administrators worried that sick nursing home residents would soon flood the hospital’s emergency rooms. “Nobody wants an entire nursing home walking into your hospital at 2 a.m. with COVID,” Katz says.
What Katz found astounded her. At the first nursing homes tested, more than 38 percent of residents were positive for the virus, and the majority of them had not shown symptoms, a finding with dangerous implications across the country, Katz says.
The Johns Hopkins plan was a small-scale success. But the widespread testing that could have blunted the force of the pandemic did not happen early enough in most nursing homes.
Researchers like Katz are often reluctant to draw strong conclusions from their work, preferring to let the science and the data speak for themselves. But on the federal testing initiative at nursing homes, she has harsh words. “The entire testing process in this country has been a complete debacle,” Katz says.
Health care bureaucracy
- Agencies, owners, governments all pointed to others to take charge
- Lack of inspections, unrestricted government cash meant no accountability
As the coronavirus tore through nursing homes around the country, so many families were asking, “Who’s in charge of the situation?” The frequent answer: “Not us.”
Elaine Ryan, AARP’s vice president of government affairs for state advocacy, says the lack of accountability during the crisis stems primarily from federal and state governments and the nursing home industry passing the buck back and forth as the virus raged through nursing homes.
“It was really difficult to figure out who was accountable for what,” Ryan says. “It was a time of national disaster, and the federal government transferred the obligation to help to the states, and the states transferred the obligation to nursing home facilities.”
Ernie Tosh, a lawyer in Texas who specializes in elder abuse, blames a lack of federal and state preparation before the virus arrived. When the virus surfaced in China in late 2019, CMS and the states failed to prepare for a mass outbreak in America’s nursing homes, he says. “Instead of making sure facilities had adequate equipment and disaster plans, they did nothing,” Tosh says.
In the early days of the outbreak, nursing homes were caught flat-footed, without N95 masks and other needed equipment. A federal policy of prioritizing critical care hospitals left states to procure their supplies. That set off bidding wars and often left nursing homes empty-
handed. When the federal government did take action to help nursing homes, it often did so with glaring incompetence. In spring, for example, the Federal Emergency Management Agency (FEMA) began sending badly needed masks, gowns and other personal protective equipment to more than 15,000 nursing homes. But many of the shipments, which were touted by Vice President Mike Pence as vital federal support for nursing homes, contained unusable gear, including expired or faulty surgical masks and gowns without armholes. None of the shipments included what nursing homes needed most — the N95 masks that protect workers from inhaling the virus and spreading it to residents.
Ryan calls it the “Keystone Kops of a public health response.”
In March, CMS made what many consider another huge mistake by suspending routine state inspection of nursing homes and restricting long-term care ombudsmen, who are charged with advocating for residents, from making visits. The rules were meant to prevent outsiders from bringing the virus in. But as a result, nursing homes operated without scrutiny.
After the ruling, Melanie McNeil, the Georgia state long-term care ombudsman, had staff barred from visiting facilities. She worries about what she will find when ombudsmen can return. “We really don’t have a good picture of what’s happening,” McNeil says.
Critics also say the overwhelming federal response to the crisis at nursing homes has been to throw money at the problem, without ensuring that taxpayer dollars go toward protecting residents. By September, nursing homes had received over $21 billion in federal relief funds, according to CMS.
But only $2.5 billion was specifically allotted to infection control; the rest came with almost no strings. “It’s in my hall of shame that the federal government gave the nursing homes those dollars with no accountability,” Ryan says.
The Nursing Home industry
- Many facilities were understaffed and underfunded prior to the pandemic
- For-profit structure appears to have reduced care quality at many homes
Even the most ardent critics of the nursing home industry agree that it was dealt a nearly impossible hand, and in many cases, was left to take the brunt of public anger over the large number of deaths at nursing facilities.
But that doesn’t absolve the industry from the poor decision-making that made a bad situation much worse, those experts say.
In response to AARP calls for comment, American Health Care Association (AHCA) spokeswoman Cristina Crawford says the failure of public health services at all levels to prioritize nursing homes for both testing and personal protective equipment left the industry unequipped to stop the spread of the virus.
“It was difficult to get anyone to listen for months, leaving devastating consequences for our residents and staff,” Crawford says.
The nursing home industry has been aggressive in shifting the blame and in trying to avoid the financial consequences of the deaths in its facilities. This summer, Mark Parkinson, AHCA’s president, announced a $15 million media campaign to boost public opinion of nursing homes, which was badly bruised by the pandemic. The association is also pushing for state and federal immunity from legal liability during the outbreak, which has been granted in more than 20 states.
But data is beginning to show linkages between nursing home quality and coronavirus cases. For example, researchers at both the University of California, San Francisco, and the University of Rochester Medical Center found that facilities that had received lower quality ratings from regulators before the pandemic were more likely to suffer outbreaks.
Seventy percent of nursing homes are for-profit operations, a factor that’s been linked to the spread of COVID-19. An August report commissioned by Connecticut found that for-profit homes in the state had about 60 percent more COVID-19 cases and deaths per licensed bed than nonprofit facilities.
Risks may be even worse at for-profits run by private-equity firms, which acquire nursing homes, cut costs and then sell at a profit. A study by Americans for Financial Reform Education Fund found those nursing homes in New Jersey had a disproportionate share of COVID-19 deaths.
Staffing levels also appear to be a key factor in the virus’ spread. In August, a study in JAMA found that across eight states, facilities with higher levels of nursing staff had fewer COVID cases than those with fewer staff.
And in July, a report published by the National Bureau of Economic Research raised alarms about the common practice of care staff working in multiple facilities. Nursing homes with higher rates of shared staffing, the researchers found, had higher rates of infection. Limiting care staff to a single nursing home, they concluded, could reduce COVID-19 infections in facilities by 44 percent.
That’s no surprise to Lori Porter, cofounder of the National Association of Health Care Assistants, which represents many nursing home care workers. With an average wage of around $13 an hour, care workers often work at multiple nursing homes to make ends meet, Porter says. Many staffers don’t receive health insurance or paid sick leave, leading some to work even when they were experiencing coronavirus-type symptoms. “What did you think was going to happen?” Porter says.
There is much responsibility to go around. But Richard Mollot, the executive director of the Long Term Care Community Coalition, says he is appalled by the industry’s “take-no-prisoners” approach to deflect blame.
“After months of devastation for residents and their families, I have yet to hear a single apology, a single provider say ‘We have learned, and next time we’ll do better,’ ”
Mollot says. “The failure to fully acknowledge the losses and the toll on residents and families is, in my opinion, unforgivable.”