Experts offer roadmap for reporters tackling America's nursing home crisis during COVID-19

The coronavirus pandemic has exposed the chasms, the fissures, the cracks in many American institutions. Nowhere, though, are they more apparent than in the nation’s arrangements for long-term care — specifically, in its nursing homes, where some 1.4 million people, mostly women, live out the rest of their days.

The virus has exposed what advocates for better treatment and families of loved ones in nursing facilities have known for years. Care is often substandard, infection control sometimes non-existent, living space overly crowded, staff members too few to keep residents safe, and a regulatory system that looks good on paper but too often looks the other way when politics and lobbying trump good enforcement and resident safety.

In May, the Government Accountability Office released a damning report showing that only 18% of the country’s nursing homes had no deficiencies for infection control and prevention in one or more of the years from 2013 through 2017, before the virus hit. That’s a grim indictment of how America cares for its most vulnerable elders. “It is a policy failure based on moral negligence,” said Larry Polivka, executive director of the Claude Pepper Center at Florida State University. “We need to understand more clearly this moral failure that is responsible for the crappy long-term care system we have built over the decades. It comes from not caring enough about older people when they need help.”

“What’s happening in nursing homes is shocking but not surprising. It was a catastrophe waiting to happen.” — Howard Gleckman, Urban Institute

Over the past few weeks, I watched momentum build for police reform and swift action taken in New York state by Gov. Andrew Cuomo, who told his TV audiences it was the time to “seize the moment” and enact significant police reforms by taking advantage of a political opportunity that doesn’t come very often. At the same time America’s nursing home tragedy was unfolding. Could the time be right for seizing the moment and enacting nursing home policies that would result in better, more humane care and fewer deaths next time a deadly pathogen strikes?

“What’s happening in nursing homes is shocking but not surprising. It was a catastrophe waiting to happen,” said Howard Gleckman, a senior fellow at the Urban Institute. But will the media continue digging after these early waves of deaths to show why better care is so crucial? Or will the coverage disappear when the shocking headlines subside?

I have been struck by the number of news outlets that have covered America’s nursing home horror show since the beginning of April. That may be the most attention given by the media to poor quality care ever, but certainly in the last few decades. Journalists have done their jobs well during COVID-19, despite obstacles and turmoil in their own newsrooms, bucking a long-running bias from editors against publishing too many stories about old people. One reporter told me when she was covering nursing homes before the pandemic that it was akin to pushing a giant boulder uphill. “As you know,” she said, “It’s hard to get news organizations to commit a sustained focus on nursing homes most of the time.”

Despite furloughs, Detroit Free Press reporters have managed exemplary reporting about the state’s lack of transparency and discrepancies between state and federal data. Reporters at the Palm Beach Post and Miami Herald chronicled the failures of the administration of Gov. Ron DeSantis to protect nursing home patients, even as the state refused to release the crucial numbers for weeks. The Florida news media threatened legal action before DeSantis relented. In Arizona, the Arizona Republic (also hit with furloughs) had to file a lawsuit to force information about cases from the state health department. The paper lost, but the governor has instructed nursing homes to release the numbers of infections and deaths to residents their families and anyone who has applied to live in that facility. Not exactly the best solution, but a start nevertheless.

In Boston, the Globe and other news outlets filed public records requests to get information about nursing home deaths that the state had been withholding from families and residents for months. Yet the nursing home team still managed to produce stories like this one. The nursing home team has been dismantled and one of the reporters transferred to the higher education beat.

Where should reporters go from here? To help answer that question, I rang up 11 of the country’s top experts in long-term care to assess why we’ve had such bad outcomes among nursing home residents and what we as a country can do.

Other outstanding reporting points to the need for changes in the way the way nursing homes are staffed and residents cared for. Reuters published a fine, thorough investigative report by Chris Kirkham and Benjamin Lesser that focused on serious staffing problems at a Life Care home in Massachusetts as well as the Hammonton Center for Rehabilitation and Healthcare in New Jersey. Lisa Desjardins of The PBS News Hour also examined poor staffing in a comprehensive piece. Dylan Scott at Vox gave a good overview of why nursing homes have been so vulnerable during the pandemic. One of his conclusions: The U.S. spends a lot less on long-term care than other nations, a key failure of U.S. policy that Vox and others need to explore further. The Louisville Courier Journal reported on the results of the state’s inspection reports conducted this spring, pointing out implausible results for readers to ponder. The inspections examined 154 facilities out of 285 in the state, including some with highest numbers of cases. The state inspectors, however, cited just two facilities for infection-related deficiencies. Both cases involved problems with employees not wearing facemasks.

All this good reporting raises the question: Where should reporters go from here?

To help answer that question, I rang up 11 of the country’s top experts in long-term care to assess why we’ve had such bad outcomes among nursing home residents and what we as a country can do, especially over the next 10 years when the first of baby boom generation reaches age 85 and are likely to need institutional or in-home care. Their suggestions offer a kind of road map for coverage as the nursing home saga continues.

Staffing is paramount, said all the experts I talked to. Too few staff figured into most of the tragedies this spring. The problem is hardly new. The Nursing Home Reform Act of 1987 required nursing homes to have “sufficient staff” to meet the needs of residents, and one RN director of nursing on duty eight hours a day, seven days a week, and a licensed nurse on evening and night shifts. But this standard has been criticized as inadequate. This minimum has not changed and advocates believe it is too low. “In over 30 years we haven’t been able to get a meaningful standard passed,” said Charlene Harrington, professor emeritus at UCSF’s School of Nursing. “One nursing home can make as much as $1million a year by understaffing.” It’s hardly surprising that when nursing home staff at homes across the country came down with COVID-19 and had to quarantine, residents were neglected. It’s also no secret that staff in many facilities is underpaid. All the experts I talked to suggested higher salaries were a key to better care.

Ownership, especially by for-profit chains, needs some careful scrutiny. Reporters would do well to investigate the ownership of facilities in their communities. Ownership is typically complex, involving complicated financial arrangements between nursing homes and service providers. “We don’t have good financial regulation,” Harrington says. “We know from research that the worst nursing homes have more Medicaid patients, poor quality and less staff, and are for-profit.”

Federal payment sources need a reexamination. The U.S. spends about 1% of GDP on long-term care while other developed countries spend between 2% and 4% percent. “One way or another we have to put more money in the system,” said Gleckman from the Urban Institute. A better-funded system would allow us to get rid of double rooms and four to a room, and allow for better common spaces and modernized facilities. Much of the money is still going to traditional nursing homes, even though older people and their families typically prefer home and other community-based elder living arrangements. Those are generally funded through Medicaid waivers, and there are long waits in many states for these services.

Waiver programs may be under even greater stress right now because of looming shortfalls in state budgets. Is there a better way to fund such programs that most families prefer?

Lax regulation by the Centers for Medicare and Medicaid Services (CMS) has been a major story only recently, but it has been a problem for years. Recent coverage, like the reporting done by the Detroit Free Press showing discrepancies between and state and federal stats on nursing home deaths, and the infection data examined by Louisville Courier Journal, point to regulatory stories waiting to be written.

Experts raised one overarching question. Why does the federal payment system treat people needing nursing home care differently from patients needing gallbladder surgery? Why, in other words, do families have to impoverish themselves before Medicaid pays for their care, while Medicare pays for gallbladder surgery and most other care needed by those same people without requiring them to “spenddown” and use up most of their assets first? Why isn’t nursing home care financed as social insurance like hospital care is financed under Medicare?

“There’s still general acceptance that it’s the family’s responsibility to take care of their family members,” said Judy Feder, former dean of the Georgetown’s Public Policy Institute. “We’re still relying on family care and underpaid workers to give the care, and that’s why this is such a wasteland of inattention.”

Journalists who’ve covered the pandemic’s nursing home story so well might just begin to change that narrative. The horrors are so immense; the numbers of deaths are so high. The future care for all Americans is at stake.

Veteran health care journalist Trudy Lieberman is a contributing editor at the Center for Health Journalism Digital and a regular contributor to the Remaking Health Care column.