Part of the Series
Despair and Disparity: The Uneven Burdens of COVID-19
The Struggle for Caregiving Equity
Lorry Sullivan was a regular visitor at the Our Lady of Consolation Nursing and Rehabilitative Care Center in West Islip, Long Island, New York, where her 89-year-old mother had been placed to recover from a fall earlier this year. But in March, the facility suddenly barred all visitors. And around the last week of that month, Sullivan said, phone calls went unanswered for several days. When she finally did get through to her mother at the end of March — when the coronavirus outbreak was ravaging New York City and seeping into neighboring Long Island — Sullivan recalled: “She sounded terrible.”
Soon afterward, she said, a doctor called to tell her that her mother had been found “unresponsive” after falling out of her bed. She also learned that her mother had a suspected urinary tract infection, and that COVID-19 was starting to spread through the facility. Though visits had been halted, Sullivan managed to arrange a visit on April 7. By then, she barely recognized her mother. Her face was heavily bruised and sunken; she had lost weight, so “there was nothing left of her,” and she had been running a fever for days. That week, her mother tested positive for COVID-19, and Sullivan scrambled to arrange to have her mother discharged early. Within days, however, her mother died of COVID-19 and pneumonia before Sullivan could bring her home.
Altogether, there were 39 confirmed COVID-19 deaths and one suspected death at the facility as of July 8 — one of the highest nursing home death tolls in the state.
Sullivan suspects that the nursing home deliberately kept her and other family members in the dark while the virus was ravaging their loved ones in late March.
She said she blames the medical director for the mistreatment of “these poor old people. You don’t put a limit on the amount of life that they have…. We don’t know how much longer my mother was going to live,” she said. “She didn’t go in there sick. She went in there with a leg injury, came out in a freaking body bag. Who are you to not let her family know what was going on?”
Our Lady of Consolation (which declined to comment on specific cases or residents, citing privacy laws) claims it always maintained communication with families as it coped with an unprecedented crisis, and stated that it “strongly den[ies] any improper treatment.” And many nursing homes across the state saw similarly devastating outbreaks — perhaps inevitable given that the residents, by definition, are older and more vulnerable.
“Obviously the horror could never be eliminated in this plague,” said Jack Kupferman, president of the Gray Panthers NYC, which advocates for seniors in New York. “However, the damage would have been more limited if, at an earlier stage, there were enough tests, if there were proper staffing, if there was proper infection control, and if there had been proper regulation from the federal and state [level].”
Instead, long-term care facilities have been steadily deregulated under the Trump administration. When COVID-19 hit the industry, many facilities were chronically understaffed and faced deep shortages of protective equipment. The death toll is a measure of the social infrastructure’s decades of neglect of the aging, according to Kupferman. “These are people who are invisible. They don’t speak up, and yet they’re the most vulnerable. So their voice is limited,” he said.
As of late June, the Centers for Medicare & Medicaid Services (CMS) reported that the number of COVID-19 infections among nursing-home residents had exceeded 126,402 nationwide, in addition to about 78,692 suspected cases and 35,517 deaths — though CMS admits its data is incomplete, as the data reporting only goes back to mid-May, and not all facilities have been consistently reporting data. An independent analysis by The Wall Street Journal estimated that by mid-June, the actual death toll for nursing-home staff and residents was about 50,000, or roughly 4 in 10 COVID-19 deaths in the U.S.
In New York, the COVID-19 crisis in nursing homes worsened after Gov. Andrew Cuomo issued a mandate on March 25 that effectively directed long-term care facilities to take in many COVID-19 patients from hospitals — an attempt to ease the pressure on hospitals that were becoming overburdened with COVID-19 cases. By the time Cuomo rescinded the mandate on May 10, the virus had killed 1 in 20 nursing home residents in the state.
Problems with infection control in nursing homes long predate the pandemic. A recent Government Accountability Office report found that about 4 in 10 nursing homes surveyed had deficiencies in infection prevention and control.
COVID-19 death patterns also highlight the racial disparity in long-term care. Researchers have found that the prevalence of residents of a racial or ethnic minority was more associated with fatality risk than the quality rating their facility received from CMS’s auditing system. According to R. Tamara Konetzka, a University of Chicago professor of health economics, nursing homes with higher proportions of people of color see higher death rates in large part because both residents and workers come from “neighborhoods where it’s also more likely that people will be essential workers, will need public transportation, will not be able to socially isolate because of their job,” resulting in higher exposure to the virus overall.
Although CMS and the Centers for Disease Control and Prevention have announced they would step up enforcement of infection control standards in nursing homes, historically, inspections and enforcement of nursing homes by federal authorities have been notoriously lax and failed to deter violations, according to Richard Mollot of the Long Term Care Community Coalition (LTCCC) in New York. When an understaffed facility can choose between paying “$100,000 a year to hire another [registered nurse] in your building, or you may face a $2,000 fine, and all you really care about is the money,” he said, “you wouldn’t hire the nurse, you would just run the risk that you might have a $2,000 fine.”
Embattled Workers
One major reason why infection control is so inadequate is simply that nursing homes lack the staff needed to deliver care safely and effectively. Though a nursing home’s medical director coordinates medical care, the bulk of the day-to-day care is handled by nurses, low-paid nursing assistants and other aides, who often tend to many more acutely ill residents than they can handle. One recent study found that about three-quarters of nursing homes frequently fell short of federal staffing guidelines.
Today, nursing home staff, particularly nursing assistants, typically earn dismal wages and suffer extremely high occupational injury rates. And they are among hundreds of frontline health care workers who have died.
By the second half of May, according to NPR, about a fifth of nursing homes nationwide reported that they were burning through their last week’s supply of protective equipment, such as masks, gowns or hand sanitizer.
The frontline staff in these facilities are among “the lowest-paid, the least-trained and the least-supported [health care personnel]…. We’re asking them to literally put their lives on the line for a position where they’re getting paid barely enough to feed their families,” said Diane Menio, executive director of Center for Advocacy for the Rights and Interests of the Elderly. “And they have to go home to their families, and they may be bringing the disease home.”
Felicia Glasgow, a licensed practical nurse at The Grand Pavilion for Rehabilitation and Nursing at Rockville Centre in Long Island, told me for Dissent that during the first several weeks of the outbreak, when the staff were overwhelmed with dozens of COVID-19 infections, they struggled to stretch their limited safety equipment — disinfecting masks so they could be reused on another shift, and using plastic bags as disposable gowns.
Some certified nursing assistants “actually took the plastic bags and made holes in [them], and put it over the [personal protective equipment (PPE)] to protect the PPE,” Glasgow recalled, “because sometimes you go from one patient to another patient, and they would rip that plastic bag off [so they wouldn’t] transfer the bacteria from one place to another. So we came up with all kinds of ideas … to protect our residents [from the virus]. So, it was a rough two weeks.”
The Grand Pavilion said in a statement that it had made “proactive” efforts to prevent infection, ensure staff had “the necessary equipment to provide the highest level of care while maintaining their personal safety,” segregate COVID-positive patients and facilitate “more than adequate levels of sufficient staffing.”
But Glasgow recalled that when the outbreak was at its peak, the workforce was way overstretched. Several staff members called out sick, leaving her to handle a 32-bed unit with just one nursing assistant. “The work is overwhelming,” she said, “but every day, you keep going back. And the lack of appreciation, sometimes, really gets to you. Because they don’t realize that every time I step in that building, I put myself at risk…. But my dedication to my profession made me go back every day.”
The Marketization of Nursing Home Care
Although high nursing home death rates have been observed in European countries as well, advocates for nursing home consumers see the monstrous death toll in U.S. facilities as a byproduct of a heavily marketized private health care system.
Unlike the hospital system, the nursing home industry is 70 percent for-profit, and the majority of facilities are chains. Private equity firms and real estate investment trusts — a form of ownership that allows properties to be traded separately from the operations of the facility itself — are also major nursing home investors.
The prevalence of for-profit corporations is linked to lower-quality care. One research study found that nursing homes owned by private equity firms tended to prioritize profits at the expense of quality of care. In New York, a 2019 study by the LTCCC found that while both nonprofit and for-profit facilities had the same number of fines for violations of federal minimum care standards, on average, the total fines were about 70 percent higher in for-profit than in nonprofit facilities.
“Nursing home real estate owners in many ways are today’s slum lords,” said Mike Wasserman, a medical director of a California nursing home and president of the California Association of Long Term Care Medicine.
And despite the pandemic, some nursing homes might see a boost in their business. Several states — including California, Massachusetts and Michigan — are incentivizing nursing homes to create special COVID-19 sections or become designated COVID-19-only facilities, in order to access relatively high Medicare reimbursement rates for coronavirus patients, according to Politico. Some Los Angeles nursing homes were offered about $850 per patient to serve as hubs for COVID-19 patients — more than quadruple the reimbursement rate for long-term dementia patients. Yet a number of the facilities seeking this designation so far have gotten poor quality ratings in past federal audits — prompting concerns from consumer advocates that vulnerable coronavirus patients will be concentrated in homes with substandard care.
The devastation experienced by many families of nursing home COVID-19 victims might soon be exacerbated by a quiet attempt by state and federal officials to shield long-term care facilities from legal liability over COVID-19-related death and illness. Currently, about 21 states have enacted laws or executive orders, including a massive liability shield tucked into a budget bill in New York, that make it harder to bring lawsuits against nursing homes. Claiming that legal immunity is necessary to help the long-term care industry survive the pandemic, the nursing home industry is also lobbying for a broad federal immunity rule that would cover all 15,600 nursing homes nationwide.
But advocates say the systemic lack of accountability in the nursing-care sector is precisely why the pandemic has killed so many residents. Eric Carlson, a directing attorney with the legal advocacy group Justice in Aging, argued that nursing homes do not need such broad immunity because courts would generally take the pandemic into account when weighing, for example, wrongful death lawsuits. By contrast, under blanket immunity, “providers wouldn’t be responsible, regardless of the facts — regardless of the short staffing, regardless of the poor management, and regardless of the poor care that might be provided,” Carlson says. “And this is not the time when we want to do anything to excuse poor care, because we need better care during this time, not worse care.”
The Future of Long-Term Care
To prevent another wave of coronavirus deaths in nursing homes, reform advocates have pushed for federal mandates to ensure facilities have access to adequate staff, training and equipment to deal with the outbreak, along with full transparency on infection and death rates. But there has also been a longstanding campaign to address the more systemic weaknesses in the nursing home workforce, with measures like safe staffing levels, which were recently proposed in a reform bill that would require at least 4.1 hours of direct nursing care per resident per day. (The average nursing care hours per nursing home resident totaled 3.8 hours a day in 2016.)
And the pandemic could compel people to rethink long-term care altogether; families may shift towards home-based care with a home health aide, instead of congregate settings like nursing homes.
“People have just sort of not thought about nursing homes too much,” said Jay Slotkin, president of the New York Medical Directors Association, which represents specialist doctors working in nursing homes. “They just [assumed] that … ‘everything’s okay, visit grandma when I want to.’ … Now they are going to look at it critically. And a lot of people are going to say, ‘I really don’t want grandma going to the nursing home.’”
The pandemic has, at least, made an often politically invisible demographic impossible to ignore.
“I think this causes us to take a long hard look at how nursing homes are structured and resourced … to look at what we want out of the senior housing industry,” Wasserman said. “Do we want to provide care for the most vulnerable members of our society, or do we want this to just be a business where real estate owners are making money, and we don’t really care about what happens to the people who live in [it]? And that’s something for society to decide.”
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