The stories about the Kirkland Life Care Center are harrowing ― and, in the worst-case scenarios, a preview of things to come.
As of late last week, 26 residents of the Seattle-area nursing home had died because of the coronavirus. Twenty-one current residents had tested positive for COVID-19, the disease caused by the virus that first showed up in China late last year, with test results for another dozen pending.
Dozens of staff were home, away from work, in many cases because they had tested positive. That created severe shortages. At one point last week, administrators said they had just three full-time workers to care for the facility, which has more than 100 beds.
As the cases and fatalities mounted, the nursing home started restricting access, even to family members, as an emergency precaution to stop the transmission of germs into and out of the facility. That forced family members to communicate with residents through windows, or not at all.
“I just feel ill that my mom could be dying alone,” a relative of one resident told The New York Times. “It’s pure panic and I can do nothing. I have no control.”
“I don’t want to alarm people, but I am really worried. I’ve never felt as unnerved as I do now.”
The federal government has dispatched teams of personnel to Kirkland, both to provide caregiving staff and to investigate why the infection spread as quickly as it did. Meanwhile, the Trump administration, working with the U.S. Centers for Disease Control and Prevention, has issued nationwide guidelines for nursing homes and other long-term care facilities.
These guidelines call for the kinds of practices Kirkland eventually adopted, including expert-recommended, if difficult, restrictions on visitors and a new emphasis on infection control. The American Health Care Association, the trade group that represents nursing homes, has issued its own, similar set of guidelines and said it supports the government efforts.
“The most important thing right now is getting the message to all providers, by any means, about what they can do to prepare and respond,” the AHCA told HuffPost in an official statement.
The hope is that these measures will prevent more outbreaks like the one at Kirkland ― or, at least, contain outbreaks if they happen.
But it will not be easy.
Infection control is a long-standing, well-documented problem in nursing homes and similar facilities. They are chronically understaffed, even though they generate significant profits for some private-equity firms. Government oversight has always been lax ― although, notably, the Trump administration has for the last few years been taking steps to weaken it even more.
Truly fixing these problems will take time, because they were literally decades in the making. Long-term care is yet another example of the U.S. failing some of its most vulnerable citizens, and the issue is only now starting to get the attention it deserves in American politics.
In the meantime, the well-being of the people in long-term care facilities, along with the people who care for them, depends heavily on efforts to mitigate the pandemic’s spread across the U.S. And nobody yet knows how well that effort will go.
“I don’t want to alarm people, but I am really worried,” Richard Mollot, executive director of the Long-Term Care Community Coalition, told HuffPost. “I’ve never felt as unnerved as I do now.”
High-Risk Patients In High-Risk Settings
Residents of long-term care facilities are elderly or have serious health problems, or both, which means they are the groups most at risk of severe complications from COVID-19. They usually have cognitive or physical limitations, as well, and in some cases those limitations are severe.
Many cannot feed or dress themselves, or suffer from incontinence and are unable to handle their own hygiene. They depend on caregivers — sometimes around-the-clock — and, especially if they suffer from dementia, they may resist or actively fight as those caregivers try to help them.
In recent years, the emphasis for long-term care has been to have the elderly and medically frail stay at home whenever possible. But people still end up in long-term care facilities, frequently because hiring enough qualified home aides would be too expensive, and in many cases they or family members must shop around for the cheapest options because those are all they can afford.
Long-term care comes in many varieties ― big and small, part of corporate chains or independently owned and operated. There’s assisted living, which is under state regulation and is mainly for people who need some help but can still do many daily tasks on their own. Then there are nursing homes, which are subject to federal oversight and are for people who need more attention because they have fewer capabilities.
At its best, the care in these facilities is loving, attentive and thorough. At its worst, it’s lackadaisical, impersonal and outright hazardous.
Nursing homes, in particular, have a reputation for poor care. In 1987, in response to stories of neglect and abuse, Congress passed the Nursing Home Reform Act, which established uniform quality standards, regular inspections and fines for noncompliance.
But 30 years later, problems remain widespread, especially when it comes to stopping the spread of communicable diseases like influenza, norovirus and, yes, coronavirus.
More than 60% of nursing homes had at least one citation for lapses in infection control since 2017, Kaiser Health News reporter Jordan Rau found after reviewing federal inspection records. Even among the top-rated facilities, the ones earning a coveted “five-star” rating, 40% had infection control lapses, Rau found.
Not every lapse is a serious one and only a tiny fraction of the citations, less than 1%, were the kind that would trigger financial sanctions because they caused patient harm. But estimates suggest that 380,000 people in long-term care facilities die from infections each year and, advocates say, there’s reason to think state inspectors simply under-estimate the severity of problems they find.
“Many more than 1% of infection control deficiencies reflect serious failures of care,” Toby Edelman, senior attorney at the Center for Medicare Advocacy, told HuffPost. “Problems in infection control cause, literally, millions of infections in nursing homes and other care settings each year, with hundreds of thousands hospitalized and many deaths. To call these problems ‘no harm’ is just not true.”
A Problem With Hand-Washing — And Staff Levels
Experts say the single biggest infection hazard in long-term care facilities is also the most obvious one and, in theory, simplest to fix: lack of adequate hand-washing. But there’s reason to think hand-washing might not be such an issue if these establishments had more people working at them, people with better training or both.
Citations for poor hand-washing are more common in facilities with fewer staff, researchers have found, and it’s not difficult to imagine why. The more that care workers are rushing to handle their high-needs patients, the less likely they are to wash their hands thoroughly or, in some cases, to wash them at all.
“The biggest problem in nursing homes is not enough staff, not enough people to get done what needs to be done,” Edelman said. “And there’s certainly not enough professional nurses. … They can be really decent, caring, doing the best they can, but with so much to do. It’s not their fault.”
Industry officials say they have enough workers to do their work adequately. “Facilities are staffed for what they need to do,” said David Gifford, chief medical officer for the American Health Care Association. But individual facilities frequently have trouble filling slots, he added, which has become a particular problem in this outbreak because so many workers are on self-quarantine.
The industry has long blamed these shortages on a combination of factors, including a strong economy, which they say makes working at their facilities less attractive, and low payments from government programs, especially Medicaid, which is the single biggest financier of nursing home care in the U.S.
If they had more revenue, industry officials say, they could pay higher wages, attracting more ― and more highly trained ― workers.
Patient advocates like Edelman and Mollot are skeptical of such arguments, pointing to the industry’s traditionally high profits and the number of private-equity companies that have been investing heavily in the field. And they have research to back them up.
A 2016 report from the Government Accountability Office found that, on the whole, independent and nonprofit facilities ran at lower margins but also had higher ratios of caregivers to patients. Other studies have linked private equity specifically to “lower-quality care, declines in patient health outcomes and weaker performance on inspections,” as a recent review by Eleanor Laise of MarketWatch noted.
If owners weren’t so determined to extract so much money for themselves and their investors, advocates say, they could hire more staffers, pay more salaries and offer better benefits ― including not just health insurance but paid sick leave.
“They’re always saying the same thing: There isn’t enough money and there’s too much regulation,” Edelman said. “But this is a profitable industry.”
Obama’s Regulations And Trump’s Rollback
As part of its COVID-19 response, Trump administration officials have issued more detailed guidelines on how nursing homes can avoid infections. They’ve also said they are going to make sure inspectors focus on infection control more specifically.
But this comes after a year of trying to roll back one of the few existing protections: an Obama-era regulation that required all nursing homes to put infection control experts on staff, at least in a part-time capacity.
The Trump administration has been trying to change that rule, so that the facilities could rely on outside consultants, with a vague requirement that consultants spend “sufficient time at the facility.”
That regulatory change is not yet final. But the Trump administration has already rolled back another Obama rule, one that prohibited nursing home contracts that required arbitration, rather than lawsuits, to settle disputes.
And while the Obama administration had ramped up fines for infractions, the Trump administration has dialed them back down, by changing regulations to favor one-time penalties rather than penalties that accumulate for each day a nursing home is in violation of a standard.
That change is the likely reason that average fines, which had reached $41,260 in the final year of the Obama administration, fell to $28,405 under Trump, according to another Kaiser Health News investigation by Rau.
Industry lobbyists had asked for this change, saying it created wasteful, ultimately counterproductive paperwork. The Trump administration agreed. “Rather than spending quality time with their patients, the providers are spending time complying with regulations that get in the way of caring for their patients and doesn’t increase the quality of care they provide,” one official said after the regulatory change.
But the new fines offer far less incentive to change conduct, especially for the larger organizations. “For a small nursing home, it could be real money, but for bigger ones, it’s more likely a rounding error,” Ashish Jha, a professor from Harvard’s T.H. Chan School of Public Health, told Kaiser Health News.
On Capitol Hill, Sen. Ron Wyden (D-Ore.) and Rep. Richard Neal (D-Mass.) have called for tighter standards and, more recently, for an investigation into whether lax regulation has left nursing home residents more vulnerable to the coronavirus.
“Kirkland should be a wake-up call for all of us,” Wyden, who has been among the most persistent advocates for seniors in Congress, told The Oregonian this week. “I have long been fearful about whether there are adequate protections for the elderly in a health care emergency or heaven forbid, a pandemic.”
A Long-Term Agenda For Long-Term Care
Those efforts have enthusiastic support from advocates like Edelman and Mollot. They would also like to see similar regulations apply to assisted living facilities, which are under state oversight.
And to make sure these long-term care providers are actually spending money on their residents, many senior groups have called for creating a “medical-loss ratio” for providers ― that is, a minimum standard for how much revenue must go to patients, rather than administration or profits ― and penalizing those who violate it.
A similar standard exists for insurance companies, thanks to the Affordable Care Act.
But guaranteeing access to high-quality long-term care, whatever its form, might ultimately require spending more money on it too, because the kind of care that lives up to higher standards inevitably costs more than most Americans pay on their own. Existing government programs, like Medicare and Medicaid, pay for these services only under certain circumstances and for certain groups of people.
The topic has come up in the presidential race, with the most ambitious proposal from the remaining candidates coming from Sen. Bernie Sanders (I-Vt.), who included a long-term care benefit as part of his “Medicare for All” proposal. Vice President Joe Biden has not offered anything promising similar reach, though he has proposed new tax breaks to offset some long-term care costs.
On Capitol Hill, a comprehensive long-term benefit is part of the Medicare for America legislation from Reps. Rosa DeLauro (D-Conn.) and Jan Schakowsky (D-Ill.).
Long-term care was supposed to be part of the Affordable Care Act, too, but its proposal, to create a voluntary insurance program, had no funding beyond the first few years and was canceled because of that. Lack of funding has always been an obstacle to paying for long-term care, because it’s labor intensive and that makes it expensive, especially if the idea is to hire more people and pay them better than they are paid today.
The debate over whether and how to finance long-term care will come eventually. For now, there are more than a million people in nursing homes and assisted living facilities. And they are vulnerable.
”I think the staffing problem is going to be extremely hard to address in the short term,” said Mollot. “That is one of the reasons why I am so deeply concerned.”
It is also why the safety of residents, and the safety of the people who care for them, depends so heavily on what happens outside the facilities ― specifically, on whether the rest of society can slow the pandemic’s spread.
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