Nursing homes were not on our minds much before the COVID-19 pandemic. Then their residents began dying by the thousands.
While there are no definitive figures, nursing home residents and staff appear to account for about one-third of the roughly 90,000 COVID-19 related deaths in the U.S., according to The New York Times. Those figures may be low because some states do not report such figures and the CDC is just beginning to collect them.
The stunning death toll has brought scrutiny to an industry that many believe is due for an overhaul. Questions about the way it's paid for, staffing levels, adequate training for staff, effective regulations and oversight all are raging as states battle to control the ravages of the pandemic.
"There's lots of hubbub" around nursing homes, says Dr. Louise Aronson, a geriatrician, professor of Medicine at UC San Francisco, and author of Pulitzer Prize finalist Elderhood. And it's important, she says, that the public keep that focus.
"The way we've created nursing homes," she says, "they're so separate from real life that it's altogether too easy for people to go back to their lives and just kind of forget about it and not make a difference."
There have long been ideas among people who study nursing homes — or work in them — for ways to make them safer and more humane. Before the pandemic, these ideas weren't of much interest to anyone outside the field. But those proposed innovations are now attracting a wider audience.
What first drew that wider audience was the shocking speed with which the coronavirus tore through nursing homes. But slowly, they're learning that nursing homes struggled with infection control long before the coronavirus came around.
Even after the pandemic began, nursing home inspectors found that one-third of nurses and nursing assistants did not wash their hands properly and a quarter were using personal protective equipment (PPE) incorrectly.
But nursing homes haven't had to worry about inspectors citing them for those failings, says Charlene Harrington, a professor of Nursing and Sociology at the University of California San Francisco.
"The fines are so small that they don't really have an impact on the nursing home," she says. "It's just the cost of doing business."
The pandemic exposed the weaknesses of the nursing home system. Facilities were short of PPE. Tales abounded of nursing home staff wearing rain ponchos and goggles from hardware stores because they couldn't get proper gowns and face shields.
Yet, the federal government only began providing supplies this month, and it's not much: FEMA says it will send two shipments, each containing a one week supply of PPE, to every nursing home in the country by July 4.
Nursing homes also have not been a priority for testing, which is a key step to catching infections before they can spread. In a recent phone call with state governors, Vice President Mike Pence encouraged them to see that all nursing home residents and staff were tested for the coronavirus, but the Trump administration is not mandating this. Yet, despite nursing homes overwhelming number of cases and deaths, obtaining tests has remained a struggle.
"Do I feel that sometimes maybe nursing homes get the short shrift of things?" asks Daniel Ruth, president and CEO of the San Francisco Campus for Jewish Living, which includes a skilled nursing facility. "The answer is 'yes.' Our acute hospital partners have a much louder voice for advocacy."
But now that nursing homes have the public's attention, the industry is pushing for more support.
The American Health Care Association and the affiliated National Center for Assisted Living have asked Congress and the Trump administration for $10 billion. They say the money will be used for additional staff, hazard pay, and to make up for the losses they've taken due to their inability to admit new patients during the COVID-19 crisis.
"The truth is that nursing homes have not failed America. The public health system has failed nursing homes," said Mark Parkinson, president and chief executive officer of the American Health Care Association and National Center for Assisted Living, in a column by the Morning Consult. "Long-term care facilities are doing everything possible to stop the spread of this virus. But we need help."
The two trade organizations commissioned a survey showing overwhelming numbers of voters think that nursing homes deserve more financial support from the federal government.
More financial support could come with a price. Congressional Democrats have introduced legislation that would create new requirements for nursing homes in staffing, infection control, and quality of life for residents.
Long-time nursing home analysts offer some other innovative ideas.
Smaller is better
"I've been teaching nursing homes and studying this area for 20 plus years," says David Grabowski, professor of Health Care Policy at Harvard School. "I'm still waiting for the individual that wants to go to a nursing home; that person probably isn't out there."
Grabowski says that's in part because the facilities value the needs of the institution over the needs of the individuals who make their homes there.
"I would really think about smaller home environments where we value the caregivers and we value the residents," Grabowski says. He imagines houses with just eight to 12 residents living together. "I think in general, we've had way too much focus in terms of regulation on quality of care and not enough on the quality of life in these homes."
Limiting occupancy can also help control the spread of infection, says Daniel Ruth, CEO and president of the San Francisco Campus for Jewish Living.
"I absolutely believe that all rooms should be single rooms," Ruth says, as are almost all rooms at the Jewish Home, as the nursing facility on the campus is known. Currently, many nursing homes house residents two or three or even four to a room, all sharing one bathroom, making it easier for infections to spread.
Change the inspection system
One way to improve residents' quality of life, Grabowski says, would be revamping the inspection system.
"Unfortunately, we've been much more about identifying problems than we have been about working with facilities to help solve those problems," he says.
Right now, inspection is handled by one state bureaucracy and quality improvement by another. He'd like to see them combined.
"Imagine I'm a surveyor right now, going into a nursing home to look at their infection control. If I see a problem with the way the staff is using the personal protective equipment," Grabowski says, "I can write that down on a sheet of paper and take that back and say there were problems. [Or] I could help them immediately start to fix that."
AHCA President Mark Parkinson agrees that "the survey system is broken."
In a conference call last month with reporters, Parkinson said that it "focuses on too many things," making it hard to prioritize. He calls the system "punitive" and "combative." Parkinson says he hopes to sit down with stakeholders when the pandemic is over "and figure out a better way."
Professor Charlene Harrington of the University of California, San Francisco, says a "better way" would be to refocus the inspection system on the fundamental problem of nursing homes, which she says is inadequate staffing.
Nursing assistants, she says, are "running from one resident to the other without hand washing," which she says is one of the main reasons that nursing homes are so often cited for poor infection control.
So many of the citations that nursing homes receive — from poor infection control, to patients with bed sores, to nutrition problems — can all be traced back to insufficient staff, says Harrington, but it's something they're almost never cited for directly.
Harrington blames nursing home owners for the low staff levels.
"Over 70% of nursing homes are for-profit," she says, contending they reduce staff to lower their costs. "That's the primary way that for-profit companies can save money."
But Grabowski thinks the major reason that nursing homes don't have enough staff is Medicaid. It pays the bills for most nursing home residents, but it doesn't pay much. Nursing homes can barely break even on a Medicaid resident.
"There's under-investment in care generally and in staff in particular," Grabowski says. "And why can't we pay more for these services and value the people that provide care for all of us in these settings? You know, we're getting what we pay for right now. And it's unfortunately not a very good outcome."
There might be better outcomes if most nursing homes weren't designed to make money, says Daniel Ruth of the Jewish Home.
"If I was the king of the world, there would be a much greater proportion of nursing homes run by not-for-profits." Ruth says the Jewish Home's nonprofit status made it easier for him to do something that other facilities have struggled with during the pandemic.
Under a directive from the state of California for all nursing facilities, the Jewish Home began accepting COVID-positive patients discharged from hospitals. That was in early April. Since then, none of its prior residents have been infected, nor have any of its staff taking care of the new COVID-positive patients.
Ruth says that he was not only able to devote a separate wing of the facility to care for the COVID-positive patients and give them a dedicated staff, he was also able to take rooms that might ordinarily be filled with residents and convert them to spaces for the staff to relax, shower, and do laundry, which also protect them from infection.
"We took beds out of service, we took dollars away from the income statement," Ruth says. "We obviously knew what the economic impact of doing that would be, but we felt [it was] part of our mission and values." Ruth says he doesn't believe that a for-profit nursing home would have made the same choice.
Professor Charlene Harrington of UCSF agrees.
"The financial interests of for-profit nursing homes are too often in conflict with their mission to care for older adults," Harrington says. And the only way to fundamentally change that is to change the ownership structure, she says, regulating them like a utility.
"You would have very tough financial requirements, you would have stricter requirements of who could become an owner. Only owners with good track records would be allowed," Harrington says. "And you would have very strict standards around their staffing and the way they pay their staff and treat their staff."
People never picture themselves in a nursing home, Harrington says. But they should. And they should think about what they would like for themselves.
"Until we start doing that," she says, "we're going to allow them to continue to operate on a sub-par level."
A nursing home is "basically considered ... a place you send people when you don't really know what else to do with them," Louise Aronson says.
As a society, we would never put up with the state of nursing homes today if it weren't for our general disregard of older people, Aronson says. "We imagine older people to be of very little value. So it's kind of like time served as a human being. All those years you spent working and raising your family, they eventually become worth nothing."
To show respect for older adults, Aronson would like to see nursing homes be more like actual homes, stylish and stimulating, rather than soulless, institutional corridors of plastic and stainless steel.
"So your room would look like a place somebody actually wants to live, not like a cell or a hospital room," she says. "You would have access to outdoor activities. There would be, you know, plants and animals and lots of visitors and music and activities that were easy to get to."
Nursing homes could even be incubators for design that would help everyone, says Aronson. She envisions the creation of "really great looking showers that somebody can roll [a wheel chair] into." Or cool looking walkers or beds that move up and down. "Because the stuff that will work in these modern nursing homes will work in all our [own] homes, too."
And that would make our homes age-friendly, Aronson says. We might be able to put off moving to a nursing home for a long time. And we might be a lot happier if some day the nursing home is also our home.