A wave of pandemic deaths has triggered a reevaluation of long-term elder care, as nursing homes weigh options for preventing viral spread and families look to bring relatives back home
The Arbeeny family members trace their New York City roots back to the mid-1800s, when their Syrian forebears escaped Ottoman killings and immigrated to America.
They eventually planted roots on a block in Brooklyn, where they have been for five generations, and opened a brick oven bakery on Atlantic Avenue making pita. When the family hosts a block party, about 300 relatives come from the surrounding area.
Until last year Norman Arbeeny, then 88, was a fixture on the block, according to his son Daniel Arbeeny. Norman would hang out on his stoop, talking to everyone, and he was spry enough that he made deliveries for his son’s HVAC company.
Then, around Christmas 2019, he started having a series of health setbacks. He went to a hospital and later, when he needed a bedsore procedure, a nursing home. His nursing home stay came at the peak of the coronavirus pandemic in New York City—but the nursing home, like many others, wasn’t equipped to handle patients in a pandemic. Crazy with worry and barred from visiting, the family did what they could to get Norman out of the nursing home when the bedsore treatment was finished. They arranged 24-hour care at home and hoped he hadn’t contracted the virus.
But once home, Norman became congested and lethargic, and his doctor ordered a COVID-19 test. Hours before the positive results came back, Norman died at home in the middle of the night.
The Arbeenys lost four family members in a week to the virus—including an uncle in Brooklyn and a cousin in a nursing home on Staten Island.
“It’s hard to describe,” Daniel said of his family’s losses. Still, he’s thankful that he and the relatives who cared for his COVID-positive dad didn’t contract the virus. “Through it all, the Lord was really keeping us.”
The coronavirus has killed more than 183,000 people in U.S. long-term care facilities, according to an estimate from the Kaiser Family Foundation—about one-third of all U.S. COVID-19 deaths. In Canada, 80 percent of COVID-19 deaths were nursing home residents. In response, nursing homes are moving to alter designs and improve staffing in their institutions to reduce the transmission of airborne diseases, and families are changing how they arrange care for elderly relatives. Many families are taking difficult measures to arrange at-home care for relatives if they can, hoping to reduce not just disease risk but the isolation many nursing home residents have felt over the past year.
Still, some families and nursing home personnel see indifference from Americans about caring for the elderly and planning for circumstances that require institutionalization.
“Where the rubber meets the road is when you’re busy, and they’re old and they’re dying,” said Daniel Arbeeny. “If anything has to change, we need to value life. And we don’t.”
THE NURSING HOME INDUSTRY is aware that Americans want reassurance about the safety of their institutionalized loved ones in future pandemics. Some ideas, like redesigning nursing home buildings to reduce the circulation of airborne diseases, were already in progress before the pandemic.
“Every provider wants to prove that they are doing what they need to do to prevent something like this from happening again,” said Stuart Barber, an architect who designs nursing homes with the Charleston, S.C., firm McMillan Pazdan Smith. But changing or building new facilities is expensive, and “margins were tight to begin with,” he said.
Over the course of 2020, the U.S. nursing home occupancy rate has dropped by about 10 percent—a decline experts attribute to deaths, a drop in new admissions, and families removing loved ones from facilities. Fewer nursing home residents means less revenue for nursing home companies that want to make facility improvements. Nursing homes also lost staffers burned out from pandemic stress or able to make more money elsewhere. Those workers might be costly to replace. The industry also expects stricter government regulations as a result of the pandemic.
Retrofits of existing buildings, which are often 60 or 70 years old, are of “higher cost and much less benefit,” Barber said. But building a new facility is also difficult, because a nursing home would have to buy another piece of land, build, move residents, and then decide what to do with the old facility. He’s seen such a plan work well if the old facility is on lucrative land next to a hospital, but otherwise it puts institutions in a tough financial situation.
Barber is waiting for more research on the particular transmission patterns of the virus that causes COVID-19 to see how the pandemic might alter his work. For example, in some situations, putting infected residents in an isolation unit was good, and in others it made the outbreak worse. The way a facility handled isolation units mattered.
“This is certainly not a new thing to most facilities. They have flu outbreaks every year,” said Barber. “It has to do with the amount, right? It’s typically isolating the single case or two cases if they are able to. Once it gets past that, everything breaks down.”
Some in the industry are pushing expensive HVAC retrofits that Barber isn’t sure are as cost effective as other measures. He has pushed clients to wait for more research on transmission and HVAC, because those additional filtration systems can always be added later.
Even before the pandemic, nursing homes were trying to create facilities that feel less institutional and more residential. That means more private rooms, which have an added benefit of infection control, and fewer large congregant areas.
But for quality of life, residents need not only infection control but communal spaces, Barber argues. He recently talked to a nursing home provider who told him, “The worst part of the last year for those residents was a complete lack of meaningful interaction with anybody.”
Barber advocates for the “household model,” redesigning institutions into pods serving 20 to 30 residents instead of 100. Facilities would have fewer hallways and more front doors, and communal spaces within the pods. Nursing staff would be concentrated in the 20-person pods rather than serving an entire facility, so dedicated staff for a “household” would feel more like family members, said Barber. He thinks that also might help with staff retention.
Post-pandemic, he suggests more “nooks and crannies” for people to have visitors instead of a large dining hall and making visiting areas with separate entrances so visitors don’t have to walk through residential areas.
FROM DR. BRIAN KRIER’S PERSPECTIVE, the best preventative for pandemics hitting nursing homes is good staffing. Krier, a family doctor serving nursing home patients in Monroe, La., saw the coronavirus sweep through local nursing homes “like a forest fire.”
The government rates nursing home quality based on health inspections, staffing (that is, staff hours per resident), and various other quality measures. “The nursing homes that had the highest ratings were only protected by the coronavirus based on their staffing rating,” Krier said. “You’d think more people coming in, more chance of the virus, but it’s the care.”
The coronavirus overwhelmed nursing home staff where he was in northern Louisiana, both with the actual toll of the virus and the amount of additional paperwork staff had to do. Facilities struggled to retain employees, who were “emotionally burned out,” he said, and the government was in many cases paying more for unemployment benefits than they made at their jobs.
“My biggest beef about how everything worked: There was not a source you could call saying, ‘Hey, we need some nurses’—whether it’s the National Guard or state nursing. We were making calls trying to get people,” he said.
As we talked, Krier was walking into a meeting about improved training for nursing home staff. He thinks more training gives employees confidence and improves retention. And nursing homes are trying to bring in more nurse practitioners and physician assistants for regular visits during the week. But the homes need physicians.
Krier estimates he and two other doctors see 90 percent of the nursing home patients in his area. A longstanding problem is that most doctors don’t want to do patient visits at nursing homes: One reason is that it’s inefficient for a doctor to travel to many different patients at different nursing homes in an area. But that lack of physician care is a bigger problem as nursing homes are getting more seriously ill people from hospitals, Krier said.
He’s wary of using telehealth to solve that problem. For the geriatric population, he believes doctors need to see their patients as they get up to walk to the bathroom, or hear their lungs. “In telehealth they’re all neatly placed in a wheelchair,” he said. He continued seeing his patients in person throughout the pandemic: “Praise the Lord, I never got sick.”
BECAUSE OF THE PANDEMIC, Dr. Krier has seen families go to greater lengths and expense to move family members out of long-term nursing home care. He has about 200 nursing home patients, and in a normal year he sees perhaps one family take the extensive measures necessary to move a relative from a nursing home to in-home care. This year, six families did so.
It’s difficult, and sometimes impossible, for families to find the necessary living space, care, and money for a relative needing around-the-clock help with eating, bathing, incontinence, and medical needs. But more are willing to try.
Edward Brehme, 88, was in a Georgia assisted living facility for rehab during the pandemic because of a fall. One or two members of his family at a time were allowed brief, masked visits, and since Brehme was mostly isolated, his great-grandchildren wrote him notes.
He healed up and was able to return to his Florida home, but he now requires constant care, which his family is attempting to provide. Pandemic or no, Brehme wants to stay at his home, with familiar surroundings and his dog. Brehme’s daughter Lori Knuteson has temporarily moved from Georgia to care for her dad at his home while the rest of the family searches for a long-term solution.
The planning is daunting: “We don’t know if it’s financially and logistically feasible,” said Scott Knuteson, Brehme’s grandson. Brehme is a Navy veteran, but even with special benefits for his service in the Vietnam War, his family is facing a “maze” of paperwork to arrange in-home care, his grandson said. They wish there was a professional advocate or central clearinghouse to help them figure out benefits or programs that might help. One sister has committed herself to researching and handling paperwork.
Brehme married Lori Knuteson’s mom in 1962, when she was a widow with eight children. Later, he was a caregiver for her for years as her health declined with ALS. His children feel it is their turn to honor him and do whatever they can to provide him with care at home, but it might prove impossible. For now, the siblings will rotate providing care.
End-of-life care isn’t something Americans “often think about or want to talk about,” Scott Knuteson noted. “It requires a lot of time and planning … to care for your loved one in their own home.”
Funding for in-home care
New York City recently announced $58 million in new funding for the elderly to have more in-home care and neighborhood services, with the goal of being an “aging-in-place city.” This trend is happening in big cities and in rural counties—like Nelson County, N.D., which recently obtained state funding to provide more in-home care, including bathing, to seniors. President Joe Biden’s proposed infrastructure bill also provides billions of dollars in new funding for in-home care. In-home options are not always possible given a person’s medical condition, home setup, or support from family. But when possible, it’s usually what patients prefer and is less expensive than nursing homes. —E.B.
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