COVID has been devastating nursing homes. Can it change how the US thinks of end-of-life care?

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Written by Amy Ta, produced by Bennett Purser, KCRW, Dec. 09, 2020

“What we have in the nursing home industry is decades of chronic understaffing for a variety of reasons. And during the pandemic, that’s just been exacerbated,” says R. Tamara Konetzka, a health economist at the University of Chicago who studies long-term care.Image by truthseeker08 from Pixabay

Nearly 300,000 people in the U.S. have died of COVID-19, and 40% of them were living and working in nursing homes. People in these facilities will be among the first to get vaccinated. 

Riverside resident Denise Bogan’s mother is 99 years old, has dementia, and lives in a nursing home in Duarte, California. “The best word to kind of sum all this up is it’s just heartbreaking,” Bogan tells KCRW. “It’s heartbreaking that she cannot be with her family. It’s heartbreaking for us that we can’t be there to love her up.”

Bogan says that the Duarte facility has experienced a wave of staff contracting coronavirus, but she hasn’t heard of any residents testing positive so far. 

“It seems that every three or four days, we get another email saying that one more or two more staff members have tested positive. … It’s extremely concerning because it’s extremely probable that any one of the residents could get COVID from any one of the employees. And there are a lot of employees there,” she says. 

Research shows that staff infections are the main way the virus gets into nursing homes. That’s according to R. Tamara Konetzka, a health economist at the University of Chicago who studies long-term care. 

She says staff not only handle residents’ daily needs, but they test residents for COVID, separate those who end up being positive, and improve communication with families. 

“What we have in the nursing home industry is decades of chronic understaffing for a variety of reasons. And during the pandemic, that’s just been exacerbated,” she says. “And so we do have staff go from facility to facility. We also have facilities that are severely understaffed. And we have facilities where staff might have to go back and forth between COVID positive and COVID negative residents, because they just don’t have enough staff to have sort of a separation in that sense.” 

Konetzka says the lack of funding is one factor behind this problem. “We grossly underfunded long-term care in this country. It’s mostly dependent on Medicaid, which in many states pays very low rates for nursing home care. And it’s also paid in a very fragmented way.” 

As Bogan sees what’s happening to her mom right now, she says she’s thought a lot about writing down — on paper — her own wishes for the end of life and quality of death. 

“What I realized with my mom in this situation is that not only are her final days being stolen away from from her, the quality of those final days or weeks or months (we don’t know how long she has) … is also being stolen from all of us, adult children and grandchildren and great grandchildren that adore her,” says Bogan. 

She continues, “So it definitely has inspired my husband and I to have many conversations about, you know, do we want to be in a nursing home? The pros and cons of that? And what does quality of death look like? What is it that would be a peaceful, calm, beautiful transition from this life to the next? And how do we put that into paper? … As a society, it’s something that we all need to put more time and thought into.” 

Riverside resident Denise Bogan with her mother, Gabrielle Lewis, who lives in a senior care home in Duerte, California. Photo courtesy of Denise Bogan. 

Konetzka says it’s ideal for people to be able to choose where their loved ones get their health care needs, including at home. She adds that there have been dramatic shifts in Medicaid funding from institutional care to home and community-based care over the past few decades, and this varies by state.

However, she acknowledges that home-based care is not a panacea. She says research has found that people who are getting care at home have higher hospitalization rates than those in nursing homes. 

“That makes some sense because you just don’t get the intensity of care at home as you would get in a facility. There may always be a need for nursing homes. … Even as we move toward more home-based care … we still need to invest in and keep trying to improve the quality of care and quality of life that people get in a nursing home,” she says. 

Bogan says the last place she wants to end up in is a nursing home, and she’s sad to see her mom there. 

She notes that there are ways to make current nursing home residents feel more comfortable there during this pandemic, and she’d like to see at least one family member be allowed to suit up in personal protective equipment and visit their loved one in a nursing home.  

“It would mean all the difference to my mom, if at least one of her adult children could come in and touch her and hug her, kiss her if we could. But at least, even if we couldn’t have physical contact, at least to be there,” she says. “And many states have implemented those types of essential caregiver policies. And I would definitely like to see California do that if it would mean a world of difference. Having family in the nursing homes really, I believe, increases the quality of care.”

Bogan says family members are nursing home residents’ “watchdogs” and advocates. 

Meanwhile, she adds, isolation is causing a lot of problems for the elderly. “As we try to protect them from COVID, we have this other whole thing going on that’s causing harm to them emotionally. And it’s showing up physically as well. Many are losing their desire to live and many of them are not thriving as they were when their loved ones were with them.”