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It’s Time for an End-of-Life Discussion About Nursing Homes

by | Jun 26, 2020 | New, News

Be the change that you wish to see in the world.

— Mahatma Gandhi

Some of the most shocking stories of coronavirus come from one particular setting: nursing homes. People unable to contact their parents or loved ones; bodies piled up in makeshift morgues; nurses without protective equipment abandoning their posts; those who are still alive left alone in squalor for days. It’s not hard to see why the deadly pathogen hits these places hard. Residents are usually old and often immunocompromised; they’re housed in close quarters; and they share community and dining spaces. Indeed, the AARP estimates that at least 43,000 nursing home residents and staff have already died from Covid-19, which would represent about one-third of all known pandemic deaths in the United States. In New Jersey, about one in every eight people who live in nursing homes has now succumbed.


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Even before the pandemic hit, nursing homes seemed like an odd, collective compromise. Most American adults, in a survey from two years ago, said they wouldn’t want to leave their homes or communities as they aged—and most also didn’t envision that they’d ever end up doing so. In 2016, 1.3 million Americans were residents of nursing facilities. “It's considered completely normal that we would take an individual and force them to give up their home, their family and their life and place them in this institution. We just take that as a given,” says Bruce Darling, an organizer with Rochester ADAPT, a disability rights organization. He and other advocates are wondering if now, finally, in the face of coronavirus, people might reconsider these spaces altogether.

The present chaos and horror in nursing homes should come as no surprise. In 2018, 11 children died in a nursing facility in New Jersey from an adenovirus outbreak. A contagious fungus has meanwhile infected over 800 nursing home residents over the last few years, killing half of them. Tom Chiller, a fungal expert at the U.S. Centers for Disease Control and Prevention, called nursing facilities “the dark underbelly of drug-resistant infection.” In 2014, a New Mexico nursing home was struck by an outbreak of Clostridium difficile that killed eight residents. These outbreaks happen to be among the ones we know about. As a Reuters investigation showed, many such events in nursing homes never get reported at all. Infectious diseases have spread in these settings before, and they will continue to spread in the future. “Coronavirus has reinforced what we've always known,” says Darling, “but it's actually got other people’s attention because it's because it's now something that kills people outside the institution.”

In the short term, organizations are trying to push for changes to the day-to-day protocols at these places to keep residents safe today and in the future. The AARP is calling for more transparency in how Covid-19 cases are handled, and asking locked-down facilities to provide digital visitation services. Megan O’Reilly, the Vice President of Government Affairs of Health and Family at AARP told me that these digital tools are important not just for keeping families connected and residents from feeling afraid and alone, but also so that friends and relatives can keep an eye on the conditions inside the homes. “It's a safety measure,” she says. “It's an extra set of eyes.”

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David Grabowski, a professor of health care policy at Harvard Medical School, proposes a wholesale restructuring of the nursing-homes industry. “We have been underinvesting in nursing homes for many years,” he says. “This pandemic has just brought this underinvestment into broader view.” In particular, he echoes AARP’s call for increased transparency around the conditions and ownership of each facility, and proposes better treatment and pay for the staff who work there.

Such measures seem all the more important in light of recent news reports that residents at nursing homes are now more likely to be evicted—pushed out to boardinghouses or homeless shelters—in order to make room for those who test positive for Covid-19 and bring in higher Medicare payments.

ADAPT is pushing for nursing homes to allow residents to leave of their own accord, and find safer homes in the community. “If the local nursing facility were on fire, we'd be rushing to get people out. If there were a hurricane coming, people would be told to evacuate and get to safety. But what's happening right now is […] we're watching people die in these facilities and we're not doing anything about it,” Darling says.

The organization has a more ambitious goal, too: ADAPT has long called for the elimination of most long-term nursing facilities. They argue that residents of long-term care facilities often end up there not because they want to, but because they have no other viable options. Very often, that puts them at a higher risk of getting sick. Even before the pandemic, between 2013 and 2017, 82 percent of nursing homes in the United States were cited at least once for failures to prevent or control infections, according to the U.S. Government Accountability Office. And it’s not just the “bad apple” nursing homes that have been hit hardest by Covid-19. Data suggests that nursing homes with low ratings, as determined by the Centers for Medicare & Medicaid Services, are faring just as well (or badly) as any other.

Instead of housing people in congregate settings, ADAPT and other activists argue that better outcomes can be achieved by supporting people in small group homes of 2 to 4 people; or even better, by supporting them in place. Mike Ervin, of The Progressive, pointed out to me that most data suggests that home-based care is cheaper than nursing homes, in the long run. The Money Follows the Person program, for example, has demonstrated that on average, when someone moves from a nursing facility into the community, their overall Medicare and Medicaid expenditures drop by 20 percent. Even if it weren’t cheaper to deinstitutionalize, Ervin argues that it would still be the right thing to do. “So what if it was more expensive? It doesn't mean that they deserve to be locked up because something costs more money.” As disability advocate Alice Wong recently wrote, “freedom to live in the community is a human right.”

The concept of placing aging and disabled people in largely private facilities like this hasn’t been around all that long. Through the middle of the 20th century, older folks were more likely to spend their final days at “rest homes” such as The Winchester Home for Aged Women in Charlestown, Massachusetts. These tiny facilities generally housed 30 to 50 people, often from similar economic and social backgrounds, and they were generally run by philanthropists. Nursing homes, as we know them today, didn’t really take off until the 1950s, when the Hill-Burton Act allowed public money to be used to build them. Between 1960 and 1974, the nation’s expenditures on nursing homes in the United States grew by 1,400 percent. A 1969 article in Barron’s noted the boom:

Of late . . . [a] kind of frenzy seems to grip the stock market at the merest mention of those magic words: "convalescent care," "extended care," "continued care.'' All euphemisms for the services provided by nursing homes, they stand for the hottest investment around today. . . . "Nobody,” a new-issue underwriter said the other day, "can lose money in this business. There's just no way."

Today, the domestic nursing home industry is huge. According to the CDC there were 15,600 facilities in 2016, about two-thirds of which were for-profit. According to one market research firm, the global long-term care business will be worth $1.7 trillion in 2027. In the U.S., nursing home lobbyists have already gotten to work seeking immunity from Covid-19 related lawsuits, asking for billions in federal relief funding, and resisting additional oversights and regulations that might be imposed on them.

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As stories flood in about nursing homes across the world fumbling their response to the coronavirus, ADAPT and other advocates hope that this could be a moment to consider how the industry could be improved. The organization hopes that Congress will consider adding the Disability Integration Act—which protects the right for both disabled and older Americans to live in the community—to future Covid-19 relief bills.

As we face a long and uncertain road to recovery, it’s unlikely that nursing facilities will be fully safe for residents or staff in the near- or even mid-term future. And as we’ve seen with the current outbreak, all it takes is one infected person to decimate an entire community. “Even when it's not spreading significantly in the general public, it will still be an issue for us in the nursing facilities,” Darling says.

Some envision the future of nursing homes as a kind of hybrid between ADAPT’s at-home vision, and the current large-scale institutions. “My hope is that the nursing home of the future is somewhere we would all be willing to go to if the need arose,” says Grabowski. “I would envision nursing homes that are smaller, home-like settings that are more resident-centered.”

What does the future of these homes look like? When will they reopen? Will they have to reduce their capacity, change their layouts, require testing for anybody who comes into the facility? Will non-vaccinated family members be barred from the premises? The answer to these questions is still unclear. If one must find a silver lining to any of this, it could be an opportunity to reimagine these spaces in new ways that better support the needs of older adults.

The activists know it won’t be easy to turn this ship around, but they hope that the pandemic pushes people to reconsider things that once seemed normal, and wonder if they have to be this way. “There's nothing natural about this,” Ervin told me. “It's just how we've been trained to look at things. And we can start looking at it differently.”

Photographs: Robin Utrecht/Getty Images; Luka Dakskobler/Getty Images; Jasmin Merdan/Getty Images

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