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Four Months That Left 54,000 Dead From COVID in Long-Term Care

The oral history of an American tragedy

 

In one of the most devastating health debacles in our nation’s history, some 54,000 residents and workers in long-term care facilities died of causes related to the coronavirus within four months of the first known infection. That death toll has since crossed 100,000. Here’s the story of what happened this past spring, in the words of those who were there.

ON FEB. 29, a science and health website called Stat broke the news that “the new coronavirus” had surfaced in a long-term care facility outside Seattle. The headline hinted at the chaos to come: First COVID-19 Outbreak in a U.S. Nursing Home Raises Concerns 

With its stately evergreens and five-star federal ratings, the Life Care Center of Kirkland appeared to be in top form. But within a matter of days, 27 of the 108 residents and 25 of the 180 staff started showing symptoms of a mysterious illness already rampaging through 46 countries, with more than 85,000 cases worldwide.

Whatever this wretched plague was, nursing homes would soon bear the brunt of its impact. By the fourth week in June, at least 54,000 residents and workers had died from the coronavirus in nursing homes and other long-term care facilities in the United States. Nearly 264,000 people were infected across 9,912 facilities.

One statistic stands out: Residents of long-term care facilities constitute less than 1 percent of the U.S. population, yet 43 percent of all COVID-19 deaths through June occurred in those places. The number has changed little since.

For the residents, nursing assistants, doctors, families, administrators, public officials and “last responders” on the front lines, numbers alone cannot capture the terror, frustration, exhaustion and occasional miracle story that occurred during the early months of the crisis. In their own words, here’s how the situation unfolded during those first 18 weeks, up to the point in late June when newly reported COVID-19 cases in nursing homes began to stabilize.

But make no mistake: COVID-19 wasn’t vanquished from nursing homes in June. By Thanksgiving, the death toll in America’s long-term care facilities had surpassed 100,000, and each and every site is still grappling at this very moment with providing safety and care to its residents and workers as the pandemic continues unabated.

February

Outbreak

Nancy Butner (Life Care’s northwest divisional vice president): I’d heard in January and early February that there was a virus out there. It sounded like you could get it if you traveled to China. I wasn’t worried about it.

Cami Neidigh (daughter of Life Care resident Geneva Wood, 91): Mom went into Life Care for rehab in mid-January after she had a stroke. She was supposed to be discharged in early March, but she fell and broke her hip the last week of February. That was right when everyone around her started getting sick.

Life Care resident Geneva Wood: My roommate was coughing. Everybody was saying bronchitis. Then I got a cough and could hardly breathe. Thought it was pneumonia. I remember them saying I had a 102 fever. I guess I didn’t know enough to be scared.

Cami Neidigh: You’d walk down the hallway and half the staff were wearing masks and half weren’t, so you didn’t really think it was that serious.

Life Care VP Butner: We had no idea how bad things were. We’d seen flus before. This was different. Flus have symptoms. Our nurses were listening for a labored dry cough and breathing problems. What we didn’t understand was how many people were asymptomatic.

Nurse: “She’s running a temp. We think she, um.... This is the place that has coronavirus ...”

— a 911 call from Life Care on Feb. 29, regarding ailing resident Loretta Rapp, 79, who was among the first U.S. nursing home patients to die from the virus

Timothy Killian (Life Care spokesman): We all grew up with these movies about pandemics, in which the government vans swoop in and take control. As the situation escalated and the facility went into lockdown and people started dying, I kept expecting some type of coordinated response, but we saw nothing of that nature.

Seema Verma (administrator, Centers for Medicare & Medicaid Services): When the situation emerged at the health care facility in Seattle, I called the vice president’s team. We were very concerned. I really wish we had had more and better information from China in terms of the impact on elderly people. That was a key missing piece that would have made our jobs a little bit easier on the front of it.

Cami Neidigh: Mom got better, thankfully. She’s a tough old Texas broad. But Mom’s roommate didn’t make it.

Geneva Wood: It was a lot of prayer — and potato soup. That’s all I could eat.

geneva wood age 90

Photo by David Ryder

Geneva Wood, 91, survived the COVID-19 outbreak at Life Care Center of Kirkland. Her roommate did not.

February–March

Hot Spots

On Feb. 29, the Seattle & King County Public Health Department announced America’s first COVID-19 nursing home death (a Life Care resident). Days later, tests confirmed that two other residents had died of the virus on Feb. 26. Over the coming weeks, 100 residents — almost the entire population of that facility — would test positive for the virus, and 37 would die.

Life Care VP Butner: Night shift was the worst. That’s when patients would decline. The emotion was like a bomb going off in your nursing home. We’d cared for these patients for years, and all we could do was pick up the pieces.

Spokesman Killian: We had 20 news trucks in our parking lot. Everybody was pointing fingers and laying blame, looking for what we did wrong. Meanwhile, this thing was spreading.

'North Carolina Coronavirus Case Linked to Washington State Nursing Home'

— 'New York Post' headline, March 3, 2020

Lori Porter (cofounder of the National Association of Health Care Assistants, which represents 26,000 certified nursing assistants, or CNAs): The texting started and it didn’t stop. My CNAs around the country were worried. The virus was popping up in Michigan, in New York. Are we in danger? Should we go in to work tonight? Tell us if it’s safe. Is this a hoax? Where can we can find PPE [personal protective equipment]? No one was even talking about testing.

Danielle Ivory (New York Times investigative reporter): We literally started with a spreadsheet when cases started appearing, a totally manual collection effort. We were going state by state, calling county officials and medical examiners’ offices, verifying lists on Twitter, just trying to gather this information, because nobody at the federal level was organizing these numbers. So many of the cases were nursing home residents and staff.

seema verna speaks at a coronavirus task force press briefing

Michael Reynolds/EPA via Getty Images

Seema Verma with President Trump.

CMS' Verma:  The vice president asked me to join the coronavirus task force. We had geriatricians, surgeons, infectious disease doctors working day and night to put guidelines together. For me this was a life-and-death issue. We knew every single day could make a difference. And keep in mind, nursing homes were only one piece of it. The CMS has jurisdiction over the entire health care system.

Elaine Ryan, AARP’s vice president of government affairs for state advocacy: Early on, there was a lack of prioritization for nursing homes. Hospitals were seen as the epicenter of the crisis — but the epicenter of deaths was nursing homes.

Nursing advocate Porter: We had nurses using trash bags as gowns, bandannas, anything they could tie around their faces. They’d go home and sew buttons on homemade face shields. They just weren’t getting the equipment.

CMS’ Verma: Nursing homes were always high priority. Originally, states weren’t necessarily getting PPE out to the nursing homes, which is why we changed that strategy. FEMA [the Federal Emergency Management Agency] started directly sending supplies to the nursing homes, and I think that made an incredible difference.

Nursing advocate Porter: FEMA? We had one nursing home in Oklahoma that received condoms from FEMA as PPE. Condoms!

AARP's Ryan: It was stunning to see that at the start of the pandemic, there was quick action to dismiss college students from campuses, to close down basketball games because these were congregate settings. Yet nursing home residents were ignored. No one suggested moving them to safer settings. As I see it, the problem was ageism.

The Lockdown

On March 13, the day President Trump declared a national emergency, CMS issued guidance for infection control and prevention of COVID-19 in America’s nursing homes. This included recommendations to restrict nearly all visitors — loved ones as well as most ombudsmen and nursing home inspectors.

CMS’ Verma: The lockdown was a heartbreaking decision. Many of us have friends and families in nursing homes. But we approached this issue to think about safety, and also about the quality of life for these residents.

Bill Medina (son of Pedro Medina Gonzalez, 81, a resident of the Symphony of Orchard Valley assisted living facility in Aurora, Illinois): I heard about the shutdown from the news. I swung by the nursing home to see my dad like I did every day, but was told I wasn’t allowed to come in.

Sherry Perry (CNA at a facility in Lebanon, Tennessee): They locked the doors, and it was on us to figure things out. Thirty-four years on the job and I was now flying blind. These residents touch us. We roll them, toilet them, take care of them. You can’t really social distance in a nursing home.

Alison Lolley (Lolley moved her 81-year-old mom, Cheryl Fink Lolley, into The Oaks, a nursing home in Monroe, Louisiana, on the last day of 2019. This is from her statement to the House Select Subcommittee on the Coronavirus Crisis): Mama was in a wheelchair, but her mind was as sharp as a tack. My heart just sank when they restricted visitation. We were to visit from outside the facility, behind an air-conditioning unit in a wet, mushy area, while trying to see her clearly through a window screen, all the while trying to compose ourselves and exhibit stability for Mama.

“At this time, we have a single confirmed case of COVID-19 in one of our centers. We are working diligently to minimize potential spread, but are also preparing should any more of our facilities experience the coronavirus.”

— Richard Feifer, M.D., chief medical officer for Genesis HealthCare, America’s largest nursing home conglomerate, in a March 17 call with investors


Toby Edelman (attorney with the Center for Medicare Advocacy): The situation in nursing homes became horrible. Overnight we lost transparency and accountability. After CMS waived the 75-hour training requirement for nurse aides, many states allowed staff to provide care after just an eight-hour online training program. Workers are sick, they’re dying, taking care of their own families. New staff are needed because residents need care. But eight hours?

Alix Handy (her mother, Lona Erwin, 86, died of complications from the virus on March 18, just 3½ hours after Handy learned COVID-19 had entered the Family of Caring nursing home in Montclair, New Jersey): The hardest part was, my mother died alone. I don’t blame the nursing home for her death. I do blame them for how they handled the communication. If they had admitted to me that they had COVID in the facility that morning, I would have insisted I see her. I don’t know what her last 24 hours were like, and that really bothers me.

Phyllis Scantland (her husband, Bill, 84, has Lewy body dementia and lived in Golden Living Center in Mishawaka, Indiana): I did the window visit, and that was a disaster because all he was trying to do was get to me. I wrote “I love you” on a piece of paper, and he said, “Don’t do that to me!” He tried getting out of his chair to get to the door. And then he just cried.

March–April

The Map Explodes

By March 27 — just four weeks after the first case showed up in Washington state — more than 400 long-term care facilities were reporting COVID-19 cases. A Maryland facility reported two confirmed cases on March 27, then 64 confirmed cases the next day. Within days, 77 of its 95 residents had tested positive for the virus.

William LaCorte, M.D. (medical director for several New Orleans–area nursing homes): The systems were overwhelmed. Our nursing home patients would go to the ER and hospitals would say, “Don’t admit. Send them back to the nursing home.” I went nuts. “You’re sending Typhoid Mary back to infect other people?” For every patient they sent back, we probably saw 10 more residents, staff or family members get infected.

“DOUBLE-TIME PAY RATE and $2,500 sign on bonus. All shifts available.”

— online job posting at Canterbury Rehabilitation & Healthcare Center in Richmond, Virginia, where at least 46 residents had died of the virus by mid-April

Laurie Facciarossa Brewer (New Jersey’s long-term care ombudsman): The calls from concerned families shifted from “I’m told my mother has a fever, but nobody’s calling me back” to “I was told she was stable and 90 minutes later I got a call that she was dead.”

New York Times reporter Ivory: By early April, we had identified more than 36,000 cases and more than 7,000 deaths in nursing homes.

Bernice Stafford-Turner (her brother, Fred Stafford, 66, a resident of Canterbury in Virginia, tested positive for COVID-19 but was asymptomatic): One of my biggest concerns is: OK, Fred tested positive. What is the facility doing? What is the plan? How many people have to die from this facility for them to realize you need to do something different?

Andover Township, New Jersey, Police Chief Eric C. Danielson (quoted April 15 after a tip turned up 17 bodies in a makeshift morgue at Andover Subacute and Rehabilitation Center): “The staff was overwhelmed by the number of bodies that were becoming deceased.”

Phil Murphy (D) (governor of New Jersey, on April 16): “New Jerseyans living in our long-term care facilities deserve to be cared for with respect, compassion and dignity. We can and must do better.”

Dear Family Member: Today, we have been notified that an employee has tested positive for COVID-19. Please join us in praying for a speedy recovery.

— letter to Alison Lolley from director of operations at The Oaks, dated April 13, received April 17

Alison Lolley: I began to see vacillating practices by the staff and facility, and Mama began to look disheveled. She would gently complain that “things didn’t seem right,” and on more than one occasion, she shared that she “was not fed a meal all day.” I texted the director of operations and was told the RN had been slammed with nonstop calls and that they were doing their best to return calls as quickly as possible. I began asking questions. Unsolicited, the director told me that while she could not guarantee anything, she felt confident that they were “past it.”

Betsy McCaughey (former lieutenant governor of New York who founded the Committee to Reduce Infection Deaths, quoted April 17 ): “One COVID-positive patient in a nursing home produces carnage.… They’re death pits.”

Judith Regan (publishing executive quoted that week about her 91-year-old father, Leo Regan, a resident at the Long Island State Veterans Home at Stony Brook University, where 32 residents had died): “The residents and staff are being led to slaughter. He is on the Titanic, but there are no lifeboats.”

“We need everybody to stay away!” 

— Wayne Claw, chief executive of Dr. Guy Gorman Senior Care Home in Chinle, Arizona, quoted about the facility’s 73 Navajo elders who remained COVID-free in a population otherwise devastated by the virus

Faith Heimbrodt (her mother, Carol Orlando, 79, was a resident of the Geneva Nursing and Rehabilitation Center in Geneva, Illinois, a 91-bed facility with at least 145 reported COVID cases and 30 deaths among residents and workers): I last saw my mother in person on April 23. She wasn’t well, but they assured me she didn’t have COVID. She died on April 25. I called to request an autopsy and they called back and said, “We can’t touch her body. There’s a positive COVID-19 tag on her bag,” though she hadn’t been tested at the home. Her body tested positive five days later.

Alison Lolley: Our family watched Mama deteriorate. She complained of lack of care, and “manhandling” from people in her room that she didn’t recognize. During one visit to her window, I found Mama unclothed, unkempt and confused. I reported these issues and received boilerplate explanations or promises to handle it “immediately.”

Bill Sweeney (AARP’s senior vice president for government affairs): Over 6,000 people reached out to AARP across the country with absolutely devastating stories about what happened to their loved ones. Seeing a family member emaciated. Finding them lying naked. This isn’t simply coronavirus-related. This is shining a light on a broken nursing home care system that’s lacked adequate attention for years.

Alison Lolley: Mama was transferred to the hospital on April 23 and admitted to the COVID unit. She died there on April 29 at 5:05 p.m. Mama died alone, and my family will forever be scarred by this tragedy.

alison lolley holds open a photo scrapbook that contains pictures of her mother

Photo by Craig Mulcahy

Allison Lolley, standing outside the nursing home where her mother, Cheryl Fink Lolley, died of COVID-19, decries nursing homes "bottom line' emphasis.

The Rev. Michael Way (Christ Episcopal Church, Middletown, New Jersey): I received a call about a parishioner with coronavirus and advanced Parkinson’s. They thought he had days, if not hours, to live, and I was asked to offer him last rites outside the window to his room. He seemed to be conscious to the extent that I could see his lips moving when I said the Lord’s Prayer. Other than that, he was not communicative or responsive in any way. I found out a couple months later that he beat all of the odds and actually recovered from COVID-19.

Funeral director Carol Williams (executive director of the National Funeral Directors & Morticians Association): A nursing home in Atlanta had two couples pass away. Their families can’t have the funerals they want to have for their loved ones. We’re not having church services because all the churches are closed. You’re trying to help these families, but sometimes you have to walk away and sit in your office and cry because you’re helpless.

"That’s a spot that we have to take care of. I guess you could call it a little bit of a weak spot, because things are happening at the nursing homes and we’re not happy about that. We don’t want it to happen.” 

— President Trump, April 30, announcing the formation of a special nursing home commission to better prepare the industry for future outbreaks in the wake of the COVID-19 death toll

May

Protect Thyself

With 20,000 coronavirus deaths and counting, America’s nursing homes waged a massive lobbying effort to shield themselves from lawsuits. By early May, at least 15 states had laws or governors’ orders in place to prevent legal action against these facilities.

AARP’s Ryan: Remarkably, while people were perishing in nursing homes, the biggest effort by the industry bigwigs was making sure they weren’t held liable for those deaths.

Medicare advocate Edelman: The push for nursing home immunity was shocking. We already had no oversight and no family coming in. Now it was anything goes. Residents were not getting bathed. They had bedsores. We were hearing about 30-, 40-pound weight losses. And the psychological harm from isolation was devastating.

Anita Martin (her mother, Marlene Cowans-Hill, 72, died on May 15 after contracting COVID-19 at the Bloomington Rehabilitation & Health Care Center in Bloomington, Illinois). She was calling and crying because she was hungry all the time. It got so bad that my mother told me somebody was selling her bags of popcorn for a dollar. I asked the facility, “Who’s selling my mother popcorn in a nursing home? She’s a dialysis patient.”

Edelman: COVID-only facilities collect hundreds of dollars a day per resident, on top of other reimbursement. The financial incentives led to other residents being discharged inappropriately and sent to motels with nothing, or homeless shelters, or — worse — onto the streets. And the workers are still underpaid and risking their lives.

Chris Brown (CNA at a Chicago nursing home): If I work sick, the virus could spread like wildfire. If I don’t come in, I risk not being able to pay my bills. I have to choose between keeping the lights on or protecting my health. Nursing home workers like me have been put in a lose-lose position, something we must change.

“We can’t keep everyone alive.”

—New York Gov. Andrew Cuomo (D), responding May 17 to criticism of his administration’s handling of nursing homes during the pandemic

Anita Martin: I found out my mother had a slight fever and her oxygen level was low, so I made the nurse call 911 while I stayed on the phone. It hurt me because when they were asking about her vitals and if she was changing colors, the nurse chuckled and said she didn’t know because my mother was African American. 

New York Times reporter Ivory: We were shocked to find that the nursing homes with significant Black and Latino populations — no matter their location, size, government rating or infection history — had been twice as likely to get hit by the coronavirus as their mostly white counterparts.

Bill Medina (whose father was transferred to a hospital on May 5 and died there May 11): They called me on a Saturday while I was at work, and they told me he probably doesn’t have much time, if you’d like to see him. They provided me with full PPE. I held his hand as he passed. These COVID deaths are more than just numbers. My father ran a muffler shop. Back in the early ’80s, he was a personality for Spanish radio. I’m just thankful that I was with him at the very end.

The reverend doctor derrick de witt stands outside a building wearing a mask

Photo by Scott Buchman

“We’re used to being the last to get help if and when it comes. We knew that when the virus came we had to take care of ourselves, because no one else would.”

—The Rev. Dr. Derrick DeWitt Sr., pictured above, commenting on the Maryland Baptist Aged Home in Baltimore, the oldest Black-owned nursing home in the state, which remained COVID-free

Where’s the Relief?

On May 22, the U.S. Department of Health and Human Services announced nearly $4.9 billion in additional relief funds to skilled nursing facilities.

AARP’s Ryan: In my 30-year career of advocacy, I have never seen anything like this. Months after billions of taxpayer dollars were sent directly to nursing home owners, tens of thousands continued to die in their care. And reports of inadequate PPE, no testing of residents or staff, and infections and deaths continue. Which nursing homes received extra funding and what have they done with it?

George V. Hager Jr. (CEO of Genesis HealthCare, reporting on May 27 the receipt of more than $360 million in government relief. At the time, Genesis had 1,500 deaths and 6,700 more confirmed COVID-19 cases among residents, in about half of its 361 care facilities): “As a nation, we are facing the most significant pandemic of modern times, and nowhere has this challenge been more readily apparent than in skilled nursing facilities.”

June

A Landmark Toll

Nursing advocate Porter: As spring turned to summer, we all just felt numbed by what was happening. COVID-19 had not only ravaged nursing homes, it made working in these facilities the most dangerous job in America. But what choice did we have?

“OK, guys, so we got 260 swabs we’re gonna do here today. It’s 200 staff and 60 residents. We got y’all divided up in your teams already. Be safe, take care of each other, and stay clean.”

— paramedic Lt. Travis Hopp, part of the Texas strike force attempting to protect the state's 1,222 nursing homes, quoted June 15 on NPR

New York Times reporter Ivory: Around early June, the federal government finally started putting out data on nursing homes, but they weren’t requiring nursing homes to report any cases or deaths that had occurred before May, which in our minds essentially missed the worst part of the outbreak in much of the country. We may never know the true toll.

Michael Brown (His mother, Nina, 87, tested negative in late May as a resident at Crofton Care & Rehabilitation Center, in Crofton, Maryland. By June 1, she was in an isolation unit with a fever, vomiting, pain and a positive test result): It’s frustrating and actually deplorable. I have no confidence she’s protected.

Alison Lolley: I’m going to spend the rest of my life making sure nursing homes have the same type of governance, oversight, oath and responsibilities as a hospital, because nursing homes make a lot of decisions around the bottom line — and not the care of life.

CNA Perry: Even in facilities that haven’t lost anyone to COVID, we see the decline of patients. Something as simple as getting up and going to the dining room or singing a song in a group. When that’s taken away, it’s devastating. We’ve had people pass away recently, and while COVID the disease didn’t take them, COVID definitely played a role.

New York Times reporter Ivory: In late June, when our revamped nursing home tracker published, we’d crossed the 50,000 mark with fatalities in nursing homes. That landmark number really stops you. Those are parents, grandparents, friends — not just numbers.

FEDERAL DATA SHOWED 5,468 new COVID cases in U.S. nursing homes during the week of June 21, the lowest weekly tally since the federal government began to collect such data in May, suggesting the emergence of some stability in the situation.

Life Care's Butner: You walk by rooms and residents are no longer there. It’s so, so sad. There are a lot of things that we didn’t do well. But when you go through a tragedy like this, all you can do is learn and do better. I wrote a letter to COVID. It was my therapy.

Dear COVID-19,

You have changed my life. You have pushed me beyond my limits. You forced me to do more than I thought I could do. At times, we didn’t know how we were going to get through. We figured it out, shift after shift. Unfortunately, there were some forces against us besides you. I wish I had done some things differently. But we made the best decision with the knowledge and resources we had at the time.… There is one thing I know for sure. We fought against you and we won! Just over 30 days after you arrived, you left Life Care Center of Kirkland. This gives me the fuel to keep up the fight.

Alison Lolley: If I had one message to share after all this, it’s: Reform this industry, properly fund this industry, and do it quickly! Please don’t allow my mother to die in vain.


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