Into Tracking Coronavirus in Nursing Homes
Trymaine Lee: It feels like a lifetime ago, but one of the earliest outbreaks of coronavirus here, in the U.S., began at a nursing home in Washington State. On February 28th, a resident of the Life Care Center in Kirkland, Washington tested positive for COVID-19. By mid-March, at least 81 residents, 34 staff members and 14 visitors had contracted coronavirus. Dozens of deaths have been connected to this outbreak. The World Health Organization now estimates that up to half of the people who've died from COVID-19 in Europe were residents in long term care facilities, and that analysis from the Kaiser Family Foundation indicates that that pattern is reflected in a handful of U.S. states as well. And yet, months into this crisis, the federal government still has not released any data tracing the outbreak in these nursing homes. I'm Trymaine Lee, and this is Into America. Today, we're going into the country's long term care facilities, to understand how a lag in data collection has allowed the spread of coronavirus to spiral out of control.
Suzy Khimm: I think folks are really still scratching their heads about why this was not made a priority.
Lee: Suzy Khimm is a national investigative reporter for NBC News. In the absence of federal data, Suzy and colleague Laura Strickler began tracking the number of COVID-19 deaths in nursing homes across the country. For Suzy, this wasn't just an assignment. Just weeks into the crisis, the numbers became personal.
Khimm: But it really did not hit home until I discovered and heard about exactly the same problems inside my father-in-law's nursing home. And then realized if it's happening there, it is definitely happening elsewhere.
Lee: Suzy Khimm and her husband, Benjy Sarlin, met as journalists in Washington, D.C. Benjy is a policy editor for NBC, and they've been married for six years.
Benjy Sarlin: Yeah, we have a two-year-old named Parker.
Khimm: So we have definitely had our hands plenty full during this quarantine period of our lives.
Lee: Speaking of family, Benjy, tell me about your father, Bob Sarlin.
Sarlin: My dad's just a great guy. He's just really kind, he was always like the dad your friends love, you know. Especially when I was in high school and college. He had a very long varied career. He worked in the music industry, first as a rock journalist, he wrote for Rolling Stone, The Village Voice. That was all before I was born though. So when he was, you know, my dad, he'd moved on to advertising. He recorded a McDonald's ad with Patrick Ewing when I was a kid, who was my all-time hero.
Lee: You guys are New Yorkers, so that was a big deal.
Sarlin: Oh, yeah, I mean, we're huge New Yorkers. So that was my favorite one of those.
Lee: When they first met, did you get a sense of whether your father was into Suzy or not?
Sarlin: Oh, my dad loved Suzy. They hit it off, like, right off the bat.
Khimm: First, you know, kind of standard question I always ask him is, "So what are you reading?" It could be anything from history to mystery novels. He's such a storyteller. I mean, you just get him going, and his memory is just incredible.
Sarlin: Then in November of 2012, he had a serious stroke. Woke up in the morning, and he turned to my mother, said to call an ambulance. And he was rushed over for emergency brain surgery. He'd lost pretty much all function on his left side. It took us a while to realize gradually that he was not going to be one of those miraculous success stories, where you get your old self back.
Lee: Do you recall the moment when the family realized that we have to find a place for Dad, we have to find somewhere that can give him the care that he needed?
Sarlin: The trouble is that he's just a very big guy, and it was just very hard finding consistent aides who could physically handle him. And you know, my mom's a little five-foot-three lady. It's like, she could only help out so much. We realized at a certain point that he just needed more professionalized care than he could get at home.
Lee: In 2014, when Bob Sarlin was 68, his family moved him out of the apartment where he'd lived for four decades, and into the Mary Manning Walsh Nursing Home in Manhattan, owned by an organization called ArchCare. The family continued to visit, even taking him on field trips around the city.
Sarlin: One of the last times I saw my dad in person was, we went to a Bob Dylan show at the Beacon with my brother and sister, we brought him along. It felt like a really big deal that we even managed to get him there, but you know, just someone who's had this very full life, you know, of just loving music, loving literature, you know, loving history, it was a really moving experience.
Lee: When you first started hearing the reports of coronavirus spreading across the country, and popping up in different nursing homes and long term facilities, were you initially concerned, were you scared? What were your early thoughts?
Sarlin: The thing that was so unexpected and difficult to deal with was just how quick everything escalated. The first confirmed coronavirus case in all of New York State was March 1st. I just had to look it up now.
And the nursing home responded, Mary Manning Walsh, where he lived, they shut down all visitors, I think it was on March 12th. So that's the same time that you remember the sports leagues were suddenly suspended, and the stock market was crashing. And then we got a letter from Mary Manning announcing that they had their first case of coronavirus on March 22nd.
Lee: Would you mind reading a piece of that for us?
Khimm: Sure. "This letter is to alert you that on March 19, 2020, we learned that one or more of our residents developed COVID-19. We are actively monitoring our residents for signs and symptoms of COVID-19, and are working with our state and local health departments."
Lee: One or more.
Khimm: Yeah. Yeah, I mean, I think this is sort of a moment that I was both dreading and also basically expecting to happen the whole time.
Lee: And so ultimately, you get this letter, what happened next?
Khimm: My mother-in-law knew the administrator, so I reached out to him a couple of days after we got that letter. And Benjy and I actually were both on the phone together with him, and he puts me on hold. And he says, "Wait a moment, I have the CEO of ArchCare, and he would like to speak with you as well." I was really surprised when that happened. I had kind of stressed that I'm trying to get information for just our own personal knowledge, this isn't, doesn't have to be on the record for a story.
You know, I'm just trying to get more information, because my family would like more information about what the facility's doing, how well prepared it is. But when he put me on with the CEO, it immediately became clear that this was an emergency situation. And in fact, we were both really shocked to hear the CEO basically begging us to sound the alarm.
Lee: Wow. The CEO is saying, "We need to do something," to you.
Sarlin: It became clear immediately that they were far more desperate to talk to us than we were to talk to them.
Khimm: Basically, he is saying, "We are so desperate for PPE. We do not have enough face shields. We do not have enough gowns. We have been begging state officials, local officials, you know, anything we can do to get PPE for our staff. We do not have enough. If you are able to remove your loved one from the facility, and be able to care for them outside with an aide or family members, that would be a safer place for them to be than inside right now."
Lee: What was that feeling, Benjy, when you hear this from the CEO, the boss of this place?
Sarlin: It was just such a shock. It just felt like the walls were closing in. The whole fight or flight reflex just kicked in from here on in, to being, like, you know, "Hey, I'm worried about Dad," to being, like, "Hey, we need to get Dad out of a burning building." From that phone call on, every minute was basically just devoted to trying to figure out a way to get him out as fast as possible, across our entire family.
We were calling up nursing agencies that we hadn't dealt with, to see if they could provide some kind of temporary care, which would be, you know, extremely expensive, but just to even get him out of there for a couple of weeks, to try to buy us time, to figure out, you know, what to do next.
Amazingly, we seemed to finally get to a place where we had someone scheduled to get him out of the facility that day. We were all set up to go, we had his bags packed, and just as he's getting ready, he starts suffering from breathing problems. And his oxygen level started going down, and he has to get taken to the hospital. And what happened was, he had contracted coronavirus. They tested him there, he came up positive, and that was the end of our efforts to get him out of there. It was just a brutal wave of emotions. And, ah, I was just devastated.
Khimm: And when we found out that instead of this transportation taking him out of there, instead he was going in an ambulance to the hospital, and it was the most wrenching feeling. You know, this feeling like a door was just being slammed in your face. We felt like we had this tiny bit of agency, this tiny window, this narrow, narrow window in which to save him. You know, like, that's what it felt like we were trying to do. We were trying to save him. And then we couldn't. We couldn't do it.
Lee: So you all are going through this nightmare scenario, and this harrowing kind of effort to get your father out, he ends up coming down with COVID-19. And how's he recovering?
Sarlin: Usually, once a day or every other day, I manage to call, and he'd pick up and be, you know, somewhat lucid. And he usually sounded relatively okay, but every conversation was just so loaded, because you didn't know if it's going to be your last. You know, because you just don't know what turn this virus is going to take.
But over time though, his symptoms improved enough that the doctors at the hospital told us he could return to Mary Manning Walsh, and he wouldn't be out of the woods yet, he'd still be receiving oxygen, but at least he seemed to be trending in the right direction enough that he didn't seem to be in imminent danger of suddenly having to go to the ICU.
Lee: There are a lot of people who would say, you know, there's zero chance I'm sending my father back to this place. What gave you all the confidence to say, you know what, we still trust this facility?
Sarlin: I mean, part of it is just that it was happening everywhere. I mean, it's hard for me to feel, you know, like the issue here was this facility, when it's literally thousands of nursing homes all over the country. But also very importantly, their situation did seem to improve.
And I talked to him just a couple hours before this, he was in very good spirits, he sounded like himself. And one of the strange things about this is that because Dad got sick so early in this process, he basically missed the whole thing. So it's, like, "So can I go out to a restaurant then, if I'm okay?" And we had to explain, "Well, every restaurant in the city, and pretty much the country, is closed right now." You know, he's still kind of catching up to everything. So it's been this kind of odd period now of, like, someone who just has walked out of a cave or something, and you have to explain everything that's happened. But he's in good spirits.
Lee: And so thinking back over the past several weeks, Benjy, what has this experience, start to finish, been like for you, engaging with the system this way, caring for your father, and just dealing with everything that's come along with dealing with COVID-19?
Sarlin: I just never thought I'd deal with a situation like this here, in this country, in this city. I just can't get over how quickly everyone was overwhelmed, and the people you normally think of kind of the adults in charge just seemed as overwhelmed as we were. It was really jarring, and I think it's going to be very hard for me just even as, you know, a policy reporter to look at the world exactly the same way. There's just a level of resilience that it turns out our system does not have. And I don't think you can really go back, once you've seen it up close like that.
Lee: And Suzy, what's it been like for you, and how have your eyes been opened through all this?
Khimm: I'm not the kind of journalist who typically ever uses my own personal experience as the basis for stories. That's just not been, you know, the focus of my work over the years. But what I learned, and what Benjy and I both learned in just going through this as a family, the stakes are so high, and this is sparing no community. There's just nowhere to hide from this. And it's been a really disorienting experience, as a journalist as well as just a private individual.
Lee: After the break, how the family's personal crisis prompted deeper and deeper reporting from Suzy. We'll talk about what she learned about the federal government's response, and why it's so important to track data in a crisis like this. Stick with us.
Lee: When Suzy Khimm was first assigned to NBC's coronavirus beat, she thought it'd be short term assignment. When did you actually realize that this was a big story, there was something major happening?
Khimm: I mean, I remember reading about the early kind of nightmare scenario in Kirkland, Washington. So this is the first outbreak that happened in the U.S., which was at this nursing home in Washington State. So that was on my radar. But honestly, my personal experience of going through this journey with my father-in-law, I was pretty shocked to hear the state of things. So I knew that this was a huge problem. This was really an emergency. And follow up reporting really confirmed that.
Lee: Can you give us a quick primer on how nursing facilities are typically run, and what role the U.S. government or taxpayer dollars play in them?
Khimm: Most nursing facilities will accept some combination of Medicare or Medicaid dollars, and in exchange for that, the federal government has oversight over those facilities. Those facilities have to meet certain quality standards, they have to meet the rules for protecting the residents, and making sure the facilities are properly run.
Lee: When did you first try to get ahold of some data around what we were seeing happening in these nursing homes?
Khimm: So in early April, pretty much after Laura Strickler, my reporting partner and I published our initial stories about the PPE shortage, about nursing homes being completely overwhelmed by this crisis. Not getting priority for tests, not getting priority for equipment. We started looking into, okay, so where do things stand nationwide? We knew that the federal government, very early on in the crisis, provided a preliminary number in the low hundreds of the number of facilities that were affected. And we knew that that number was much, much higher, from all of our reporting.
So we started asking around, and basically, we discovered that the federal government was not tracking COVID infections and deaths in nursing homes. The federal government did not know the total number of nursing homes where there were outbreaks. We kept pushing them, asking for that information repeatedly. They said that basically, they weren't tracking that.
Lee: Let's stop right there, and just put like a red flag in that. Because that seems concerning. Let's use that word, concerning that the federal government wasn't tracking the numbers of COVID cases in these nursing homes. When we know that the first cases began in these nursing homes.
Khimm: Yeah. We knew they started in a Washington State nursing home. We knew how bad it was very, very early on. So I've talked to many public health experts at this point who said, "We should have been on this from that moment."
Lee: Is it mismanagement, or are they being intentionally opaque, because they don't want the true reality to be revealed to the American public?
Khimm: The federal government has never provided an explanation for why it was not doing this, only that it wasn't. I do think it's fair to say that this fits into the Trump administration's broader approach towards coronavirus, which is to let the states handle it. And the thing to stress about why this data's important, so as journalists, I think we have a really bias towards transparency. We want this information because we believe that the public has a right to know. And I think that's true, but I think there's a policy reason for it too. You know, the public health experts I've talked to say that, hey, the reason that we need a national picture of what's happening is because we need to know where the help is needed. We also need to understand why is it spreading in certain nursing homes more than others?
Are there factors that leave some places more vulnerable? And so how will we know how to fix the problem or prevent the problem from getting worse if we don't even know the scope of the problem? If we don't even know what's happened so far.
Lee: So with this lack of nationally pulled together data, right, with a lack of that, you had to be kind of intrepid, and go out there and start tracking the data yourself. Walk us through how you did that, and what exactly you found.
Khimm: So basically, we approached every single state health department with the same set of questions regarding the number of facilities that have been infected, the number of people who had died, you know, other kinds of details. And we just put them together in a spreadsheet. We had this spreadsheet that has grown and grown and grown over time, as the numbers obviously keep changing.
When we first started tracking these deaths, and the facilities that have had outbreaks, we got responses from 24 states. That's in total, in those 24 states, more than 2,200 people had died. Since that time, more and more states have been providing this data.
In part, because of the public pressure that folks from the media, from family members, from legislators, others have been putting on public officials for more transparency into the crisis in nursing homes. So now, we're up to 42 states that are reporting coronavirus deaths.
Lee: And in terms of following the data and following the numbers, what are the numbers actually looking like, in terms of deaths associated with these long term care facilities?
Khimm: The latest numbers that we have, as of this week, is that it's over 20,000 deaths.
Lee: Twenty thousand.
Khimm: Twenty thousand.
Khimm: Associated with long term care facilities. And so that is about, I think roughly, a quarter of all known COVID deaths. But many folks, I think, a growing number are expecting the share of COVID deaths associated with nursing homes and long term care facilities to ultimately be higher. And in certain states, you're already seeing that. In Massachusetts, in Delaware, more than a half or more of coronavirus deaths are associated with long term care facilities. So it's a significant number, but again, that's almost certainly an undercount.
Lee: What kind of response has your reporting generated?
Khimm: So my inbox is filled with stories from people directly affected by this, from across the country. I've gotten emails from folks who say that they did not know until their loved one had died that they were even infected.
From staff members, who are going to work every day, despite the risks, and despite lack of PPE. But there's also been a response from lawmakers, from folks in Congress. Our reporting was cited in multiple letters that members of Congress have sent to the Trump administration, demanding greater transparency, demanding greater tracking efforts. And the federal government, since we began our reporting, is in the very early stages, I would say, of actually undertaking that effort. So under the federal rules, facilities are only required to report cases to the family members of the resident who's infected.
So if your loved one becomes infected with COVID, or has a suspected case, that person's family members are required to be notified, but not all the other family members of the facility. So on April 19th, the federal government, in a White House event with top health officials and President Trump, announced that they would finally begin tracking coronavirus deaths and infections in facilities.
And require those facilities to report cases to all familiar members. So those new rules were unveiled with great fanfare weeks ago, nearly three weeks ago at this point. There's been weekslong delay in that time, in the three weeks that the federal government waited to put these rules into effect. According to our count, 13,000 people have died. But that data is actually not going to be released until, they estimate, the end of the month. So we won't actually have a comprehensive picture until the end of May.
Lee: Well, what are they saying? So you have thousands and thousands of people are dying across the country. We know where these outbreaks continue to spread, in these very vulnerable populations, but they're just saying, "Hey, we're trying," are they not saying anything? What response are they giving?
Khimm: The response we initially got was, "This will happen very soon, within days." Then we followed up, "Hey, is this happening?" "No, it's actually not happening." The federal government also promised, on April 30th, that they would send, through FEMA, PPE, one week's supply of PPE to every single nursing home in the country. So far, the latest we've heard is that 5% of those shipments have been received. One thing that I did hear from one of my sources, a health policy expert at the Kaiser Family Foundation, was that the federal officials couldn't decide who was going to take the lead.
But you know, the question still lingers there, though. Okay, I understand that bureaucracy can get in the way. There are technical questions that need to be answered, but this is an absolute emergency. People are dying across the country. Tens of thousands of them are dying. Millions of family members are wondering, is my loved one safe?
Lee: What do you think it says about us, as a society, and who we value, and what we place our value in?
Khimm: Obviously, the absolute frontline of this crisis was always going to be hospitals. And it makes sense that they should have priority for things like PPE, for things like testing, for federal attention and dollars. But we've made a decision not to make folks who live in nursing homes and long term care facilities, and the families who love them, and the staff who work there, we have decided not to make them the most urgent priority. I think that's clear.
You know, this is the consequence of a lack of planning, and the consequence of a lack of preparation. And effectively, this is what's happened. They've been delegated to a lower priority, and we've seen the tragic consequences of that.
Lee: What advice would you give for other people out there, who have family and loved ones in nursing homes, who are just dealing with the uncertainty, and the fear and the concern over COVID-19?
Khimm: I think that my advice would be try to get what information you can, so yeah have an idea of what you know and what you don't know. And that there are folks that you can appeal to, not just inside a facility, and the facility may or may not be super cooperative, but folks on the local level, and the county level who may also have concerns and who may be able to provide at least some visibility into what's happening.
But I also think it's also worth acknowledging what you can't control. Because otherwise, you feel paralyzed. And at least, that was the approach that I tried to take, is to figure out what I could know, and then just kind of learn in a way to accept what I couldn't know, or I couldn't control.
Lee: Suzy, thank you so much. This is really important work, and you've done an amazing job, so thank you very much for joining me, I really specific it.
Khimm: All right, thanks so much for having me on, Trymaine.
Lee: That was Suzy Khimm of NBC News. Suzy is a national investigative reporter, based in Washington, D.C. You heard earlier from Benjy Sarlin, policy editor for NBC. Benjy's father, Bob Sarlin, is continuing his recovery at the Mary Manning Walsh Nursing Home in Manhattan. The family says he's doing well.
Into America is produced by Isabel Angel, Allison Bailey, Aaron Dalton, Max Jacobs, Barbara Raab, Claire Tighe, Aisha Turner and Preeti Varathan. Original music by Hannis Brown. Our executive producer is Ellen Frankman. Steve Lickteig is executive producer of audio. I'm Trymaine Lee. We'll catch you next Monday and Thursday.