The Daily - Death, Profit and Disclosure at a Children’s Hospital

Episode Date: May 31, 2019

A Times investigation found that doctors at UNC Children’s Hospital suspected that children with complex heart conditions had been dying at higher-than-expected rates, and even children with low-risk conditions seemed to do poorly. Secret recordings shared with our colleague reveal what was happening inside the hospital. Guest: Ellen Gabler, an investigative reporter for The New York Times. For more information on today’s episode, visit nytimes.com/thedaily. Background reading:Limited information released by UNC shows that the hospital’s cardiac surgery mortality rate from July 2013 through June 2017 was higher than those of most of the 82 hospitals that publicly report similar information.Listen to the audio recordings that provide an unfiltered look behind closed doors at the hospital.

From The New York Times, I'm Michael Barbaro. This is The Daily. Today, a Times investigation into a hospital where doctors suspected that children with complex heart conditions had been dying at higher than expected rates and where even children with low-risk conditions seemed to do poorly. Secret recordings shared with my colleague Ellen Gabler reveal what was happening inside the hospital.

It's Friday, May 31st. Well, Skylar, when she was born, how did it go? First time I saw her, you know, I fell in love. She came out and she's just like, her hands up by her face like she was posing. She came out posing. Just like, you know, look I'm pretty. Whatever she was gonna do, she was gonna be pretty doing it. And so when did you realize that she might have a health problem? Okay, so she went, I think it was around her three-month appointment at her pediatrician's office.

And I noticed the one doctor, she said, well, her heart sounds off. Like, that rhythm is really off. And she said, it could be nothing, but I just want them to just take a look, you know, just look more in depth. So Ellen, how did you meet Skylar's parents, the Joneses? So I met Tasha and Thomas last year. I was looking into some problems I had heard at North Carolina Children's Hospital, and I knew that their daughter was one of the kids who had had heart surgery there. I went to the cardiologist's office, and they did EKGs. And when the cardiologist came out and showed us the pictures of her heart, I can remember holding her very, very close to me,

because I'm just like, no, I don't know. And I remember calling my husband when I went and got in the car. Yeah, I was at work and she called me. She was crying. And I was like, what's wrong? She was like, you know, they told her, you know, Skylar had a hole in the heart. And I was like, what? So how unusual is it for a parent to hear what Skylar's parents heard?

Heart defects are actually the most common birth defect. About 40,000 kids every year in the U.S. are born with one. 10,000 of those kids have to have surgery before they turn one. Skylar's case was a bit different. From what I could understand, she would eventually have to have like a patch of her heart and she should be able to function normally. What the doctors diagnosed her with was a condition that could wait until she was older. And the majority of kids with her condition have surgery and go on to live healthy lives.

Be able to participate in any sports or whatever she really wanted to do. So with surgery down the line, they continued with the checkups, monitoring her heart. And like fast forward in time. In the spring of 2016. I just started noticing like every time you would have her in your chest to chest, I could feel her heartbeat really fast. Like back to back. Her heart was racing.

She was sweating more than usual. And I'm like, are you okay? She's like, mommy, I'm tired. I'm tired. And at one of her doctor's appointments, the cardiologist said it was probably time to have surgery soon. You know, and I asked him about, you know, the risk. We talked about the risk, you know, and of course, with surgery, it's always a risk,

right? But the way it was presented, it was more like a simple procedure. It kind of sounded like it was pretty routine. The complications for this type of surgery was really low. They gave us some available dates that were open. And with me, I'm just like, okay, well, if she has to have the surgery, we want to get it fixed and get it out of the way. So we won't put her at a risk to have a heart attack or collapse or something else happening to her. And I'm thinking she should be in good hands because, I mean, just with the reputation, you know, they have good health care. So Tasha's right. UNC did have a good reputation

and they still do. But a while ago, I started hearing about some really serious concerns in the pediatric heart surgery department. And what I was hearing was these cardiologists were hesitant to send their own patients to their own hospital for surgery. That's an alarming and concerning thing. And so I wondered, what is going on there that's making them feel like this? But all of this was happening behind the scenes inside the hospital. And Tasha and Thomas wouldn't have known any of that when they were setting up Skylar's surgery.

It was just a random date we just picked. So they set a date a little before her third birthday. June 1st, and the day before, we were taking her in. I remember I had a hard time sleeping. It was just me, her, and Skylar. So we were just in the bed, you know, trying to rest. But she was balled up in the middle, so we were just sitting there rubbing on her. I can remember asking her, do you know where you're going tomorrow?

And she said, I'm going to the hospital. And I'm like, do you know what you're going to the hospital for? And she said, my heart. Well, after probably maybe one or two hours of sleep, I think we left the house about 6 o'clock that morning, got to UNC Hospital. Took us a while to check in because she was just really conversing with the check-in staff. Like, you're so pretty.

And she'd go, thank you. And she's like, see my dress. And she was waving to everybody in the hospital. Her little diva wave. When we met up with the doctor, we had changed her into the gown. And I can remember her mood just kind of changing.

She was sitting on Thomas when the heart surgeon was talking to her. I think they put her in the little hospital bed and I think they were taking her vitals. But she got really quiet. She wasn't her bubbly self anymore. And then it's like, okay, you ready to go? When she was walking down the hall, you could hear her yelling for her dad. She just wanted her daddy.

She said, I want my daddy, daddy. And I was just, I was thinking, should I just run out of the house with her? Should I just take her and just say we just had to come back another time? I was almost at that point. Yeah, I get kind of emotional with that part, but, um... I'm sorry. Because that was really the last time we heard her voice. Her normal voice. The biggest thing I remember is we was in the waiting room and...

I felt really nervous, just really anxious because... Of course we was waiting for the doctors to come out. No one came out and gave us any type of update. And it actually took longer than it originally said. I mean, it lasted all day. I remember going to the pre-op desk and kind of asking them, like, you know, somebody going to come and tell us something? And said someone would come out and talk to us soon.

And what happened when the surgeon came out to update you? Yeah, he said everything went fine and she'd be coming out anytime now. So Ellen, what happened? Well, it's hard to know for sure because we weren't in the room, but I do have Skylar's medical records. Her parents shared them with me, and I had some heart surgeons look them over to help me understand what was going on. And the first thing is Skylar had been misdiagnosed. Tasha and Thomas were initially told that Skylar had a hole in her heart. In fact, her condition was a bit more complicated. A vessel going into the right side of her heart wasn't fully enclosed,

letting blood leak into the wrong chamber. And so that had to be fixed during the surgery. But it's still considered pretty low risk. The mortality rate is about 2%. So most kids who go through this surgery come out okay. Yeah, they generally do. But after surgery, Skylar was wheeled into intensive care. And a few hours later, she was awake. And I felt like she was in pain. She started to have some serious problems. And then I kind of started regretting, like, did we do the right thing?

Over the next couple hours, that's when things get really bad. The machines that Skylar is hooked up to start going crazy. Next thing you know, people just run in her room, and I'm kind of looking around like, what the heck is happening? Skylar goes into cardiac arrest. Doctors and nurses swarm her bed and start doing CPR. Thomas had pulled Tasha out of the room so she didn't have to watch what was happening to their daughter.

Skylar gets CPR for almost an hour, and that night she was put on life support. So while Skylar's in the ICU, one floor down, there's another crisis brewing. A group of doctors are in a meeting. They're sitting around this conference table. It's almost the entire pediatric cardiology team at UNC. The goals are to, and maybe of this meeting,

is to figure out where to go from here. And they're really worried. They're worried about the patients that they see coming out of surgery. Figure out where to go from here. And they're really worried. They're worried about the patients that they see coming out of surgery. Somebody at the hospital is so worried that they secretly record the meeting and later pass that recording on to me. What would make someone so worried that they would want to secretly record this meeting? Well, when you listen to these recordings, you can hear in the doctor's voices, they're really struggling with what to do with their patients, these patients who need surgery.

Now, just to be clear, these are cardiologists. They diagnose and treat heart problems, but they don't do the surgeries. They refer their cases to surgeons, either at UNC or sometimes a different hospital. And some of the kids coming out of surgery at UNC, they're not doing well. You've got Skylar upstairs on life support. Right before Skylar, a newborn girl died after having surgery. Two other kids with low-risk surgeries had complications. A baby boy died after a valve in his heart appeared to have been damaged during surgery. These are the kinds of problems

that the cardiologists at UNC are seeing. I asked myself, would I have my children have surgery here? In the past, I'd always felt like the answer was yes for something simple. But now when I look myself in the mirror and what's gone on the past month, I can't say that. And if I can't say it for my kids, and that should be our group discussion. If we can't all look ourselves in the mirror and think we're doing the right thing, we need to change what we're doing. They're especially upset about another little girl who needed a heart transplant. And when an organ became available, apparently the chief surgeon at the time,

he's the surgeon who operated on Skylar, didn't come in to do the transplant. As a mother of three children, oh my God, this is inexcusable. As a physician, I mean, we all took the oath. What you're supposed to do is write for our patients. This is what you signed up for. And who is he to play God with some kid's

life? I can't get past this. This is beyond horrifying. So wait, a transplant suddenly becomes available, and the doctor just doesn't come in and do it. Well, the doctors ask their boss, the chief of their division, if there's some sort of explanation for this. Well, is there a story that we just have not been creepy to yet?

No, I don't think so. This is really pretty awful. It is pretty awful. He didn't really have an answer for them. No. No, I don't think so. It is pretty awful. He didn't really have an answer for them. And I also asked the hospital about this, and they said that they can't share personnel information, but generally no surgeon can be on call 365 days a year. Of course, I also asked the surgeon himself, but he declined to comment. But the doctors in this meeting are upset because if they have patients who need transplants, they need to be assured that there's going to be a surgeon around to do them. And not only are the doctors in this meeting worried about the chief surgeon who did most of the operations at this time.

Nobody has their head in the sand. Like, they're not aware that the lack of cardiac intensivists and the lack of nurses and the lack of... They're also worried about the whole system of care. The house is in total disarray. This is crazy what we're doing. I should be as pissed as anybody, in fact, maybe more. I've never seen anything like it, quite frankly. You mean everything related to kids having heart surgery at UNC. Yeah, it's really hard to pinpoint one specific thing that's going wrong

because heart surgery is really complicated, right? Think about all the people involved. You've got the surgeons, the anesthesiologists, people running the heart and lung machine during the surgery. You've got the nurses, the doctors in intensive care, the cardiologists. right in order for things to go well for these kids. And the research actually shows that kids, especially with complex conditions, usually do better in hospitals that do a lot of these surgeries. So if you're a hospital like UNC that's competing with a neighboring hospital, which they are, and actually a lot of hospitals in the country are, then it can be really hard to get enough patients so you have the volume that you need to get the best possible outcomes.

So it's hard to say exactly why a patient wouldn't do well. What I can tell you is that some of the doctors in this meeting worried that the hospital was under-resourced in terms of staffing and training, and that the hospital was taking on patients it wasn't equipped to handle. But these doctors, they didn't have the evidence to back up their hunch. And that's where this recording gets really interesting. I think one thing we can demand from Michael, demand in the short term, transparency in terms of the outcome, in terms of if we honestly tell the patients what the actual outcomes are. Yes, I have that super-valuable P.O. So one of the ways that hospitals figure out how they are doing at these surgeries

is they collect all kinds of data about every single surgery, like the weight of the baby, if the baby was premature, if there were any genetic abnormalities, things like that. And they send all this data to an outside organization, if the baby was premature, if there were any genetic abnormalities, things like that. And they send all this data to an outside organization. And that organization makes sure all the data is accurate. And they analyze it. And they give a report back to the hospital.

And in that report is something called risk-adjusted data. And what is that, risk-adjusted data? So it's basically trying to account for the individual risks of a particular patient. And so that way, you know, a hospital handling the more complex patients, it's understood that they are going to have a higher mortality rate. It kind of takes the riskiness of what's going on here into account and make sure that that's part of the data. That's right. So the other important thing to know is that it can help show if low-risk patients are dying more than they should. Almost every hospital in the country that does pediatric heart surgeries sends this data in to that organization. But only 75% of hospitals make this data public. The other 25% of hospitals in the

country don't share this data. UNC falls into that category. What's especially strange at UNC at the time of this meeting is even these cardiologists can't get the mortality data for their own hospital. That's really strange sounding. How is that possible? Well, I finally figured out that the hospital hadn't been submitting data to that outside organization because the person whose job it was to do that, they left. it was to do that, they left. And the position hadn't been filled for quite a while. And the cardiologists are aware of this, but they still feel like there should be some basic mortality data that someone is collecting, likely the chief surgeon. That's often something that surgeons do. often something that surgeons do. So they've been asking for some data, but they say they're not getting what they need. So the hospital is not sending in this data. It's not getting a report

back, which means the doctors can't share this UNC mortality data with parents because they don't have it. So I don't know what they're sharing with parents, but what I do know is that eventually UNC was able to submit that backlog data. And about seven months after this meeting, the doctors were able to look at some of it. And what did that data show? So I tried for over a year to get this information, and UNC denied my request to the point that the New York Times decided to sue them. And just recently, I finally did get UNC to release some information.

And what does it show? So for a four-year period through June of 2017, UNC had a higher death rate for pediatric heart surgeries than nearly all of the other hospitals around the country that publicly report this information. Other hospitals have mortality rates as low as 1 or 2 percent. And so for UNC, from the data that they gave me, their mortality rate was 4.7 percent. Now, that's just the raw number. That's the number of kids who died out of the total number of surgeries. The information that they won't give me, which 75% of hospitals already make public, is that risk-adjusted data.

Why won't they give you that information? Well, because they say it's not risk-adjusted enough. I'm trying to understand what that means. Data that is adjusted for the risk factors of the population that they take care of, their argument is that it doesn't do enough adjusting for that risk. of a lot of low-income patients. The problem, though, is that hospitals throughout the country, including ones that publicly report this information, they also take care of really sick patients. They also take care of low-income kids.

I have to say, the fact that they're arguing this point does make you wonder if they are worried that this risk-adjusted number that they don't want you to see might be very unflattering. So that might be the case, but that's why I want to see this data. And the other thing they say is that it's not fair to compare them to other hospitals because the data isn't really statistically significant, meaning there's no real difference between them and another hospital but i mean if you're a parent and you have a sick kid or if you're a cardiologist and you have to refer that

kid for surgery this is information you should be able to get and it's a nightmare right now i mean it really is and we are in crisis and everyone is aware that. So that guy saying it's a nightmare, that's Dr. Tim Hoffman. He's the chief of pediatric cardiology, and he's the most senior person in that meeting. So the concern among the doctors has reached pretty senior levels in the cardiology department. That's right. We are going to be slightly different in the next two years. I don't know if that means we're going to be without a surgical program, with one or not, but I mean, this is it. This is the fork in the road. So as the meeting ends...

I will meet with Kevin and we'll go from there. Dr. Hoffman says he's going to take these issues to someone named Kevin Kelly. That's the head of the Children's Hospital at the time. So these doctors are facing an ethical dilemma here. Something seems to be going wrong within their own hospital, and it's putting young patients at risk. And they're wrestling with how exactly to proceed and to call it out. Yeah, and that dilemma only intensifies. We'll be right back. We'll be right back.

So three weeks after the doctors first meet, they gather again, this time with Kevin Kelly, the head of the Children's Hospital. I encourage you to be open with me if you feel comfortable. If you're not comfortable, that's fine too. This meeting is also secretly recorded, and the tape's a little hard to hear. I just can't send in more patients. But it's clear that the doctors who are there are still really upset. And I'm looking to leadership to come up with a new plan. They don't have access to the mortality data. They're conflicted about where they should be referring patients. And they want leadership to do something about it.

And what is his message to these doctors? So he tells the doctors that they should follow their conscience when it comes to where they refer patients. But... Reduces the volume of things. I'll just reduce the number of people. That's all I can do. All I get to do is manage money. Then he says if they start referring too many patients elsewhere, he might have to cut the staff at UNC. Because referring patients elsewhere

will cost the hospital money. That's right. If there's not enough money coming in, they don't have enough money to support the department. So essentially, some doctors feel that he's threatening their jobs. And he ends the meeting by telling the doctors to keep quiet about it all.

I suggest you make moral, personal judgments about how you handle cases. And when you walk out of here, stop talking about it outside of this room. Okay, so from June 1st, from the surgery to cardiac arrest to intubation... And while all this is going on, how is Skylar doing? Skylar has improved enough to come off life support, but she has a damaged vocal cord, which can be a complication from surgery or going on life support,

and she ends up aspirating, so getting some things into her lungs that she shouldn't. She ends up getting pneumonia. She aspirates again. And it was like a, I call it a rollercoaster ride because it was just ups, downs, ups, downs, and it was more downs than ups. I remember her birthday.

We were just so upset. She wasn't even up at that time. They had her down. The nurses went in there and they sang Happy Birthday to her at 212 that morning. They had decorated the room, kind of dressed up a little bit. They had her pink little headband around her head in true Skylar fashion. By the end of July, that morning of July 30th, she was just so happy. Skylar is doing a lot better. She's alert. She's gotten

out of bed a few times. She likes to have her hair braided and nails painted by the nurses. And her parents think she's doing pretty well. We pretty much locked in a home health nursing agency. So it was going to be set up for like when we were going home. But on one of her last days in the hospital. We were watching, I think it was Veggie Tales. That was her favorite videos. She starts to have really serious problems. And I was just sitting there right beside her in the bed.

And I was actually going to go down the street to one of the salons and get my hair, like, washed and everything. And I had turned around, and she was looking at me, and blood started coming out of her mouth, and her eyes started rolling in the back of her head. And then her stats just kind of dipped. And I'm kind of like, oh, my God. I ran out and got one of the nurses. They saw the little blood spill coming out of her mouth. And I kind of got pushed, you know, out of the way. And right before they wheeled her off,

I remember just kissing her and kind of loving on her and stuff before they took her back. And I was just telling her that we loved her. I just remember we just kept locking our eyes. And I remember them rolling her off and she was still looking. And she pretty much, I mean from the, oh, that was our last time seeing her when they rolled her off. Ellen, does your reporting show that the hospital is responsible for Skylar's death? So it's hard to know. There's always risk when you do surgery, and there are all kinds of reasons that a kid might not make it

or might have complications. But Skylar was an otherwise pretty healthy kid undergoing a relatively low-risk surgery, and she ended up having all these complications and ultimately died. That's the reason why this data is so important, died. That's the reason why this data is so important. So we can find out if situations like Skylar are happening on a broader scale. And, you know, of course, I asked UNC about Skylar's case, and they said that because they are a health institution, they're prohibited by law, like other health institutions, from talking about private patient information. But I also asked them if

Skylar's parents signed a release, if they could talk with me about her situation, but they declined to do so. So what has UNC said about your reporting here? They said that they did their own investigation at the time and found that the criticisms of the program were unsubstantiated and that there were never any problems affecting patient care. They did say that there was a dysfunctional group at the time and team culture issues. They say that they've always been making improvements to their program and they're continuing to do that. They hired a new chief surgeon last summer. They said it was because the one who was there was nearing retirement. They said they've made other leadership changes, too, and they have a very strong program today, and they're proud of it.

But in the end, they are still unwilling to release this really important data. That's the risk-adjusted data that over 75% of hospitals around the country make public. That would help confirm what they're saying. And the Times is still suing to get this. Hey guys, can you hear me? Hello. Yes. Good. All right, so we're all here.

And what have Skylar's parents said about all this? Well, I called them on the phone and told them what I found in my reporting and how the hospital responded to it. And they were understandably upset. Ah. I'm just at a loss for words right now, really. That's very upsetting, because we're trusting our daughter in the hands of the experts in this area, they're unsure of what they're doing. They have concerns about how the surgery's going to perform

or the issues that they were having. You know, it should have been an immediate stop. This really angers me. We could have made a decision to move forward or to hold off or not to do it at all. But because it was presented as

oh, it'll be over in, you know, a few hours and she should be okay and you know, it angers me that it could have been Lord. You know, she's gone and, you know, it's a situation where, you know, something has to be done. Can't continue to do this to people and families.

At the end of the day, that's what it's about. Be better informed to make decisions about their loved ones. Here's what else you need to know today. You're not accepted. You said you could not say that was so kind. You could not hear you. That means you're innocent. That means you're innocent. Excuse me. That he should have said, you're guilty. On Thursday, President Trump claimed that remarks by former special counsel Robert Mueller showed he was innocent, despite Mueller's explicit statement that he could not clear the president of criminal conduct. I think Mueller is a true never-Trumper. He's somebody that dislikes Donald Trump.

The president described Mueller, without evidence, as biased against him and declared that despite its interference in the 2016 election, that Russia played no role in his victory. No, Russia did not help me get elected. You know who got me elected? You know who got me elected? I got me elected. Russia didn't help me at all. Russia, if anything, I think... Our theme music is by Special thanks to Our theme music is by Jim Brunberg and Ben Landsberg of Wonderly. Special thanks to Sam Dolmick, Michaela Bouchard, Stella Tan, Julia Simon, Samantha Hennig, and Ike Sreeskanarajan. That's it for The Daily. I'm Michael Barbaro. See you on Monday.