Up First from NPR - The Sunday Story: When Hospitals Don't Say Sorry

Episode Date: January 21, 2024

Medical errors happen all the time. They can be overlooked or they can lead to big lawsuits and settlements. But what they rarely lead to is an apology. Doctors and hospitals have long responded to medical mistakes with silence. There are many reasons for this approach: fear of legal liability, loss of status, even shame. But increasingly, patients, families, and yes, doctors, are calling for a new approach, one that acknowledges the lasting damage that comes from a failure to address medical mistakes. This week on The Sunday Story, we talk to Tradeoffs health reporters about a family with a nightmarish story of a what they say was a medical error, and a look at what's being done to keep others from suffering in the same way.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Hey everybody, I wanted to ask you a quick favor. Here at the Sunday Story, we've been thinking a lot about electric vehicles. Switching away from gasoline is a crucial part of the fight against climate change, and it means a huge set of changes for the auto industry and for all the people who drive every day. We want to know, what questions do you have about electric vehicles? They could be practical questions about owning and charging EVs, or it could be big picture questions about what they mean for the planet. We just really want to know whatever's on your mind when you

think of electric vehicles. You can share your question by sending us a voice memo at thesundaystoryatnpr.org. Again, that's the Sunday Story, all one word, at npr.org. Please include your name, age, and where you're from in your submission. Send it in by January 31st, and we might try to answer it in an upcoming episode. Okay, now on with today's show. I'm Aisha Roscoe, and this is The Sunday Story. Some mistakes we make can feel impossible to forget. Stephen Kurachek hasn't let go of a mistake he made more than 40 years ago. I mean, we're talking about an event in 1979, and I'm still ashamed. At the time, he was a medical resident, and he gave a patient the wrong dose of penicillin. And as a consequence,

that elderly man had a seizure, and the seizure interfered with his breathing, and so he ended up on a ventilator. When doctors met up for rounds that morning to talk about the patients and their care... Basically, I hid it. He didn't explain why the patient was now on a ventilator. Stephen remembers that his senior doctor pulled him aside. And said, Stephen, I know you know what happened. I said, yes, and I'm terribly sorry, and I feel badly. He said, well, I don't want you to worry too much about it because it's the first of many errors,

and you have to move past it. At the time, I thought that was quite generous of him because it freed me of exposure. But over time, Stephen saw that keeping his era a secret wasn't doing anyone any favors. It didn't do anything for the system. It did nothing for my colleagues on rounds who didn't learn about the failure.

And most importantly, this was hidden from the family. He didn't admit to the patient's spouse what had happened. That was the feeling at the time. If an error occurred, it was best not to expose it. And that never really set well with me. I heard about Stephen's story through Dan Gorenstein, who's the host of the podcast Tradeoffs. It's a show about health care. Recently, Dan and Tradeoffs reporter Alex Ogan reported out an episode on medical errors and the way they've been handled by healthcare systems. Dan's here with me.

Aisha, so glad to be here. Thank you. Dan, Stephen Kurachek's story, it is powerful, but it happened decades ago. Why did you choose to use this one in your reporting on medical errors? So Stephen's story can help us understand how far some hospitals have come and honestly, how much remains the same. I mean, look, medical errors are still pervasive. In 2018, one in four Medicare patients had errors during hospital stays, according to a federal report. To this day, Aisha, some doctors continue to hide when they've harmed a patient.

Part of the reason we see that medical errors still get covered up is because the stakes are huge. Like, hospitals could face major lawsuits. Doctors can feel ashamed. But, you know, when we began reporting on this issue, we wanted to understand the patient's perspective. What's it like to go to the hospital hopeful and end up on the receiving end of an alleged medical error? And we found a family with this truly nightmarish story. Okay, so tell me about this family. Who are they? Their names are Jeff Goldenberg and Naomi Kirtner. Their daughter, Talia, had been diagnosed with a rare disease called Ehlers-Danlos when she was 20. The disease means her tissues become overly flexible. Her muscles can't really do their job. In her early 20s, she was often wearing a neck collar to stabilize her neck. She was getting worse, having these terrible headaches and constantly in pain. Doctors recommended Talia get surgery to fuse together the upper part of her spine to hold it in place, and that would stabilize her neck and, in theory, should end her blinding headaches. She finally had surgery in February 2014. Her parents, Jeff and Naomi, were there in

the waiting room waiting for hours. We'd been sitting all day long waiting. There is nothing like waiting for a loved one to come out of surgery. So how did the surgery go? Naomi says the surgeon met Talia's parents in the waiting room and told them that the procedure had gone well. The surgeon even predicted Talia would be up soon and walking the hospital halls. And we were so happy. We took a selfie. We never take selfies. It was the first selfie we took, and we were going to show that to her when she was awake.

But when Naomi and Jeff got to Talia's hospital room... I mean, it was clear that she was having trouble breathing. She was struggling to open her mouth all the way. She started vomiting. So Jeff and Naomi urged the staff to check out Talia's breathing. The hospital did ultimately send someone in. He took his stethoscope and he's listening to her breathe while we can hear her breathing. And he just said, she's fine. There's not a problem here. Now, Jeff was a family doctor for 25 years, Aisha, and he could clearly see his

daughter was in distress, but he had this longstanding policy, right? He kept his credentials to himself, let the professionals do their job kind of thing without someone feeling like they're looking over their shoulder. But on this day, he broke that rule. I was doing this sort of thing in my mind, like, you know, I don't want to throw my weight around, but my God, Tali's going to die. I mean, you're not going to stay silent if your child can't breathe, like if that's the what, you know, the way that they're describing it. I mean, that's exactly right. And they totally spoke up. I mean, and as a result of that, the staff at the hospital agreed to transfer Talia to the ICU. She seemed to be stabilizing there. And for the first time since she'd gotten out of surgery, Naomi and Jeff felt like they could take

a breath. The couple agreed to step away from the bedside for a few hours to sleep and be back with Talia in time for her surgeon's check-in. Jeff got to Talia's room at 7 a.m. the next morning. The first words that Talia said when I got to her bedside were, I wish you'd been here, Papa. They wouldn't listen to me. Talia told Jeff that the medical team hadn't addressed her breathing concerns. In fact, told her that they were going to arrange to transfer her out of the ICU because she was doing so well. Jeff told me at that point Talia was still struggling to breathe

and had trouble even swallowing droplets of water. So did they get someone to help with her breathing, you know, like they did the first time when they spoke up to get her, but largely they felt ignored. Someone did come in and ultimately gave Talia Valium a medication for anxiety. And one of the things Jeff said is, Talia is not having trouble breathing because she's anxious, but she is getting increasingly anxious because she can't breathe. According to her folks, Talia continued to deteriorate over the morning and into the afternoon. At 1.26 on February 11, 2014, Talia gasped for air. If you could imagine the last minute of somebody with a pillow being held down over their face as they're strangled, that's what happened. Jeff says he screamed for the doctors, but by the time the staff did the emergency procedure to get air into Talia's lungs, 18 minutes had passed. Her brain had gone without oxygen too long.

She was in a coma. Nine days later, Naomi and Jeff took Talia off life support. To make things worse, Naomi and Jeff say the hospital, Aisha, offered no explanation for Talia's death. No apology. Really unthinkable, unimaginable. When we come back, we'll talk about why the family didn't get an apology and what might prevent situations like this from happening again. Stay with us. Now Our Change will honor 100 years of the Royal Canadian Air Force

and their dedicated service to communities at home and abroad. From the skies to Our Change, this $2 commemorative circulation coin We're back speaking to Dan Gorenstein, host of the healthcare podcast, Tradeoffs. Dan, we just heard a heartbreaking story about a young woman named Talia who died as she was recovering from a surgery in the hospital. According to her parents, the hospital failed to respond appropriately to their pleas to address Talia's struggle to breathe. They say the hospital never admitted doing anything wrong. And I'm guessing that the hospital stayed silent to protect itself from lawsuits. We reached out to the hospital and we asked them, but they decided not to comment. Now, in general, hospitals have avoided apologizing in situations like this for a long time. And as you're indicating, I mean, there's some real obvious incentives here for hospitals to not admit any kind of error. Copying to mistakes opens the

door to lawsuits based on the experts that we talk to. The standard operating procedure at a lot of hospitals around the country is the first call you make is to the attorney, not the family. Of course, that doesn't guarantee against lawsuits. Talia's folks did still sue, alleging that the hospital failed to respond appropriately after surgery, and the hospital did ultimately settle with the parents. Jeff and Naomi said litigation was probably the closest they ever came to any meaningful resolution. There's no real way to get Talia back and there's no real way for them to atone for their sins. And so society has provided the avenue of lawsuits and the courts as a way of trying to make things right. And you can't really make

things right, but that's the avenue that we have. But what does that do to the patients and to the families to not even get an apology? I mean, honestly, it just takes a real toll. When there's medical error and you're a parent, it gets very messy. And then you're up against people who aren't taking their share of responsibility in this. And so all you're left with is your guilt because you do feel responsible. I lived in fear of having somebody say to me, well, Dr. Goldenberg, if you were so sure that your daughter was at risk, why didn't you do more for her? I mean, if it was my daughter, I'd have moved heaven and earth. You know, how come if you were so certain, you know, if you really felt like the hospital should know, then that means you really knew. And if you really knew, why didn't you do more?

You know, those are thoughts that I still have. Jeff felt so guilty, so torn up. He decided he had to stop treating patients. He quit being a doctor. It's really just so heartbreaking, you know, to give up your whole career of taking care of people after going through something as horrific as this. This idea of not openly owning up to what happened, it really has this insidious way of seeping into people's lives. Like the doctor we heard at the beginning, Stephen, has felt so guilty for his mistake. It sounds like partly because he never told the family what he did. And then you have a family like Jeff and Naomi, and they're blaming themselves

because the hospital didn't take any of that blame. Yeah, you know, this is a consequence of what can happen when you hide medical errors. It's corrosive to everybody. Someone who really understands this is Julia Marath. She was the chief operating officer of Minnesota's Children's Hospital in the early 2000s. And she really wanted to kind of flip that culture that you're talking about there, Aisha. When things go wrong, I was often behind the curtains and veiled in secrecy. And it's hard. And it doesn't seem like it would be, but it's people's sense of guilt, failure, reputation, esteem with colleagues all create barriers. And so we needed a new vocabulary and a new way to talk about this.

So when Julie proposed a new vocabulary some 20 years ago, medical errors in healthcare were a big issue. In 1999, a seminal report came out trying for the first time to quantify how big a problem they really were. Researchers estimated anywhere from 44,000 to 98,000 people died from medical errors a year. Since then, Congress has poured $50 million into research to reduce errors. 39 states and D.C. have passed laws encouraging doctors to apologize to patients. So the tide has shifted some. Now, disclosing is a big step, but Julie and other thought leaders understood an apology goes only so far. to really make care safer for everyone, hospitals needed to fix the underlying issue. And she told the staff, the source of the problem in most cases was poor communication and a bad process,

not bad doctors and bad nurses. So how did Julie's program address that? Well, at Minnesota Children's, staff and parents began reporting these errors, and Julie says this helped the hospital address some of those systemic underlying issues. We kept up a steady drumbeat that safety was part of everything we did, there was a different level of transparency. So Stephen, remember the doctor who felt terrible about hiding the error he made with the penicillin dose all those years ago? Well, 30 years later, he was actually working at Minnesota Children's and he made another mistake, a medication mistake, which is a common kind of medical error. But this time he was working under Julie and with this new system in place, he handled

it totally differently. Stephen had told a nurse to give their patient, a young boy, an anesthetic. He did not say how much, so the nurse accidentally gave him too much. But Aisha, instead of hiding what had happened this time, Stephen told the patient's family right away. The father was quite angry. I recall him shaking his head and something to the effect of how could this happen. The mother was quiet, but asked, what are the effects of this? So we went through that. He explained what happened and took them to see him. The nurse who'd given the kid the medication was in the room,

almost like bracing for what the parents might say. The mother just walked right over to that nurse and hugged her. And when the nurse says, I can't do this, I can't take care of your son, I can't be in this room, the mother insisted that she care for her son because she trusted her. The boy ended up all right, and the family stayed loyal to the hospital, coming back year after year. By the way, Julie said Stephen is one of the best docs she's ever worked with, in part because he's so open about mistakes that he makes. But here's the big thing. This process starts with an apology, but then there's another step. Doctors revamp the medication order process to hopefully prevent an error like this from ever happening again. And this, at least to Julie, is what counts

as accountability. Has this approach spread to other hospitals? It has. And it's really a blueprint for what today are called communication and resolution programs, or CRPs for short. And here's what's all involved in that process. First, every potential error triggers a review and conversations with patients. If the hospital finds it's their fault, they offer patients compensation. That could be in the form of money or services like paying for follow-up care or counseling to deal with the grief. Here's what some, though, see as the downside for patients. So that doctors and hospitals feel comfortable being totally upfront,

much of this information cannot be included in a lawsuit. So to get the transparency, the trade-off is that the families can't use this in a lawsuit against the hospitals. That does sound like at least some improvement over complete secrecy. But if CRPs have been around since the early 2000s, why didn't Talia's family get to go through that kind of process with their hospital? Well, only a small fraction of hospitals have adopted these programs. About 400, which is only about 6% of all hospitals. And the one Talia was at wasn't one of them. So why haven't more hospitals done this? Money. I mean, at the end of the day, hospitals are worried it might increase costs. Here's what a leading researcher, Tom Gallagher, told me. Tom's at the University of Washington.

For many, many years, people were very concerned that if we were more open with patients about harm events, there would be an avalanche of litigation. That is clearly not the case. What Tom's saying there is that for hospitals that have adopted CRPs, there's been no huge spike in litigation. So are more hospitals going to start adopting these programs then? It seems possible. I mean, some more cutting edge insurance companies are encouraging hospitals to adopt these systems because they say it's in hospitals' financial interest and it's the right thing to do. Basically, it's just good business. This past fall, a group of patient safety experts convened by the Biden administration recommended that all hospitals must create a program or lose out on some Medicare funding.

Some hospitals have said, Aisha, that they see that proposal as a clear message that this really is the future. There's another new development. Researchers are starting to ask patients what they need. And some of it is being funded by the people who have been hurt. One of those families is Jeff Goldenberg and Naomi Kirtner, Talia's parents. It's become clear over the last 20 years, apologizing, taking ownership is part of the solution. So the newer question is, what incentives do hospitals need to reduce errors at that systemic level? And how can hospitals not add to the pain patients and

families already suffer after an error? That's what Talia's parents are trying to figure out with the research that they're funding. Jeff told me another part of the solution in his mind is that doctors and nurses need to show up for their patients in good times and in bad. To abandon patients after you harm them is like you're leaving them alone at their point of greatest need. And caring for them means caring for them all the way, not just when you're having obvious successes, but even when you screw something up, they don't stop being your patients and they don't stop deserving that kind of care just because you've hurt them.

As far as Jeff and Naomi are concerned, Aisha, the point when hospitals and doctors internalize that message, that's going to be success. Thank you for bringing us this really, really important story, Dan. I really appreciate it. Aisha, I appreciate you. Thank you so much. This episode of The Sunday Story was co-reported by Alex Ogun and Dan Gorenstein. It was produced by Alex Ogun, Raina Cohen, and Ariana Lee.

It was edited by Jenny Schmidt. The engineer for this episode was Maggie Luthar. Our team includes Liana Simstrom, Andrew Mambo, and Justine Yan. And Irene Noguchi is our executive producer. We always love hearing from you, so feel free to reach out to us at thesundaystoryatnpr.org. I'm Aisha Roscoe. Up First is back in your feed tomorrow

with all the news you need to start your week. Until then, enjoy the rest of your weekend. Thank you.