Dan Gorenstein: A botched cancer diagnosis, a medication overdose, the wrong limb operated on, medical errors can be stomach churning, devastating, life altering.

And they happen more than most people realize. In fact, 1 out of every 4 hospitalized Medicare patients are victims of an error.

Over the past two decades a growing number of hospitals have adopted practices that disclose medical mistakes and offer support to the people who must cope with the often tragic consequences.

Today, how much these programs actually help patients and the push to see them spread nationwide.

From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein. This is Tradeoffs.

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DG: Jeff Goldenberg walked into his daughter’s hospital room.

Jeff Goldenberg: Talia sounded like Darth Vader I mean it was clear that she was having trouble breathing.

DG: She struggled to open her mouth all the way, making breathing that much harder. Within minutes she vomited.

Jeff could tell Talia was in a lot of pain that afternoon.

And he was really worried about his 23-year-old daughter.

Just a few hours earlier that February day in 2014, Talia’s surgeon had told Jeff and his wife Naomi Kirtner that the procedure had gone well.

He explained that he’d successfully fused the upper part of her spine to stabilize her neck.

Just what the two anxious parents wanted to hear

Naomi whipped out her phone to mark the moment.

Naomi Kirtner: We were over the moon. We had a selfie to show us smiling because we were so happy about how the surgery had gone and we were going to show that to her when, when she was awake.

DG: The family had anticipated this day may come for months.

Talia had been diagnosed with Ehlers-Danlos at age 20, a rare disease where her tissues become overly flexible.

Over the previous three years, Talia’s condition had only gotten deteriorated discomfort morphing into bouts of agony.

Talia captured her pain through her art.  Naomi says one drawing depicted a tortured face, hand resting on the forehead epitomizes how Talia felt in the months leading up to her surgery.

Shrapnel and Panic by Talia Goldenberg with water color and ink

NK: The eyes to me are so. Sad and tender and quietly reflective. There’s a pleading quality about it.

DG: Talia and her parents were pretty optimistic the procedure would stabilize Talia’s neck and all but end her frequent blinding headaches.

Back in the waiting room, the surgeon had predicted Talia would be up soon, walking the hospital halls.

Instead, here she was struggling to even breathe.

Naomi and Jeff urged the staff to check out her breathing. The hospital sent in a respiratory therapist.

NK: 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.

DG: Naomi and Jeff were dumbfounded.

The breathing, the vomiting, the severe pain. As a physician of 25 years, it was obvious to Jeff their daughter was in distress.

JG: I wasn’t in Talia’s room for five minutes before I was doing this sort of thing in my mind. Like, yeah, I know I don’t speak up and you know, I don’t want to throw my weight around, but ‘My God, Talia is going to die.’

DG: Jeff and Naomi did speak up, advocated for their daughter and it did help some.

The hospital agreed to transfer Talia to the ICU. She seemed to be stabilizing.

And for the first time since she had gotten out of surgery, a nerve-wracking eight hours, Naomi and Jeff felt 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.

DG: Jeff returned to his daughter’s room at 7am but Talia said the doctor had already come.

JG: 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.’ She went onto explain that the neurosurgeon and didn’t address her breathing concerns, and in fact, told her that they were going to arrange to transfer her out of the ICU because she was doing so well.

DG: Over much of those 24 hours, Jeff and Naomi felt dismissed and ignored.

NK: It was disturbing. It was terrifying. It was. Yeah, it was really frightening. Like something was really wrong.

DG: Talia was struggling to swallow droplets of water. The only clinician to examine her breathing that day was a speech therapist.

Desperate for help, Talia asked a patient Facebook group for advice. They were all terrified Talia’s throat would close, that she would suffocate.

NK: Every bit of her concentration. Felt like it was going to her breathing. She was just trying to breathe.

DG: Talia continued to deteriorate over the course of the morning and into the afternoon at 1:26 on February 11, 2014, Talia gasped for air.

JG: If you can imagine somebody with a pillow being held down over their face as they’re strangled. That’s what happened.

DG: Jeff screamed for the doctors ‘please, cut a hole in her neck right now.’

By the time 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 this day, Jeff continues to replay the whole scene.

Should he have flashed his credentials sooner. Was there someone else they should have called. How could he have missed meeting with Talia’s surgeon.

JG: I have never figured out why Talia didn’t get the care she needed. And you know, I tell people sometimes trying to sort this out, it’s like somebody put me in a round room and telling me to piss in a corner. I mean, it doesn’t matter how many times I go over and over and over this, it does not make sense.

DG: To make it worse, the hospital offered no explanation. No apology.

Jeff and Naomi were in shock.

NK: When there’s medical error and you’re a parent, it gets very messy because you do feel responsible 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.

DG: With the hospital abdicating responsibility, Jeff and Naomi found themselves taking on all of the guilt.

The agony was so intense Jeff decided he had to stop treating patients.

JG: I’ve got a trained doctor’s brain. And I can’t allow myself to be a person who gives medical advice and medical attention because I can’t bear the consequence of being wrong.

DG: A year after Talia’s death, Jeff and Naomi sued the hospital. And they settled with the hospital. But that accountability they craved. That never came.

DG: After the break, what it looks like when hospitals and doctors do take accountability in the wake of a medical error and a new federal campaign to push more hospitals to address their mistakes in real time.

MIDROLL

DG: Before the break we heard the isolation, guilt and anger a family lives with after losing their daughter to a medical error.

Mistakes like this are killing tens thousands of Americans every year.

Over the past two decades a growing number of hospitals have built programs to catch mistakes and help harmed patients.

The Biden administration has made patient safety a priority.

This fall, a presidential commission released a report with recommendations on how to reduce medical errors.

Reporter Alex Olgin joins me to talk about that report and how health care leaders want more effective ways to address patient harm.

DG: Hi Alex

Alex Olgin: Hi Dan.

DG: So in September the people appointed to this White House commission called on President Biden to make patient safety a national priority.

First on their agenda: the need to do a better job of tracking medical errors.

That means, basically, the need for more data, right, Alex? What sort of data is collected right now?

AO: Well, Dan, reporting medical errors has been mostly local, spotty and voluntary.

Federal health officials keep information on infections and falls. 26 states require reporting, but only for the most serious errors. Like the wrong surgery or medication mix ups.

But really, Dan, no one knows how many errors happen. Let alone are deadly. Estimates range from 250,000 a year to 22,000.

DG: Ok so requiring hospitals to report errors potentially could get a handle on the scope of the problem. But Alex, the bigger question is how do you catch a problem early before it leads to death, like what happened with Talia.

AO: Yeah, that’s exactly the problem the White House commission is trying to address. And part of their solution is to look to the airline industry.

DG: Ok, go on.

AO: The airline industry has done a good job of creating a system and culture of reporting safety.

In health care, guilt, shame and fear of lawsuits have prevented doctors and hospitals from even admitting an error, even if the person is dead.

Patient safety experts have spent 25 years trying to figure out how to reduce that fear.

But before we get to the latest thinking on that, I want to take us through three eras of medical mistakes over 50 years.

DG: Ok tall order, but I’m excited for your ambition. 

AO: So the first one is what I’m calling the hide-it era. Back in the 1970s there was a lot of fear about making medical errors and admitting them.

Doctors were supposed to be infallible. If you copped to one it signaled you were reckless and really just a bad doctor. And it opened you up to get sued.

DG: Sounds like that fear really drove this silence.

AO: That’s right Dan, let me tell you a quick story about how this fear manifested.

When Dr. Stephen Kuracheck was a resident, he gave a patient the wrong dose of penicillin.

The elderly cancer patient ended up on a ventilator.

Stephen Kuracheck: And um basically I hid it. Which was commonplace. 

AO: Stephen remembers his senior doctor pulling him aside.

SK: And said, Stephen, I know you know what happened. I said yes, and I’m terribly sorry, and I, I feel badly. And 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.

AO: Stephen kept this mistake from the family. And that his mistake meant the patient likely died faster. His guilt has stayed with him for nearly 45 years.

SK: I mean, we’re talking about an event in 1979, and I’m still ashamed. But I recall so well not telling that spouse what had happened. I just didn’t have the courage.

AO: Doctors and nurses only actually began saying ‘I made a mistake’ and ‘I’m sorry’ in the late 1990s.

DG: Alex, that’s a pretty big shift in just 20 years. Some doctors and nurses going from hiding errors to apologizing for them. What drove that shift?

AO: So, the Institute of Medicine published a seminal paper in 1999. That shined light on the problem.

And the report estimated that as many as 98,000 people died from medical errors a year.

DG: So, this report was really the first effort at getting a sense of how big this problem was.

AO: Yea exactly. And it got the attention of President Clinton.

Bill Clinton press conference: Let me be clear about one thing ensuring patient safety isn’t about fixing blame. It’s about fixing problems.

AO: All of a sudden there was some real momentum. Congress poured $50 million into research to decrease errors.

39 states and DC passed laws encouraging doctors to apologize to patients.

This is what I’m calling the disclosure era.

DG: Ok so in this disclosure era, Alex, nurses, doctors and other medical staff are acknowledging mistakes and apologizing for them.

But you said they were historically afraid to do this. Did these new laws make those fears go away?

AO: Well these apology laws offered some protection from lawsuits. But it’s not like clinicians were put in some hermetically sealed bubble. There was still some exposure to litigation.

But the disclosure era, Dan, was really the start of a culture change, and the beginning of the era we are in now. Which I’m calling the fix-it era. The seeds of this start in the early 2000s.

And Julie Morath was on the cutting edge, in her role as the Chief Operating Officer of Minnesota Children’s Hospital.

Julie Morath: We had to learn to talk about it. When things go wrong, it 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, all create barriers. And so we needed a new vocabulary and a new way to talk about this. 

AO: Under Julie the hospital took accountability. And began fixing the systems behind the mistakes.

Here was the new idea: the source of the problem, in most cases, was poor communication and a bad process, not bad doctors and nurses

At Minnesota Children’s staff and parents began reporting errors. And that says Julie says this helped the hospital address some systemic issues.

JM: And we kept up a steady drumbeat. That safety was part of everything we did. There was a different level of transparency.

DG: Alex, this sounds like a big improvement. But can you give me an example of how this worked in practice?

AO: Yes, I can. Remember Stephen

DG: Yea he’s the doctor who hid that medication error back in the 70s.

AO: Right. Well fast forward 30 years, he’s working at Children’s under Julie’s new transparency program.

He has another serious medication mistake. But in this new system he handles it totally differently.

He tells the patient’s family right away. In the following weeks, doctors revamped the medication order process to protect against a repeat.

Dan, this program a blueprint for what are today known as Communication and Resolution Programs or CRPs for short

DG: Another great health policy acronym Alex. Can you break down the key components of them?

AO: First, every potential error triggers a review and conversation with patients. And if the hospital finds it’s their fault, they offer patients compensation in the form of services and or money. 

And this part is key, Dan, much of this information cannot be included in a lawsuit.

That makes doctors and hospitals feel comfortable about being totally upfront.

Now, an estimated 400 hospitals have adopted these programs. But that’s only about 6 percent of all hospitals.

DG: This sounds so much more comprehensive. Now as you said only a couple hundred hospitals are doing this. So there’s probably not great data but do we know how well these programs are working?

AO: You are right Dan; the data is limited.

There are three studies from individual hospitals that found liability costs dropped and cases were resolved faster than going to court.

And then there is an independent study of four hospitals in Massachusetts that found CRPs didn’t lead to increases in liability costs.

According to Tom Gallagher, the leading researcher in the field at the University of Washington, the most definitive thing we can say is that these CRPs don’t raise liability costs.

Tom Gallagher: 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.

AO: And Dan, when it comes to the patients, in surveys they report feeling less angry or betrayed and more likely to continue getting care at the same hospital.

That’s exactly what happened with Jack Gentry, a 70-year-old who lives outside Baltimore.

In April 2013, an instrument bruised his spinal cord during a surgery at Maryland-based MedStar Health. He was paralyzed from the upper chest down.

MedStar took responsibility. Plus they paid for his medical bills, wheelchairs and there’s a lump sum settlement too.

Jack Gentry: Those things just made me be capable, or allowed me to focus on getting better and work on my rehab.

AO: A lot of people around the country, Dan, point to Jack’s story as an example of how this works.

But the thing that’s weird, at least to me, is that he’s one of the few people I found who’s had success with one of these CRPs.

DG: Alex, do you think a lack of anecdotes means these programs aren’t working?

AO: That’s a hard question to answer. And it’s because there is this transparency paradox.

In exchange for hospitals and doctors being totally open about their mistakes, they want protection from lawsuits.

So the discussions and settlements with patients are secret. All this confidentiality makes it hard to evaluate the programs.

DG: Sounds like these models may not increase litigation costs for hospitals. And patients report being satisfied. But there’s a lot we just don’t know about whether communication and resolution programs really work.

Given that, what’s your best sense, Alex ,are we going to see more of these programs or what?

AO: I think so Dan, and for three reasons: money, politics, and patients.

I say money, because some malpractice insurers are pushing hospitals to adopt these models because of the potentially lower lawsuit costs.

And politics because people who have suffered are putting more public pressure on lawmakers.

Combined these lobbying efforts have led six states including Colorado and Iowa to pass laws that make it easier for hospitals to apologize and fix the problem. And keep all of that outside of court.

DG: And then you’ve got this White House commission, right?

AO: Yeah, they’re pushing federal health officials to require all 6,000 plus hospitals to adopt CRPs in the next five years or face financial penalties.

And Tom, the researcher from the University of Washington, says he’s already heard from hospitals. They got the memo.

TG: Ideally health care organizations would be motivated solely by the sort of the moral and ethical reasons why programs make sense. But the reality is, to have this elevated to that level, is going to be very helpful in terms of organizations deciding what to focus on.

DG: Alex, sounds like there’s more momentum for this than there ever has been.

Over the last two decades patient safety advocates have been thinking about how to solve problems from a hospital’s perspective. How to incentivize hospitals and doctors to speak up.

But bringing it back to the patients, sounds like they have been a bit of an afterthought. So, I’m curious, are these programs as good for patients as they might be for hospitals?

AO: The field is starting to research whether patients are getting what that they need.  And some of it is being funded by patients who have been hurt. 

DG: Thanks so much for your reporting on this Alex.

AO: You’re welcome Dan.

DG: One of the families funding this work is Jeff Goldenberg and Naomi Kirtner.

They’ve spent the better part of the last decade trying to improve patient safety after their daughter Talia’s death.

Jeff and Naomi do this work because they want to give patients a voice. They feel like their daughter’s voice was literally taken from her the day she fell into a coma.

NK: We didn’t choose patient safety the way some people do. We came to it because of Talia’s death, but so we feel morally obligated then to do something about it. It’s grueling, it’s exhausting, and it takes from us.

DG: Jeff says, the message behind their research is this: show up for your patients in good times and in bad.

JG: To abandon patients after you harm them is like you’re leaving them alone at their point of greatest need. I mean, you’re either caring for them or you’re not. And caring for them means caring for them all the way 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.

DG: As far as Jeff and Naomi are concerned, the point when providers internalize that message, that will be success.

I’m Dan Gorenstein. This is Tradeoffs.