Part 4 of the TED Radio Hour episode Transparency.
About Leilani Schweitzer's TED Talk
Leilani Schweitzer lost her son due to a medical error. She says the hospital's honesty and openness helped her heal. She now works to provide that level of honesty to patients at the same hospital.
About Leilani Schweitzer
She uses her own tragic experience to help families and hospitals navigate the complicated emotions and legal issues associated with medical errors.
She advocates greater disclosure and transparency in health care.
GUY RAZ, HOST:
Have you ever been in a situation where you are - you're apologizing on behalf of your hospital?
LEILANI SCHWEITZER: Yes. That's a core part of my job.
SCHWEITZER: I told somebody the other day that I'm a professional apologizer - kind of what I do.
RAZ: This is Leilani Schweitzer, and her job is all about transparency.
SCHWEITZER: I'm the assistant vice president for communication and resolution at Stanford Hospital.
RAZ: And what does that mean?
SCHWEITZER: So that means that if you or your family member have something unexpected happen in the hospital, chances are I'm going to be talking to you. So I'm going to explain our process of what we want to figure out, how we want to come to understand what happened, what we want to learn. And if we determine it could have been prevented we're going to apologize, and we are going to do our best to make amends for what happened.
RAZ: And having a job like that, having a hospital even create a position like the one Leilani has is actually pretty rare because hospitals aren't exactly the most transparent places.
SCHWEITZER: I think that's a fair statement, yes. Because my role is unique, people hear about it. And I've had people from hospitals around the country who will call me and they'll say things like, I don't know what happened to my husband during the operation, and no one will talk to me. And it really speaks to the voice of people who are looking to find answers.
And they need that to heal. They really do. Whenever something unexpected happens to any of us, we want to understand what it was.
RAZ: And Leilani started doing this kind of work at Stanford Hospital after something tragic happened to her there. Leilani Schweitzer tells her story from the TED stage.
(SOUNDBITE OF TED TALK)
SCHWEITZER: The nurse grabbed the recliner and jerked me awake. I heard code blue, and the room filled with people. In that instant, I knew he was gone. The doctors' words attempted optimism, but their faces betrayed them. My 20-month-old son had just died in one of the country's leading hospitals.
That night, when he had been admitted to the hospital, white circles with wires were stuck under Gabriel's bare little chest to monitor his breathing and heartbeat. Every time he made the slightest little wiggle, the alarms would go off - and they're loud. Every time we would almost be asleep, the racket and worry would start all over again. We'd already spent sleepless days and nights in my local hospital, where he had been misdiagnosed again and again. But now we were in a university hospital for children. Finally, here, I felt safe - and very tired.
And I'm sure the nurse could see how tired I was, and she wanted to take care of me, too. So she did the logical thing. She turned off the alarms on the machine next to his bed, and I thanked her when she did it. I was so grateful for the prospect of silence and sleep.
Later, doctors and administrators from the hospital would explain that actually, unknowingly, she had done a lot more. She hadn't just turned the racket off in the room. She turned off all of the alarms everywhere - in his room, at the nurses station and on her pager.
Later, the manufacturers of the monitors would explain - they didn't think anyone would go through the trouble of seven screens to turn off all of the alarms, so they didn't include a failsafe to stop her. They were wrong.
So when Gabriel's heart stopped beating, there was no sound, just quiet. Nothing woke me until several minutes had passed and I was being jerked awake and the room filled with people and panic.
(SOUNDBITE OF MUSIC)
RAZ: Did you - in those moments and then the hours and the days passed, was there anyone who was answering your questions - who was, you know, explaining what was going on to you?
SCHWEITZER: Yes. So now I recognize that the way Stanford treated me was really exceptional. But in that time, I just had no awareness of that. I mean, after Gabriel died, my sphere of what I could grasp was really quite small.
When I made a call, someone always answered and told me what was happening. The chief nursing officer and then also Gabriel's neurosurgeon, Dr. Edwards - he answered my calls. I never waited for more than a couple hours to have an email response. I didn't realize that I was something most hospitals would be afraid of. I thought that they were taking care of me.
RAZ: So I know you said your experience with Stanford was an exception. But how do - I mean, how do hospitals normally respond to these kinds of situations?
SCHWEITZER: Oh, they circle the wagons. They put their heads down. And now I know that many parents - if they lost a child the way that I did, they most likely would not get that dignity and respect of being told what happened to them. And it's profoundly damaging. And that is something that I don't want people to have to go through. It's a difficult experience for patients and families to go through, and it also really makes it more difficult to make people safer, to learn from what happened and to make sure that it doesn't happen again.
(SOUNDBITE OF TED TALK)
SCHWEITZER: Transparency in medicine can help heal our medical system. By being open and honest when the unexpected happens, we can learn from our mistakes. Unfortunately, hospital administrators don't tend to respond to medical errors with openness and transparency. They react with a legal version of fight or flight - deny and defend. Keep your head down, shut up, and let the lawyers handle everything.
It would have been easy for the university hospital administrators to blame the nurse, fire her and assume the problem had been solved because the bad apple was gone. It would have been typical deny-and-defend behavior for them to ignore my questions, to go silent and hope I couldn't gather my thoughts enough to file a lawsuit. It would have been a safe bet. But they didn't do that. They didn't prey on my vulnerability. Instead, they investigated. They explained, took responsibility and apologized. It made all of the difference. After the university hospital investigated Gabriel's death and the weakness in the monitors was discovered, all other hospitals using the same equipment were alerted to the vulnerability. Maybe that helped someone else. I will never know. But it still comforts me now.
Gabriel was treated at two different hospitals. He died because of mistakes made at both of them. Accidents that no one wanted to have happen. But how they responded to those mistakes was very deliberate. Both had the opportunity to learn from my son's death and be transparent, but only one did.
The university hospital didn't hide behind legal maneuvers and dismiss me, but the local hospital ignored me. By going silent, they didn't just humiliate me, they denied Gabriel his dignity. And after more than eight years, that wound is very far from healing.
RAZ: Why do you think the local hospital acted that way? I mean, why do hospitals just shut down and go into this, like, deny and defend mode, you know, instead of just talking to people like human beings?
SCHWEITZER: I think there's a few reasons. I don't think any of us like to admit when we've done something wrong. It can be far more difficult to admit that you've hurt somebody. That's a really difficult component. There's shame. There's guilt that's involved. There's fear. And maybe they have a culture that discourages people from speaking up. I think most hospitals probably do.
So there's many layers to overcome to be more transparent. It's far easier to stay in that rut of deny and defend than it is to get out and pull back the curtains and let the sunshine in. This is why people go to lawyers is because they feel that they don't have any other option. People don't hire lawyers because it's an easy or fun thing to do. They do it out of desperation.
RAZ: At a certain point, I mean, some of these hospitals, you know, they have to realize that being more transparent can, not only save them from lawsuits, but, you know, like you said, it can can help heal people who are involved, right?
SCHWEITZER: Oh, I think it does. So I've been in many meetings where we explain to patients and families what has happened. And those are difficult things to be part of. But it's a front row seat to the human condition. And I've seen an explanation move the guilt off of a mother's face. I mean, that is the power.
I have seen parents walk into a meeting with a physician where no one can lift their heads to look at each other. And by the end of that meeting, they are embracing. And it is remarkable what understanding can do for people.
RAZ: And you work at Stanford. I mean, you work at the hospital where Gabriel died.
SCHWEITZER: I do.
SCHWEITZER: I don't work physically in the building, though I am in there frequently. But this is the place where I do my work that I've been given the opportunities to do this work.
SCHWEITZER: It's Gabriel's legacy. It really is. And so I think about that a lot. I mean, to consider that I work with the legal team who are my dear friends and my close colleagues at the hospital where my son died because of a series of errors, you can't really make that stuff up. It's pretty profound. And, you know, frankly, I think every hospital could have a role like mine. Every hospital has a patient or a family member who's experienced something really tragic and who could help other patients.
RAZ: Leilani Schweitzer is the assistant vice president of communication and resolution at Stanford Hospital. You can see her entire talk at ted.npr.org.
(SOUNDBITE OF SONG, "TRANSPARENCY")
WHITE DENIM: (Singing) I just want to be a transparency, a big ol' light shining right through me. I'm beating the lines. Let the people see.
RAZ: Hey, thanks for listening to our show on transparency this week. If you want to find out more about who was on it, go to ted.npr.org. And to see hundreds more TED talks, check out ted.com or the TED app.
Our production staff at NPR includes Jeff Rogers, Sanaz Meshkinpour, Jinae West, Neva Grant, Rund Abdelfatah, Casey Herman and Rachel Faulkner with help from Daniel Shukin. Our intern is Benjamin Klempay. Our partners at TED are Chris Anderson, Colin Helms, Anna Phelan and Janet Lee. I'm Guy Raz, and you've been listening to ideas worth spreading right here on the TED Radio Hour from NPR. Transcript provided by NPR, Copyright NPR.