ROBERT SMITH, HOST:
Hey, everyone. Today, we are bringing you one of our favorite podcasts that we've ever done. It's from a few years ago, and it was reported by Chana Joffe-Walt and David Kestenbaum. And be sure and stay till the end because there is an update on the story.
(SOUNDBITE OF ARCHIVED BROADCAST)
CHANA JOFFE-WALT, BYLINE: About six weeks ago, Ashley Dias's lungs gave out. She was rushed to the Cleveland Clinic, and she was told she'd need new lungs to survive. Ashley has cystic fibrosis. She's 26. So this didn't come as a total surprise. But what has been surprisingly hard for her to deal with - life-changing for her actually - is that she can't speak. She's on a breathing machine. She has a tracheostomy tube in her neck. So basically from the moment Ashley was told she was facing death, she's had to depend on her mother to speak for her.
ASHLEY DIAS: She just assumed with the machine she would breathe normal, but she's not. She still struggles when she wakes up.
JOFFE-WALT: Ashley mouths words like this to her mom to communicate. Or she'll type a text into her phone and hand it to her mom, Marylynne. When I ask Ashley what she's into, she types to me, talking, friends and shopping in that order. Talking - it's her favorite thing to do.
DIAS: As much as I text, I never seem to get my point across, and that's really frustrating.
JOFFE-WALT: Ashley shakes her head as her mom says that last part - that's really frustrating. Not to say that it isn't, just she didn't type those words. Her mom added that part, which seems to be really frustrating to Ashley.
UNIDENTIFIED DOCTOR: Hi, how are you?
DIAS: I'm well, thanks and yourself?
UNIDENTIFIED DOCTOR: I'm fine. Are you Ashley's mom?
DIAS: I am.
JOFFE-WALT: The only time I see Ashley make a real effort, an enormous effort actually at communication is when the doctor comes in.
UNIDENTIFIED DOCTOR: Have a quiet night? Got some sleep? Anything else? 'Cause otherwise it's status quo. We're waiting
JOFFE-WALT: At this point, Ashley pulls out a marker from somewhere and writes in enormous big caps as if it is the only thing she has ever wanted a voice to say. She writes, any news on lungs?
UNIDENTIFIED DOCTOR: No. You will be the first person to know, OK? OK. It'll happen. It'll happen. It's a long wait, and I know it's frustrating. Everyone always feels this way when they're waiting for long, but it'll happen, all right? Have a great day. Nice meeting you.
DIAS: You too.
He wouldn't say it's going happen, so you have to - you can't be discouraged. They all feel as confident as they can, so you do, too. You have to, OK? It's going to happen.
JOFFE-WALT: At this point, Ashley doesn't text or mouth anything back to her mom. She doesn't even look at her. She just settles back into waiting, waiting for a peculiar bureaucratic system to give her life.
Welcome to PLANET MONEY. I'm Chana Joffe-Walt.
DAVID KESTENBAUM, BYLINE: And I'm David Kestenbaum. Today's show - how do you decide who gets lungs?
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KESTENBAUM: When you think about it, the situation Ashley is in, and organs in general, present a pretty classic economic problem. They are a scarce resource, like oil or water. Lots more people want organs than there are organs available. But with oil or water, we have a mechanism to distribute those things. We have markets. You can buy and sell water. Ashley can't buy lungs.
JOFFE-WALT: We don't allow people to buy and sell organs. And whether or not we should, that's a whole debate we are not going to get into on this show, except to say that without markets, without money exchanged, it just gets really complicated to determine who gets what.
KESTENBAUM: Right now, anyone with a couple bucks can buy a gallon of gas. If that wasn't the case, like, how would you allocate gas? How would you decide who got gasoline? And this is the situation we find ourselves in today when it comes to organs.
JOFFE-WALT: So that's the show today. You can't buy them. There aren't enough to go around, which means doctors have to sit down and come up with a set of rules to decide how to divvy them up.
MARIE BUDEV: I have 124 patients right now on my list.
JOFFE-WALT: This is Ashley's doctor, Dr. Marie Budev. She's the head of lung transplants at the Cleveland Clinic. And she's a person accustomed to delivering morbid information sort of as if she's listing off her least favorite cities to vacation.
How many of those 124 will get lungs?
BUDEV: Depends on who's dying out there, what organs are available.
JOFFE-WALT: When someone does die, Dr. Budev gets a call, and the first thing she'll ask on that call is the circumstances. Car accidents, she says, they can be great for hearts and livers, but not so much for lungs. The very best thing for lungs...
BUDEV: Either gunshot wounds to the head - that sort of thing - or strokes or bleeding. But we do take motor vehicle accident patients as long as their lungs aren't severely contused.
JOFFE-WALT: Dr. Budev is a person intimately acquainted with how difficult it is to design an allocation system for organs that does not rely on money, a system that doesn't have price, like a market does, at the very center of it. She spent years trying to come up with an alternative to a market, but she says it's incredibly difficult to do, even when everyone involved is trying to do the best thing. For instance, take the case of what happened with the system for livers. Here's Jason Snyder, an economist at UCLA.
JASON SNYDER: So before 2002, the way that you would get a liver is that you'd have to get on a waiting list. And the waiting list was ordered in terms of the sickest person first. So they were trying to - they were trying to get the sickest people the livers first.
JOFFE-WALT: To do this, they'd look at how sick people were. They'd do blood tests and look at whether or not they were in the ICU, which seems sensible.
SNYDER: So the ICU - if you were in the intensive care unit, it essentially just moved you higher up the list.
JOFFE-WALT: You got more priority.
SNYDER: You got more priority.
JOFFE-WALT: And that was how livers were distributed for a long time?
SNYDER: Yes, up until March 1, 2002.
JOFFE-WALT: March 1, 2002 - the small group of medical professionals who make the rules changed the rules slightly. They said, you know what? Forget the ICU. We will just measure your blood, bilirubin levels, creatinine - things like that. And we won't look at whether or not you're in the ICU. And basically, immediately after that change, everything was different. The ICU got a lot emptier. In the year leading up to the change to February 2002, about 24 percent of the patients who got liver transplants were in the ICU prior to transplant. In the next year, after the change, it went down to about half that - 13 percent.
SNYDER: It's a really striking response at precisely the point the policy was implemented.
JOFFE-WALT: So doctors were putting people in ICU who didn't need to be in the ICU?
SNYDER: Yes, that's what it appears.
WILLIAM CAREY: I mean, let's face it. I have patients. I want my patients to get transplanted.
JOFFE-WALT: When you talk to liver doctors about this time, they say, yeah, that's what was happening. This is Dr. William Carey. He's a liver doctor at the Cleveland Clinic. And he says it helped your patients' chances if you put them in the ICU.
CAREY: I care more about my patients than I care about patients in another city, in another part of the country. And it clearly is in the interest of my patient to get transplanted however I can make that happen.
JOFFE-WALT: Dr. Carey says he will always be biased towards his patients. He knows that. And he rejects the idea that any liver doctor actually set out to consciously game the system in their patients' favor. He says you always believe you're acting on your best medical judgment. And in fact, when I asked Dr. Carey, did you, at your transplant center, put people in the ICU who didn't need to be there...
CAREY: I think not. I think not. But I would say that nobody thinks that they are doing that. We're playing exactly by the book. But that other center across the state or across the region, they're not playing by the book. And I'm sure everyone said the same thing about us. And, you know, it's just one of those - one of those things.
JOFFE-WALT: All this - for me, I have to say - raises the question, what is a doctor's job? Like, we often say a doctor's job is to do no harm. But in this case, doctors acting in the best interest of their patients causes problems. Jason Snyder, the UCLA economist I talked to, says it's pretty clear that in this case, doctors acting in their patients' best interest causes harm - 'cause consider a doctor trying to get their patient higher up on the liver list by putting them in the ICU.
SNYDER: This has the potential to distort who gets a liver, that if a doctor puts one person high on the list, the other individuals have to wait longer. And quite often, what happens in the world of liver transplant is that it's not just an issue of waiting. Many, many people die on the waiting list.
JOFFE-WALT: So we're actually talking about a doctor making a decision that helps their patients and potentially kills other people's patients.
SNYDER: Absolutely, I think it's - it's a really tough problem.
JOFFE-WALT: We need doctors to be involved in how organs should be divvied up. Doctors know how to tell who's sick. They know who's going to get sicker without a transplant, how quickly that's going to happen, how the organ's going to do in a given patient's body. So we need doctors' consultation in the divvying up of organs just the same way we need doctors to decide if we need an exam or a surgery.
But, of course, there is scarcity in organs and throughout our health care system. There are not enough organs, just like there's not limitless money or doctors' time or drugs or high-end technology. By throwing people in the ICU to get a liver who don't need to be in the ICU, in addition to defeating the whole purpose of the system, that wastes a lot of money. The ICU is incredibly expensive.
When the liver numbers came out, they were kind of hard to ignore. Dr. Budev, the lung doctor, told me around this time, the lung people realized they had a similar problem. In the same way the ICU got you bumped up on the list for a liver, for lungs it was all about time. So the longer that you were on the list for lungs, the higher up you were. It didn't really matter how sick you were, just how long you'd been waiting. So there was an easy way to help a patient out and bump them up the list. If you're a doctor, you sign them up early - even before they needed a transplant.
BUDEV: I think we all - we, all of us - got caught up in this system also, saying, well, you know what, as soon as someone gets referred to us, whether they're really sick or not, maybe we should just get them on the list. And so that's how we were trying to overcome the system. So we were all putting all these patients that were not sick enough on a list, just so that they could accrue time in case they did become sicker.
JOFFE-WALT: Dr. Budev says they all knew the system was flawed in many ways. But she says it was hard to recognize part of the problem was us, doctors and their desire to do what's right for patients. Dr. Budev says you can't stop doctors from doing that. That's their job.
BUDEV: That patient is everything, and that's why I think we can't be trusted.
JOFFE-WALT: What's interesting about what you're saying is you're saying you need to be controlled.
BUDEV: We do.
JOFFE-WALT: So in 2005, the lung doctors followed the liver doctors. And they put into place a system that would, among many other things, try to control them, control their desire to always do what is in the best interest of the patient right in front of them. They devised a new scoring system. They had new objective rules to rank everyone on the waiting list, all based on medical data - data that could not be manipulated by doctors, like how much oxygen a patient's on or how far he or she can walk.
BUDEV: The scoring system is much fairer. It is based on objective data. There is nothing subjective about the score. There's no way for me to manipulate that score to put that patient higher on the list. There is really no way to game the system.
JOFFE-WALT: And this is the system that Ashley Dias finds herself in today. And it's worked out pretty well for her. She's near the top of the list, but Ashley's small, which means she probably needs pediatric lungs. And even at the top of the list, pediatric lungs don't become available very often.
As Dr. Budev was explaining this to me, I asked her, what if Ashley wasn't near the top of the list? What if the system worked out worse for her? There's really nothing you could do to help her? And Dr. Budev says the system doesn't really allow that. But then she also said, OK, no matter how hard you try to design a system that is completely resistant to manipulation, there's always some room.
BUDEV: I guess there is room for you to put everybody you have on 100 percent oxygen and tell them not to walk a certain number of feet, to walk less, because that will increase the score. I would hope that no one would do that.
JOFFE-WALT: Do people do that?
BUDEV: I'm sure people have. I think human nature sometimes in the interest of a patient, you're going to be tempted.
JOFFE-WALT: But you don't do that.
BUDEV: We don't, and most people don't. The reason why is we're audited very closely for each patient we list.
JOFFE-WALT: Do you think you would if you weren't audited?
BUDEV: I would be tempted to.
JOFFE-WALT: For a system like this to work, you need people who understand, like Dr. Budev does, that she gets tempted. And you also need auditors to keep in check the tempted people. And that is only half the battle, or it's actually like a tenth of the battle, because you still have to figure out what the rules should actually be. You know, do you want organs to go to the sickest people as they do with livers, or do you want it to go to the people who have been waiting the longest on the list? Does that seem more fair? Or maybe you want to give the best organs to the youngest patients? You want to maximize the life of the organ?
These questions, this is where the debate continues today in all organs. It's really hard to know who gets something like lungs when you don't want to let people pay for it, when you don't have prices, when you don't have a regular market.
(SOUNDBITE OF SONG, "HEARTLINES")
FLORENCE AND THE MACHINE: (Singing) Just keep following the heartlines on your hand. Just keep following the heartlines on your hand.
SMITH: This story originally aired in May of 2012 and today in 2015, the debate continues. Not much has changed. Ashley waited another month for her lungs. She did not get them, and she died waiting. And Chana Joffe-Walt joined me afterwards to talk about this and explain why Ashley didn't get her lungs in time.
JOFFE-WALT: Well, she was really close to the top of the list. The list changes every day, you know, depending on who's waiting, but she was really close to the top of the list. Her problem was that she was really small, as a lot of people with cystic fibrosis are, so she basically needed a child's lungs and those are harder to come by. So there is this question in the whole allocation system now of if, you know, doctors want to tweak it a little bit to maybe give somebody like Ashley more points so that she would be at the very, very top of the list, if any lungs that would fit her body came available.
SMITH: Now are they changing this all the time? I mean, does one sad story after another come and then everyone sits around and goes, we have to do something about this?
JOFFE-WALT: No, that's...
SMITH: And that must be incredibly difficult.
JOFFE-WALT: ...And doctors are pretty self-aware that they're very biased towards their patients. And you see - you meet somebody like Ashley and you totally want the system to prioritize this particular disadvantage, but there's a ton of disadvantages. You know, people have - don't match organs for all sorts of reasons. They have a weird blood type or they - you know, whatever. There's a million reasons why it would be hard for you to match with an organ. So it's, like, something that they're discussing all the time.
SMITH: Yeah. I mean, it must be hard because after hearing the story of Ashley, like, you're just pulling for her.
JOFFE-WALT: You totally want her to get lungs.
SMITH: I want her to get the lungs, and yet the doctors see those stories again and again.
(SOUNDBITE OF SONG, "HEARTLINES")
FLORICE AND THE MACHINE: (Singing) Just keep following the heartlines on your hand.
SMITH: We always love to hear what you think of the program. You should email us, email@example.com, or you can find us on Twitter. We read those, too, @planetmoney. Now, NPR is recommending another program to listen to now that you're finished with PLANET MONEY. It's - how do I put this? It's - imagine a bunch of really short podcasts all strung together in real time about the news of the day. It airs every morning. It's called Morning Edition. And if you haven't heard it, well, you really should. You can listen to Morning Edition tomorrow on the radio and find your local station schedule at npr.org. Our producer today is Nadia Wilson. I'm Robert Smith. Thanks for listening.
(SOUNDBITE OF SONG, "HEARTLINES")
FLORICE AND THE MACHINE: (Singing) Keep it up. I know you can. Just keep following the heartlines on your hand.
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