Who Decides Whether This 26-Year-Old Woman Gets A Lung Transplant?
This is the first of two stories we're doing this week on organ transplants. See the second story, What Air Traffic Can Teach Us About Kidney Transplants
Ashley Dias, 26, is waiting for lungs. She has cystic fibrosis and needs a lung transplant to survive. She's got a tracheostomy tube in her neck so she can only mouth out words.
When doctors come to see Ashley in her hospital room at the Cleveland Clinic, she has only one question. She pulls out a marker and writes in enormous capital letters, as if it's the only thing she's ever wanted a voice to say:
ANY NEWS ON LUNGS
So far, there is no news on lungs. Ashley's still waiting.
Ashley's doctor, Marie Budev, has 124 patients on the waiting list for a lung transplant. The doctor desperately wants all of them to get transplants. But there aren't enough lungs to go around.
Scarcity is a problem with organ transplants in general. And, unlike other scarce resources, organs can't be bought or sold. So doctors have had to develop systems to figure out who should get transplants and who should wait. Coming up with a system that works well is very tricky.
Consider the story of what happened with livers.
Before 2002, being in the intensive care unit bumped up patients on the waiting list for livers. The assumption was that patients in the ICU were sicker. But in March 2002, the rules were changed, and being in the ICU no longer affected a patient's place on the list. Suddenly, far fewer liver patients were in the ICU.
In other words, doctors had been putting liver patients in the ICU not because they needed to be there, but simply to increase their chances of getting a liver.
"I care more about my patients than I care about patients in another city," says Dr. William Carey, a liver specialist at the Cleveland Clinic. "And it clearly is in the interest of my patient to get transplanted however I can make that happen."
Carey says his job is to do what's in the best interest of his patient. But it's also a doctor's job to do no harm. And in this case, a doctor acting in the best interest of his patient can cause harm by forcing other patients to wait — or worse.
"Many, many people die on the waiting list," says Jason Snyder, a UCLA economist who has studied organ allocation. "It's a really tough problem."
Problems with organ allocation haven't been limited to livers. Budev, Ashley's doctor, says lung doctors realized a few years ago that they were also gaming the system.
In 2005, lung doctors followed the liver doctors and put in place a system that would, among other things, make it harder for doctors to work the system in favor of their patients.
The system for lungs scores patients on objective medical data, including how much extra oxygen a patient needs and how far she can walk.
"There's really no way for me to manipulate that score to put that patient higher on the list," Budev says. "There's really no way to game the system."
Doctors have added a key check to the system: They are audited very closely. So if a doctor tried to, say, put all his patients on more oxygen in order to move them up the list, they would probably get caught. If not for the audits, Budev says, she would be tempted to bend the rules to help patients like Ashley move up the list.
For a system like this to work, you need people like Budev who understand that they are tempted to game the system. And a group of independent people — the auditors — trying to keep those tempted people in check.
"That patient is everything," Budev says. "And that's why I think we can't be trusted."
MELISSA BLOCK, HOST:
This is ALL THINGS CONSIDERED from NPR News. I'm Melissa Block.
ROBERT SIEGEL, HOST:
And I'm Robert Siegel. There is a chronic shortage of organs for transplant in this country. Over the years, doctors have tried to design equitable transparent systems to decide who gets a new heart or lungs, but they keep running into one very tricky obstacle: themselves. When it comes to organ transplants, a doctor's desire to do what's best for his patient can end up hurting someone else's patient.
Chana Joffe-Walt of our Planet Money team explains.
CHANA JOFFE-WALT, BYLINE: You have to understand the position doctors are in every day. You're a doctor and you know there aren't enough organs to go around, but you also know your patients really, really well, patients who are sick, some of whom are dying.
So you're a doctor and every day you meet someone like Ashley Dias. Ashley's waiting for lungs. She's 26 years old, has cystic fibrosis. She's got a tracheostomy tube in her neck, so she can only mouth out words, words her mom then repeats for her.
UNIDENTIFIED WOMAN: She (unintelligible) with the machine. She will breathe normal.
JOFFE-WALT: At some point, Ashley gives up on speaking and types a text into her phone and hands it to her mom.
UNIDENTIFIED WOMAN: As much as I text, I never seem to get my point across and that's really frustrating.
JOFFE-WALT: Ashley grabs the phone back from her mom and shakes her head at that last part. She didn't type that's really frustrating. Her mom added that part, which seems to be really frustrating to Ashley.
UNIDENTIFIED MAN: Hi. How are you?
UNIDENTIFIED WOMAN: Hi. I'm well, thanks. Yourself?
UNIDENTIFIED MAN: I'm fine. Are you Ashley's mom?
UNIDENTIFIED WOMAN: I am.
UNIDENTIFIED MAN: OK.
JOFFE-WALT: When doctors do come to see Ashley, she only has one question. She pulls out a marker and writes in enormous, big caps, as if it is the only thing she has ever wanted a voice to say. Any news on lungs?
UNIDENTIFIED MAN: No. You will be the first person to know. OK? OK? It'll happen. It'll happen.
UNIDENTIFIED WOMAN: Thank you.
UNIDENTIFIED MAN: All right? Have a great day. Take care. Nice meeting you.
UNIDENTIFIED WOMAN: You, too. See? 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: Ashley has no words for her mom at this point, mouthed or texted. She just sits back and continues waiting. And this - if you were a doctor, this is image you hold in your mind: Ashley waiting, when you're driving to work, falling asleep.
MARIE BUDEV: There's 124 patients right now on my list.
JOFFE-WALT: Ashley Dias' doctor is Dr. Marie Budev at the Cleveland clinic. She desperately wants Ashley to get lungs and she also wants that for her 123 other patients.
How many of those 124 will get lungs?
BUDEV: It depends on who's dying out there, what organs are available.
JOFFE-WALT: And what condition the lungs are in. Car accidents, Dr. Budev says, 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: When they do get good lungs, there are rules, strict rules, about who gets those lungs, just like there are with hearts, kidneys, livers. But here's where the fact that doctors always want to help their patients can become a problem. Consider the story of what happened with liver transplants.
JASON SNYDER: So, before 2002, the waiting list was ordered in terms of the sickest person first.
JOFFE-WALT: This is Jason Snyder, an economist at UCLA who has studied a bizarre finding from the liver allocation system. Before 2002, to determine which liver patients were the sickest, they would measure people's blood and look at whether or not they were in the intensive care unit, the ICU. For years, that was what determined your place on the liver waiting list.
SNYDER: Yes. Up until March 1st, 2002.
JOFFE-WALT: March 1st, 2002, they changed the rules. They said, forget the ICU. We will only measure your blood and, almost immediately, the ICU got a lot emptier, which seemed to indicate that doctors were putting their patients in the ICU not because they necessarily needed to be there, but to get them bumped up the waiting list. And it's not just that it seemed that way. Liver doctors will tell you now, yeah. That's what we were doing.
Here's Dr. William Carey, a hepatologist at the Cleveland clinic.
WILLIAM CAREY: I mean, let's face it. I have patients. I want my patients to get transplanted. 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: Doing what is in the best interests of his patient, Dr. Carey reminds me, that's his job. But here's what's complicated. It is also a doctor's job to do no harm. And in this case, doctors acting in the best interest of their patient causes harm. It means other people's patients will have to wait longer. Here's Jason Snyder again.
SNYDER: 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 a really tough problem.
JOFFE-WALT: It was clear to everyone there was a problem, not just liver doctors. Dr. Budev, Ashley's doctor, told me lung doctors realized they were doing a similar thing.
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: In 2005, the lung doctors followed the liver doctors and put in place a system that would, among other things, control them, a system that would score patients on objective medical data only, how much oxygen a patient is on, how far he or she can walk.
BUDEV: 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: This is the ungamable system Ashley Dias finds herself in today. She's actually near the top of the list, although she's small and probably needs pediatric lungs, which don't become available often.
I asked Dr. Budev, what if Ashley wasn't near the top? There's really nothing you could do to help her? Dr. Budev says 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 to walk less because that will increase the score.
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.
JOFFE-WALT: Do you think you would if you weren't audited?
BUDEV: I would be tempted to. I would be tempted to.
JOFFE-WALT: For a system like this to work, you need people like Dr. Budev who understand they are tempted and you need a group of independent people, auditors, trying to keep those tempted people in check.
Chana Joffe-Walt, NPR News.
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