Need a new Liver? Drinkers to the back of the Line.

One day, when she was only 39, bar manager Jamie Imhof collapsed. While she lay in a coma, doctors told her family that they knew how to save her life: she needed an immediate liver transplant. But, transplant centers follow an informal “rule” when it comes to patients whose livers fail due to heavy alcohol use. Jamie would not be eligible for a new liver for six months. For a case as severe as Jamie’s, waiting six months would be a death sentence. We hear about the “six month rule” for liver transplants and why one Johns Hopkins surgeon says it’s a practice based on stigma, not science. 

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Show notes:
In addition to Jamie Imhof, this episode features interviews with:

Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics

Andrew Cameron, Surgeon-in-chief at Johns Hopkins Hospital, where Jamie had her surgery

If you or your loved one is struggling with alcohol use, visit the SAMHSA website to find help or call 1-800-662-HELP (4357).

The United Organ Transplant Service (UNOS) helps distribute organs for transplant across the country. You can read more about how livers are distributed at their website. 

To learn more about Andrew Cameron’s program that challenges the six month rule, read this article from Hopkins Medicine Magazine. 

To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide. 

The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.

See omnystudio.com/listener for privacy information.

What is playing god??

Life-and-death dilemmas. New medical technologies. Controversial treatments. In playing god? we hear from the patients whose lives were transformed—and sometimes saved—by medical innovations and the bioethicists who help guide complex decisions.

Ventilators can keep critically ill people alive, but when is it acceptable to turn the machines off? Organ transplants save lives, but when demand outpaces supply, how do we decide who gets them? Novel reproductive technologies can help people have babies in ways that are far beyond what nature allows. So, when should these “Brave New World” technologies be introduced, and who should control them? 

playing god? is a production of the Berman Institute of Bioethics at Johns Hopkins University, with generous support from The Greenwall Foundation. New episodes drop every Tuesday.

The Berman Institute has created a guide for each episode where you can learn more about the guests, the history, and the ethics issues at: bioethics.jhu.edu/playing-god

00:00:02
Speaker 1: I was in a room, a completely white room with a brown desk, and there was a older gentleman there in a sense, and there was a contract. There was like this piece of paper and a pen, and these words were specifically uttered to me. You can either choose not to accept this and just pass peacefully and not worry about anything, or if you take this gift, you'll be in the worst pain that you've ever experienced in your entire life. And I remember sitting there and just being stubborn like I am, And I said, oh, well, I think I know about pain.

00:00:38
Speaker 2: Jamie Imhoff was almost certainly dreaming. Who was she bargaining with? Was it God? As her life hung in the balance, she was heavily sedated in the hospital, drifting in and out of consciousness. A month earlier, she'd collapse on the floor of her apartment, her body contorting from intense cramps. Off to Jamie's collapse, doctors at her Baltimore hospital put her on life support. Her diagnosis multiple organ failure. Most importantly, her liver had stopped working. She was only thirty eight years old.

00:01:14
Speaker 1: They called my family right away, and pretty much to all my family, I was unsabable and to come out here and plan to book the funeral.

00:01:23
Speaker 2: Acute liver failure is a rare but life threatening condition. In Jamie's case, it was very obvious what had cause all that damage.

00:01:33
Speaker 1: A typical day of drinking at the time I collapsed started around early morning, maybe seven am eight am. I always had a bottle of Arka next to my bed when I woke up. If I did not take that initial first drink, I couldn't function, and then from there the rest of the day would be maintained on a certain level of alcohol in my body until.

00:01:56
Speaker 3: I went to bed.

00:01:57
Speaker 1: But at that point there was no pleasure in doing stuff. This was literally what we call maintenance drinking.

00:02:02
Speaker 2: Jamie was aware she had a problem with drinking. She'd been to rehab and managed to get sober for a few months at a time, but she worked as a bar manager. When life got stressful, she went right back to old habits, and that's how she ended up in the hospital. At this point, her only chance at survival was a liver transplant, but because alcohol use is what destroyed her liver, the doctors told Jamie's family she wasn't eligible for a transplant, not for another six months.

00:02:34
Speaker 1: My family. Upon hearing the news, they were not very happy. The idea of being denied care didn't make any sense to them.

00:02:43
Speaker 2: Jamie's family spent the next several days making phone calls, desperate to find a transplant center that would agree to save her life, but no luck. Eventually, they gave up and started speaking with a chaplain. They wanted his help deciding whether or not to let Jamie die.

00:03:03
Speaker 1: The doctors told my family that I could stay on life support for a definite period of time, but they did not recommend doing so.

00:03:12
Speaker 2: Now, clearly we're hearing from Jamie in the present day. She did manage to survive, but how had she come so close to dying? Doctors knew the life saving treatment she needed a live a transplant, so why wouldn't they give it to her? And how is that ethical? I'm Laurena Rora Hutchinson. I'm the director of the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. This season, I'm going behind the scenes to discover how some of the most significant medical innovations have impacted people's lives and continue to whether it's saving lives or creating babies. A new technology is usually waiting in the wings, along with a whole entourage of ethical questions. On today's show, liver transplants. They're often the only option to keep people with liver failure alive, but since there aren't enough livers to go around, transplant centers have to decide what's the most ethical way to determine who gets them first, and when and what if. Solving for one ethical dilemma creates a whole host of new ethical problems for patients and families. From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics, this is playing god. To get some perspective on Jamie's story, I called up my colleague, bioethicist Jeffrey Kahn. If you're a regular listener, you've heard him on our show before. So, Jeff, why was it that someone like Jamie, who clearly desperately needed a new liver, was initially not going to get a transplant.

00:04:59
Speaker 4: It's a good question, Lauren, and to answer it, we need to go back to the early days of being able to transplant solid organs. Those are kidneys, livers, lungs, hearts, and there just aren't enough and never have been enough. Donated organs to transplant to everybody who needs one. In the case of livers, people who need a liver transplant are really, really sick and can only wait for a very short time before either being transplanted and surviving or not being transplanted and dying. And so people in the transplant community and then people from public policy and ethics like me got pulled in to help decide how to allocate who should get, who should not, who can wait, who in the end won't actually receive a donated organ. This is a recurring issue in ethics of transplant and bioethics generally. When there's not enough of a thing to go around, who gets access to it and therefore who does not?

00:05:58
Speaker 2: So how is the decision made about who gets the priority for these livers?

00:06:03
Speaker 4: Every organ has a somewhat different system. For kidneys, there's a waiting list, and that's because we can ask people to wait and be on a technology called dialysis until their number gets called. For livers, it's a different story. It's a weightless but it's really a scored weightless. So the higher your score, the sicker you are, and therefore the higher on the priority list you get.

00:06:29
Speaker 2: And so how does the system treat people like Jamie who need a new liver because of a history of harmful alcohol use.

00:06:36
Speaker 4: The issue of needing a liver transplant after abuse of alcohol or overuse of alcohol created an additional layer of ethical dilemma. So on top of the question about what do we do when we don't have enough livers for all the people who need a liver transplant, layered over that is the idea that the reason that the person needs a liver transplant owes to their behavior. And so the question then is, well, what's to prevent them if they get a transplant from doing the same thing that they did to cause the need for the first transplant? And so that's a kind of societal utilitarian question, is this the best way to allocate this very scarce resource? And the question about behavior and responsibility is not a trivial question in the context of liver transplant because alcohol related liver disease is now the number one reason that adults in the US need a liver transplant, and these patients tend to be really, really sick by the time they end up coming to the doctor and seeking treatment, and so they become top of the list's highest priority when they show up, and that creates or could create some really understandable resentment. Wait, why is it that this person who undertook this behavior did this to themselves? Why should they get a liver transplant before somebody with cancer or some child that may have been born with a disease that's certainly not within their control, But isn't harmful?

00:08:10
Speaker 2: Alcohol use also considered a disease.

00:08:13
Speaker 4: It is, And as we do more research about addiction and behavior, I think it's becoming more clear that there's a disease aspect, there's also some behavioral and controllable aspects, but that it's very complicated. There are genetic components, there are environmental components, there are socioeconomic components, and so these are complicated areas where it doesn't make sense to just sort of point to someone and say they're responsible for the bad health effects of their behavior.

00:08:46
Speaker 2: So what approach have transplant centers come up with allocating livers to people with and without a history of alcohol use? How is it fair to people with them?

00:08:56
Speaker 4: Without going back now a number of decades to the nineteen eighties, transplant centers that do liver transplants in the US and really has become a global practice. Have required patients with the history of alcohol abuse who need a liver transplant to show that they can be sober no use of alcohol for at least six months before they're eligible for a transplant. That's been named the so called six month rule. So, in effect, the rule requires patients to go off and cure themselves of one disease alcohol abuse before we'll treat them for another disease. That doesn't seem fair, but that's the approach that has been implemented. There were actually at least three reasons that transplant centers and the policy makers around liver transplantation decided that this was the right approach. First, there was a thought that if patients stopped using alcohol for a period of time, their livers might actually come back and heal themselves. The second and maybe more important reason for some period of sobriety was the view that they're blameworthy, like they brought it on themselves, and we shouldn't reward somebody who brought something on themselves by giving them access to a life saving liver transplant when there are other people who didn't behave badly also waiting. You know, we better make sure that the people who were going to offer this very scarce life saving treatment to are not going to do the same thing that required the transplant in the first place. And then the third reason is a sort of you know, what will the members of society think about donating their organs when they see that the people who are getting livers are the people who abused alcohol? Will that make people less likely to be willing to be organ donors. So all of that played into the decision about, you know, what to do with somebody like Jamie, how can we still think about transplants for them in a way that ethically acceptable?

00:11:02
Speaker 2: So what have we learned from having this six month rule in place?

00:11:05
Speaker 4: Well, the first thing that we learned is that making people wait six months is a death sentence for half of them. It turns out that the liver does not regenerate when given a chance to be alcohol free. It's just that people who have abused alcohol have effectively killed their liver, and so making them wait for six months is they can't survive it. Also, it turns out research has shown that the six month rule is a bad predictor of whether someone will stay sober after a transplant and it turns out it has no effect on people's willingness to donate based on survey research.

00:11:40
Speaker 2: Wow, so people have been dying because of the six month rule even though it doesn't really do what it's supposed to do effectively.

00:11:48
Speaker 4: Yes, and it's not even a rule, it's a practice. It's all the transplant centers adhere to it, but it's actually not required. And you know, at the time that it was implement it made sense for all the reasons that we have discussed to use the few livers that became available in the best possible way, and it took a while for research to be performed and information to come in that would help inform whether that was the right policy. But it's really unclear that there wouldn't be unintended negative consequences if the six month rule were to be completely abandoned. So we really just don't know all the implications of stepping away from or completely abandoning the six month rule, and that's something that needs more, maybe more nuance and more information before we decide what the right policy should be.

00:12:47
Speaker 2: After the break, we'll hear from someone who is challenging the six month rule. The doctor who gave Jamie Imhoff a second chance at life.

00:12:57
Speaker 3: I am in the second chance business, and I believe even the ability of people to with multiple chances and multiple tries to get it.

00:13:05
Speaker 2: Right playing God will be right back.

00:13:14
Speaker 3: So when I started liver transplants, everybody knew the rules and the rules were agreed upon.

00:13:20
Speaker 2: This is Andrew Cameron. He's a liver transplant surgeon at Johns Hopkins University. He knows all about the eligibility rules for liver transplants. These aren't cut and dry legal rules, more like common practices.

00:13:36
Speaker 3: To get a liver transplant after excessive alcohol use, you needed to be sober or abstinent for six months. That was the rule, and we all accepted it.

00:13:49
Speaker 2: But these days Andrew is doing something almost unheard of in the transplant community. At his transplant center in Baltimore, he routinely, intentionally systematic breaks the six month rule. The first time he broke this rule, or bent it, as he says, was fifteen years ago. A patient showed up at Johns Hopkins' deathly ill with liver failure and a history of heavy alcohol use.

00:14:17
Speaker 3: And I remember our team going to take a look at him and saying oh, well, unfortunately this is an easy one. He's been drinking recently and so isn't eligible for a liver transplant. And we didn't think much more of it. But as we were leaving his room, his family grabbed us and said, you know you're not going anywhere. You know, we are demand that year reconsider. And it was pretty tough to argue with him. In fact, it was impossible to argue with them, and they made such a compelling case that as a team, we got together and considered whether we ought to bend the rules in this case, and we struggled with that decision, but as a team, we decided to bend the rules and we went ahead with a transplant.

00:15:02
Speaker 2: Andrew now runs a program at Johns Hopkins that treats people with cases similar to that patient. It was this program that helped Jamie get her new liver. Can you tell me a bit more about the research that you're doing with people with a history of heavy alcohol use and their ability to get transplants?

00:15:21
Speaker 3: Sure? So that there was an exciting New England Journal paper in which a group of liver transplant centers in France transplanted patients like the one I just described and in fact, a relatively low percentage of those patients when followed carefully, ever, went back to drinking. Now, at Johns Hopkins, we decided to start a very similar pilot program, and we've now transplanted about one hundred and thirty patients without a six month waiting period. And when we compare them to a group of patients that got transplanted that Hopkins at the same time that did have that six month waiting period, there was no hard data that suggested that that rule made a lot of sense.

00:16:05
Speaker 2: And so does that mean that any patient with alcohol related liver disease is given a transplant?

00:16:12
Speaker 3: Well, thanks for asking that question, because people hear some of these stories and say, oh, there's no rules, and there are rules. There need to be rules. They just not this past fail test, single question have you drank in the last six months. Rather, it is a look at factors that would meaningfully predict your performance post transplant, like do you have insight into your need to change your drinking? Do you have a social support network that will help you after your transplant? Are you willing to participate in programs that would help you stay abstinent after your transplant?

00:16:48
Speaker 2: So you talked about insight, and I just want to pick up on that, because how do you measure insight?

00:16:56
Speaker 3: It's tough, isn't it. So we all maybe have a feel for it. We all maybe can think of times in our own lives when something happened that was dramatic enough to cause behavior change. So for some folks that drink alcohol, that may be getting arrested or a dui. It may be a loved one leaving them a divorce for example, if they have expressed insight, if they have expressed a willingness to participate in programs that will allow them to have success after transplant, those are all favorable factors. You could imagine almost a group decision by multiple caregivers looking at multiple factors that predict performance after transplant and making as best we can, and it's not perfect, a logical, fair, humane decision about whether this person can get through a liver transplant and do well on the back end, if the answer is yes or maybe yes, we want to go ahead and give them the benefit of the doubt.

00:17:58
Speaker 2: That's great. So I want to talk about Jamie. You know, we heard Jamie's story and when she was taken into hospital, she was in a coma, and so in that situation, how would you determine her insight?

00:18:15
Speaker 3: It's tough, You're right. We didn't have the luxury of speaking with her, but we could talk to her family, so we couldn't hear it directly from her. But we knew that she had tried in the past to achieve sobriety and it had success in doing so. And we knew that she had some profound life stressors that had caused relapse. And that is a common story, and that is not a story that we cannot work with after transplant. So a lot of things spoke to Jamie's favor enough to give her the benefit of the doubt and say, this is a young person that we're not ready to give up on.

00:18:55
Speaker 2: And could you say a bit more about social support. So, for example, if someone doesn't have a partner, does that mean that they're kind of like go lower in the list?

00:19:03
Speaker 3: Or a social support is anyone who will help you after transplant with the things you need to do to take good care of your organ transplant. It could be a partner, It could be a family member, it could be a friend, it could be somebody from your AA group. It is somebody who was willing to help. The kind of help you're going to need after transplant is I don't feel well. You may have to take me into the hospital. I have an appointment tomorrow, I need to get my labs checked out. It can also be more than that. It can be I'm not feeling great, I'm worried. I'm going to have a relapse. Can you help me? It would take a person that couldn't identify a single soul to help them to get excluded from transplant. And even in those scenarios, we have advocates and social workers and transplant psychologists that work with our patients to try and mobilize somebody. So it's not really about saying yes or no. It's about saying, if we do this, how can we predict success afterwards? What can we do to help you be successful afterwards? And therefore get.

00:20:22
Speaker 2: To yes and yeah, that's great. So how in this program do you measure success?

00:20:30
Speaker 3: The gold standard for success after Oregon transplant, as measured and reported by the government is one year patient survival, and in the large group of patients that we quote took a chance on and bent the rules for one year later ninety four percent of them were alive and well, and that is as high or higher than any other indication for liver transplant that you could name. And then we measure how many of those folks relapse in terms of using alcohol, and probably twenty percent total have any relapse at all, as measured even by a single drink. And what we saw was that when we worked together, when we utilized extra resources to help them stay sober, even the small group of folks that return to drinking were able to ultimately return to abstinence and sobriety with extra help.

00:21:30
Speaker 2: So the people close to death store, they're high on the priority list, and then there are going to be other people on that list, for example, a young person with a congenital liver disease who might not be as close to death's door, but they're still waiting on that list for a liver transplant. Someone might ask you, why would someone like Jamie with a history of heavy alcohol use get that liver before their loved one who's also on the waiting list.

00:21:59
Speaker 3: These are very difficult questions. So far, society has decided that the people that can't wait need to go first, and that the people that can wait ought to wait until it's their turn. A better system would be if we had enough organs to go around for everybody. That's not the way it is now. So as you suggest somebody who's born with a congenital anomaly, we would of course say, oh, well, this isn't your fault. You need to go to the front of the line. In this case, we were looking at folks that had a claim to the front of the line, and we were saying, but you did it to yourself, you can't go to the head of line. That was the only case in which we excluded folks from the recognition that they needed an emergent surgery to save their life. And that's probably not a modern way of looking at something like alcohol used disorder. That's treating it more as a character flaw than a disease. You know, I think I have the advantage in this discussion of having met these people. They're real people, they are, they have families, they have they're they're indistinguishable from folks that are listening to this conversation. And it just occurred to all of us that a second chance is something we all probably are going to need at some point in our lives. And if the rules of the game are stacked against you or were never made clear or unfair. That's just that's just not fair play. And we have been able to see how well people can do when given a second chance. So I guess I would ask people to withhold judgment maybe, and and imagine if it was your brother, if it was your your partner, if it was your kid that needed a life saving transplant, if there was a way for doctors to save your kid's life, and somebody tried to say we could, but we're just not going to. You wouldn't stay and for it. You wouldn't stand for it, and we're not standing for it either.

00:24:04
Speaker 2: Okay, So yeah, you've convinced me. And I'm just wondering how your approach has been received by other transplant centers. Have you experienced any resistance there?

00:24:17
Speaker 3: When we look at how widely this new approach to transplant has been adopted in the United States, the answer is disappointing. There are probably one hundred and fifty liver transplant centers in the United States, and I would say somewhere between a third and a half have done one of these transplants without a six month waiting period. And I think some of the reasons are is that, ah, these patients are heavy lifting. It takes extra resources to evaluate them before transplant and to take care of them after transplant. And I think there is also safety in traditional rules. It is just easier to say, I'm not going to get into all those controversies. I play by the rules. Six months is a rule. I understand. I'm on safe ground.

00:25:12
Speaker 2: And do you think that there is anything that might make clinics wary of doing these kinds of transfers.

00:25:21
Speaker 3: I think the barriers are stigma. I think alcohol occupies a very special place in our society which is difficult to unpack. This patient drank too much. They did it to themselves. That that's sort of an old fashioned, historic way at looking at alcohol use, which I think our country has not moved on from. It's interesting Europe rapidly adopted this new system or criteria for who should get a liver transplant for alcohol use, perhaps a more open minded or liberal approach to the problem. The United States did not. It's still coming.

00:26:00
Speaker 2: Andrew hopes that transplant centers across the US will see the results of his pilot program and rethink the six month ban. His patient Jamie Imhoff is working towards the same goal.

00:26:13
Speaker 1: I hope to break the stigma that such individuals are worth saving when a lot of programs deem them unsavable.

00:26:24
Speaker 2: Jamie spends a lot of her time these days raising awareness about the six month ban through social media campaigns and public events.

00:26:33
Speaker 1: It's been more than.

00:26:33
Speaker 2: A year since the day she collapsed. She's grateful to be alive, and she doesn't take it for granted.

00:26:40
Speaker 1: I feel my duty is to make sure that overall, not just physically but mentally, I'm as healthy as I can be for the person who gave me this new life.

00:26:51
Speaker 2: She says. One of the things that helps us stay healthy has been letting go of the sense of shame she used to feel about her drinking.

00:26:59
Speaker 1: If you have guilt, shame, resentment, these are the things that we'll make you. We'll drive you back to drinking. You're going to fail the transplant in itself, and you're going to fail the donor.

00:27:09
Speaker 2: Jamie is still sober, and she plans to stay that way. She thinks of her sobriety as a gift that's just as life changing is her liver.

00:27:19
Speaker 1: So when I wake up in the morning now I don't feel sick. I'm able to get up right away. For example, this morning went up and I already walked two miles today and got my coffee, and so I can get up and look at the trees blooming, or actually I can even smell the fresh air. Those are a lot of the side effects that you lose in full on alcoholism. So sobriety overall is just one hundred times better.

00:27:46
Speaker 2: Next week, I'm playing God. What if there was an eBay for kidneys? We'll hear from a transplant recipient who thinks we should legalize the sale of organs in the US and even provide compensation to incentivize living organ donation. But is it ever ethical to pay someone for a body part? Thanks so much to our guests Jamie Imhoff and Andrew Cameron. Playing God is a co production of Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. Emily Vaughan is our lead producer. This episode was also produced by Sophie Crane and Lucy Sullivan. Our editors are Karen Schakerjee and Kate Parkinson Morgan. Theme music and mixing by Echo Mountain Engineering. Support from Sarah Brugere and Amanda Kaiwang. Show art by Sean Karney, fact checking by David jar and Arthur Gompertz. Our executive producer is Justine Lang at the Johns Hopkins Berman Institute of Bioethics. Our executive producers are Jeffrey Kahan and Anna Mastriani, working with Amelia Hood. Funding provided by the Greenwall Foundation. I'm Laurena Rora Hutchinson. Come back next week for more Playing God. As you've heard through the series, I'm the director of the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. At the Ideas Lab, we are exploring new innovative ways of telling stories about the intersection of ethics, science, medicine, and public health. As well as podcasts, we do screenwriting, films, and immersive experiences. To get involved, visit Bioethics dot Jhu dot edu, Forward Slash Ideas Lab