The Ethics of Living Organ Donation

Transplant Grand Rounds host

Hi, everyone. Welcome to Transplant Grand Rounds. This is a unique Transplant Grand Rounds. It's done in conjunction with the Emory Center of Ethics. And we're really excited to have this collaborative meeting. And thanks very much for Stephen Pastan, who brought this to my attention. And special thanks to Dr. Gerard Vong of the Emory Center for Ethics, who really helped organize this. And he's going to introduce our two exciting speakers for today.

Gerard Vong

Great. So welcome, everyone. I'm really honored to introduce Martha Gershun and John Lantos today to this sort of special collaborative event between, that's co-organized between the Division of Renal Medicine, the Emory Transplant Center, and the Emory Center for Ethics, where I direct the Master of Arts in Bioethics degree program. So I'm super excited because it's a really great topic and really great speakers. And I'm going to introduce them. Dr. John Lantos is the Glasnapp Family Foundation Endowed Chair in Bioethics, Professor of Pediatrics at Missouri-Kansas City School of Medicine, and he also directs Children's Mercy Hospital's Bioethics Center. And his recent books include The Ethics of... Shared Decision Making, published by Oxford University Press just last year, and Ethics Rounds, a case book published by the American Academy of Pediatrics. Martha Gershun is a nonprofit consultant, writer, and community volunteer. Previously, she was an executive director of the Jackson County Court Appointed Special Advocates, and she holds an MBA from Harvard Business School.

Gerard Vong

Crucially for today's discussion, in 2018, she did the very commendable thing of donating a kidney at the Mayo Clinic to a woman she read about in the newspaper. Together, Martha and John wrote, Kidney to Share, A Living Donor's Experience, recently published by Cornell University Press. And today they're gonna be discussing Martha's experience about volunteering to donate a kidney to someone she didn't know prior and discussing the unexpected issues that arose and the ethical issues around that. So I'm really, really, really looking forward to this. Without further ado, Martha and John, take it away.

Dr. John Lantos

Thank you. And thanks so much for having us. This book was a lot of fun to write. Martha and I are old friends who knew each other well before Martha made the decision to donate. And as she went through the process, we had a number of interesting discussions about both the ethics, but also some of the economics, the politics, the bureaucracy. And the more we talked, the more we thought this might be of value to others. And those conversations led to this book. And the book sort of follows the conversations. And this presentation will follow a similar format where I am the bioethicist, and Martha came to me frequently and would ask, like, why are these things happening? And I'd give a little background, a little history, a little bit of legal or ethical stuff. And that's sort of how we're going to do this today.

Dr. John Lantos

So as background, I'm sure most people working in transplant centers know there's lots of people waiting for kidneys, about 100,000 now in the United States. about a dozen die every day on the waiting list. And we know that the best outcomes are with living donors, not with cadaveric donors. Histocompatibility can generally be better. The kidneys are healthy because the donors are screened carefully before they're permitted to donate. The thing is all arranged, so it's not emergency and scheduled at a time that can maximize outcome. very few people choose to donate as living donors. This was for 2021, about a little over 17,000 kidney donors. Two-thirds were deceased donors. Of the living donors, about a third of total donors, most were biologic relatives or spouses or life partners or paired exchanges, which we'll talk about. or basically somebody donating to a loved one and then put through a paired or chain exchanges. So a very small percentage of the total, maybe 10% were unrelated living donors.

Dr. John Lantos

And people have begun to try to find donors through both traditional media and social media. the american transplant foundation will coach you on how to crowdsource for an organ but even the lay press like good housekeeping shown here on the left has articles about miracles on facebook where you go on facebook plead for a donor and sometimes find one who will step forward part of the reason why living donors uh living donation has not been popular comes from the history of organ transplantation and particular qualms that transplant surgeons used to have i think many have gotten over these qualms but in the early days of transplant surgeons were quite ambivalent about accepting any living donor even a close relative and Renée C. Fox and Judith P. Swazey who are medical sociologists and I've written some of the best books about the sociology of liver transplant. I document this in their book, Spare Parts, where they talk to surgeons who said, I feel very uncomfortable wounding an individual who's not sick. Surgery is a dangerous sport. We always try to do no harm and taking someone who

Dr. John Lantos

we would harm by doing an operation on in order to benefit somebody else seems to fly against many fundamental principles of medical ethics. Eventually, they started taking donations from living relatives, which they judged, according to Fox and Swayze, to be healthy altruism derived from genuine moral concern. But the idea that somebody would voluntarily put themselves in harm's way to donate to a person they didn't know, well, it raised questions about the motivations of people donates to strangers. And there was much discussion at transplant centers about the need for psychiatric evaluation to make sure that somebody who steps forward and wants to give a kidney to a stranger is not mentally ill. In Canada, they

Dr. John Lantos

had to decide policy about stranger donors, or as they called them, altruistically motivated individuals who want to donate a kidney anonymously to a stranger. So they did a big survey of people who stepped forward to do this. It was published in the American Journal of Transplantation about 20 years ago. And to their surprise, contrary to the medical community's fears, they found that there were a significant number of psychologically stable people who just wanted to help. somebody else. And what we've seen over the last 20 years since this happened, last 30 years perhaps altogether, has been a gradual shift in policies of transplant centers from a complete ban on stranger donors to now both encouragement and even facilitation of this. There are psychological benefits people have pointed out to being a living donor. And I'm going to skip that one for now and we'll move on to Martha's story.

Martha Gershun

Thanks, John. Well, this is me and my kidney recipient. She's the pretty blonde one. My story as a living kidney donor is pretty typical. I took some baby steps earlier on, 20 years before I had registered with a bone marrow donor registry. In fact, I had actually matched to donate bone marrow to a six-year-old little girl with aplastic anemia. She died before that procedure was possible. But I had already had a little bit of taste about what it might feel like for my body, maybe, to save someone else's life. I've also spent most of my career, after the corporate part, in nonprofit management and worked alongside all kinds of heroes, people who do all kinds of things with their time and their money and their bodies to help other people. I worked with foster kids and in particular people who foster and adopt children from the system, often special needs children or children who've faced trauma. Those are heroes, people who do things that change their lives irreparably, both probably for better and for worse. So the notion of doing something to help others was, well ingrained it's also true that i have a family story that put me close to the idea of kidney donation my cousin ann goldstein in omaha nebraska needed a kidney in 2002 she was a pkd patient and the immediate family members uh were not an option as you know that's an inherited disease uh and at that time i thought about donating this was a beloved family member I wasn't even a blood type match. My own life was very busy. I was running a big agency. My husband's life was busy. We were raising two kids at home. In some ways, I often thought it was best that I didn't match, but it would have been lovely to be the one to save Anne's life. As it turned out, her best friend was a, not perfect, but was a match. And there was a living kidney transplant procedure and my cousin lived for another nine years. So as a family member, I knew precisely what it meant to benefit from somebody else's generosity. So when I read about Deb in the Kansas City Jewish Chronicle, I thought I could do this. Robin Wagner- The thought was that fleeting and that simple and that store I had recently retired so I had time our kids have left home so wasn't taking care of anybody else, we were financially secure. Robin Wagner- We could afford whatever this would cost and I felt pretty strong and healthy and I was only 61 and I thought I guess I was 60 at that time 61 by the donation, I can do this. Robin Wagner- When I look. back, it's been three years now, and the process from start to finish took nine months, exactly nine months from the day I first called the Mayo Clinic to the day Deb and I had our transplant surgery. The physical, surgical, medical aspects were really so easy and so, I'm not going to say non-invasive, but so non-permanent, so not difficult to manage. that I'm always surprised how horrified people are by this. Oh, surgery. Oh, general anesthesia. Oh, they're going to cut your abdomen open. Well, as someone who pushed two kids out with a failed epidural, I'm telling you, there are a whole lot of things we do with our bodies all the time

Martha Gershun

that cost much greater pain and effort and trouble than this. It's really, from a surgical perspective, no more difficult than when I have my gallbladder removed or people who have a C-section or an appendectomy. There's some long-term issues about living with one kidney, but the risks and the trauma around the surgery seem very built up because this is a completely voluntary procedure. On the other hand, the bureaucratic hassles, the logistic hassles, the financial costs, I think are much under-discussed. And in fact, that's the reason that John and I decided to write this book. I have a Harvard MBA and a long experience working with customers, working with service ops, and this is a ridiculous process. And I felt like as a living kidney donor with some academic and experiential knowledge to lend, and a very good friend who's a bioethicist and a writer, we might be able to shed some light on this. I'm going to tell you a couple of stories. There are a lot more in the book, which of course you should buy, but I'll tell you a couple of the most interesting ones. I disclosed on the initial intake form on the Mayo Clinic website, it's the very first thing you do before you get to talk to anybody but a receptionist, two things that caused big red flags. And a lot of trouble and a huge clear fluffle, but in the end didn't amount to anything, but could have set me back. I could see where other people might have dropped out at that point. The first is that I said, have you ever seen a mental health professional? So ever is a big word, but the fact is I have an ongoing relationship with a wonderful psychologist here in Kansas City, who I see now and then when I have a big question, should I retire? What should I say to my sister? the usual kinds of life issues. So I said yes. That was a huge red flag. Could I be mentally ill? Could I be doing this for the wrong reasons? If the surgery went badly for my recipient, would I spiral into depression and suicide? And the transplant center demanded that my therapist fax my entire record up to the clinic before they would even test my blood for histocompatibility match. My therapist is a pretty strong advocate herself, said no, that that record was personal, that if we sent it up there, who knew? I mean, I get HIPAA, I get Chinese wall, but could it ever be merged with my recipient's record? What were the risks? It was nobody else's business. And what I wanted to say about my parents, now long deceased, didn't belong in anybody else's file. So instead, she wrote a one-page summary of

Martha Gershun

some of our conversations that I had no clinical diagnosis that she thought I was perfectly fit to do this. And in fact, thought it might be a great idea. And they let it go with that. But you have to ask yourself, is that because I am a little over middle aged, white, affluent, highly educated, former professional person who advocated for herself? What if I were low income? What if I were black? What if? My therapists were not so sophisticated. Is this the point at which I would have bailed? The other story's a little more fun. I disclosed that I occasionally smoke recreational cannabis. In Colorado, on vacation, where it's legal, but they don't ask you for the details. They just say, have you ever used recreational drugs? Again, a big question. It's kind of a big difference between shooting up heroin and... having a smoke now and then with your husband in Colorado. But I said, yes. Once again, would I agree to seeing a substance abuse counselor at my medical evaluation if I turned out to be a match? I said, sure. I didn't care. I've worked with substance abuse counselors most of my life in the foster care system. They're nice people. Well, it turns out that they're also in short supply. And getting that one appointment of the 25 appointments I had to have to be evaluated was going to delay our evaluation by a month, putting my recipient at greater risk, or I was going to have to fly to the Mayo Clinic a second time at my own expense, my own travel, to get that one appointment done. Wouldn't do it by telehealth, couldn't do it locally and send my records up, couldn't do a pee test, couldn't do a hair test, had to go, had to do this. Elizabeth Kuzina- asterisk

Dr. John Lantos

i've heard that since coven a little more of this is being done by

Martha Gershun

telehealth and I hope that's true, but the capacity constraint about substance abuse counselors should not be slowing down organ transplantation well once again I kind of pulled the privilege card. And when I went to the clinic for my medical evaluation, I also talked to a social worker, talked to a financial counselor. But when I literally had my kidneys and my health evaluated for appropriate transplantation, I advocated very aggressively with everyone I talked to and said, if you all can't get me an appointment while I'm here, it must not be very important. Why are we doing this? What's the holdup? And in fact, my advocacy was sufficiently successful that they dropped that requirement. And they said, she doesn't look like a drug addict to us. Don't think it's going to be a problem. But you have to ask, what if I were black? What if I were Latino? What if I didn't speak English as a first language? What if I weren't an articulate, aggressive woman determined to do this? What if I were just somebody trying to save the life of a brother or sister doing the best I could under difficult circumstances? So as you all know, kidney disease is extremely prevalent in communities of color. Black people and brown people are significantly more likely to need a kidney transplant. And yet these barriers that would scare off an unsophisticated donor prevail. i didn't drop out i fought through i was determined to do this but in all honesty when i when i look in my heart this this was a hobby act for me this was a volunteer act i was not trying to save the life of a mother of a child of a sibling of a spouse and putting up barriers that would prevent people from saving the lives of their relatives never mind their ability to be a volunteer Seems like a terrible idea to me. It's also true that we need more living donors. Every time we do a transplant this way, we let people on the list move up. We make the limited pool of cadaveric organs go a little bit further. So John and I are gonna talk some more about some of these barriers and you should read the book, John.

Dr. John Lantos

So in the book, we talk a little bit about various ways to increase the supply of organs, talk about opt out versus opt in. I'm going to talk about each of these a little bit. We talk a bit about markets, although that's been one of the things that's generated the most interest as we've talked about the book. And mostly, though, we end up talking about some of the issues that Martha faced, which I see and we see as sort of a remnant of this distrust, the suspicion of the motivations of altruistic or stranger donors. So

Dr. John Lantos

increasing cadaveric donation, opt out versus opt in. Some countries have decided, unlike the United States, that when you get your driver's license or want to check about being an organ donor, you don't check the box that says I want to be a donor. You're presumed to be a donor unless you check the box that says I don't want to be a donor. Spain and Croatia have been the two countries that have implemented this. And you can see in the graph there also the two countries that have the highest rate of donation of cadaveric donors. Other countries in Europe are considering this. And it's an option for the United States, although given the individualistic culture and deep distrust of authority in the medical profession, as we've seen with regard to COVID vaccines. I wonder if this would be as successful in the United States. But it could be tried, as many things are in the US, on a state-by-state basis. And so we could use the laboratory of the states to see whether this could increase rates of cadaveric donation.

Dr. John Lantos

One of the major innovations to increase the supply of organs for donation is what have been called paired exchanges or chain exchanges. Interestingly, they were developed by a health economist, Al Roth, who teaches at Stanford, who really is a proponent of well-regulated markets for organs, realized that that was a non-starter given huge suspicion about selling organs, which we'll get to. Larry Paxton, Later, but he came up with this idea, instead, and said, might be more politically acceptable might be more culturally acceptable. Larry Paxton, We know it's really a market to barter market but we're not going to tell anybody. Larry Paxton, And you know here's how it works, you want to give to your loved ones somebody else wants to give to their loved one you're not a match, but you make a deal. Larry Paxton, i'll give to your loved one you give to mine, we have a parent exchange and once you do it with two people, you can start to do it with.

Dr. John Lantos

almost any number of people. The largest reported has been 30 kidneys, 60 lives, where donor gives to recipient one, donor one to two, two to three, et cetera, until the loop is closed at the end. In some cases, the loop can't be closed. The logistical problems of these are enormous. And for those situations, Roth and others have proposed giving donor one a voucher. so that they go to the head of the line for the next altruistic kidney donation or get into the next chain. And the more you start to tweak these approaches, the more clear it becomes that this is really a market. It's a market with no cash exchange. Although you could imagine the voucher being exchanged for cash or for other compensation and questions then come up about whether this would, A, increase the overall supply of organs, and B, decrease the quality if people could begin to donate for cash.

Dr. John Lantos

There are big questions, though, about whether markets would, in fact, increase the supply, thereby save lives, without decreasing the quality of organ donation or leading to exploitation. And we know that there are many body parts that can be sold. Here's a partial list. We also know that there are many dangerous things that people do in exchange for money. And this is one of the most powerful ethical arguments in favor of markets for kidneys. It's not so different from other things that we allow people to do. Certainly there are dangerous jobs like working in logging or an airplane pilot or working in the oil and gas industry. And certainly professional sports are an example where people take enormous risks. Arguments against markets are equally well known. There is tremendous concern about coercion and exploitation. These are some excerpts from the Stanford Encyclopedia of Philosophy. We talked about some of the concerns that might arise if we allowed people to sell their kidneys. The Nuffield Council of Bioethics had a paper about different ways to move along the ladder of intervention, as they called it, from nudging to coercion with do nothing or simply monitor the situation at the bottom and eliminate choice completely. at the top, and then about five or six different levels in the middle that have to do with ways of nudging or creating choice architecture. An example of this would be the opt-out versus opt-in for cadaveric donors. And that's about where we draw the line now in the United States. We provide information, we enable choice, we guide choice in some cases through changing the default setting. But we have not yet started to use financial or other incentives or disincentives to nudge people towards being more willing to donate their kidneys.

Dr. John Lantos

Back to you, Martha.

Martha Gershun

Well, spoiler alert, our effort was successful, though not without some hiccups along the way. There was a short-term issue that I might have mild hypertension that was successfully medicated within a couple of weeks.

Martha Gershun

There was a much more serious problem. The first time I went up to the Mayo Clinic to donate to Deb, she got too sick. We had waited too long. And the night pre-surgery, she was in the hospital being prepped. I was... back in the hotel drinking a laxative and scrubbing with antibiotic soap. I got a call about 9 PM that the surgery was off, that she had retained so much water that there were shadows on her lungs, unclear if that might be infection, unclear what happens then with immunosuppressants, and we were canceling the surgery. This was another time when being a donor was a very problematic thing. Being a donor is a pretty weird place to be in a medical system. You are a patient. but you're also part of the supply chain, just like a plate or a suture system thingy, whatever you all work with, anything you might take off a shelf. It's just that in this case, the relevant part is inside a living, breathing, warm human being. And during the week or so that the Mayo Clinic miraculously got Deb so much better that she was able to survive the surgery, they kind of lost track of me.

Martha Gershun

I got a phone call, can you be here in the morning for tests? We're going to go again. I said, I'm in Kansas City. I'd have to drive all night. They said, what do you mean you're in Kansas City? I said, I live in Kansas City. It's been on my chart for nine months. You're not here? No, I'm not there. I'm not on a shelf. Part of our advocacy efforts involve thinking about this very specialized place that living donors have in the system. We are patients. We are part of the supply chain. We must be uniquely managed. If you're managed as one or the other, it never quite works. As it turned out, the surgery was able to be postponed again on my behalf so that I could drive to the clinic during daylight hours. I thought that was smart. I was afraid if I drove at night, we might end up as a cadaveric donor. I'm not a good night driver.

Martha Gershun

And in fact, it was successful. And as many of you in this business know, the part that you can't see, the best part of the picture of Deb and me in the hospital is the foot of the bed where the bag is filling with golden urine because my kidney worked almost instantly and Deb got a lot better really fast. And in fact, I just got a note from her today. Do you want to talk with me to a Jewish group in Florida by Zoom in February? I'm introducing you to these people. You are the woman who saved my life. And I have to tell you, when somebody says that, it makes everything worthwhile. Nonetheless, my ability to do this was based on my effort, my smarts, my privilege, my loving husband, my money in the bank, my working car, and it shouldn't have to be that way.

Dr. John Lantos

So in the book, we talk about some of the lessons that we learned together, that Mark learned, that we think might help other people working in this business, basically about lowering barriers to donation. And we talk about three different kinds of barriers, the medical ones, the psychosocial ones, and the financial one. The medical ones are perhaps the easiest to understand and defend in every transplant program. Going back to these qualms that surgeons have always had, and I think rightfully have, about harming a perfectly healthy person to benefit another, surgery is always some sort of harm, but the goal of most screening programs is to minimize that harm by making sure that the donor is as healthy as possible. before going into this. But that raises some interesting questions

Dr. John Lantos

on the margins. During Martha's evaluation, she had borderline elevated blood pressure. Would that have disqualified her to be a donor? And whose choice should that be, the surgeon's or the potential donor? Should the threshold be different if the donation is to a loved one versus a donation to a stranger? She had borderline elevated blood glucose levels on a glucose tolerance test. Turned out those went away when they repeated the test. Should that have been a disqualification? So while the medical considerations seem straightforward, there are always sort of potentially tough decisions at the margins. At Mayo, like at most places, ultimately the decision about whether to accept a donor belongs to the team. And there was one stress-filled day that we write about in the book where Martha knew the evaluation team was meeting and was waiting for the verdict about whether they would approve her to be a donor. The psychosocial barriers would go into a great deal, and many of them seem to be a remnant of this view that Anybody who'd want to donate to a stranger is psychiatrically suspect. And so Martha's

Dr. John Lantos

requirement that she speak to a substance abuse counselor or fax all of her mental health records

Dr. John Lantos

illustrate this longstanding and deep distrust that may be ethically defensible. If it turned out that through psychological evaluation, people were able to effectively screen out people whose motivations for donation were suspect or psychopathological. But it turns out there's no good papers showing that these sorts of evaluations work. People have worried about it. Martha alluded to it earlier in the talk. worried that somebody might be so depressed if a transplant didn't work that they might kill themselves. There are two case reports that we found of suicides after donation. Although interestingly, in both cases, those donors had been extensively evaluated pre-transplant by a psychiatrist and deemed psychologically healthy enough to donate. So it at least raises questions about whether a psychiatric evaluation is effective, even if you think it's morally appropriate. Whether it's morally appropriate is, I think, a deeper question about whether somebody should be able to judge for themselves whether they want to be a donor. The final sort of barrier that we talk about some is financial. It turns out most places don't cover a lot of the out-of-pocket expenses for donation. the book we talk about how Martha and her husband, Don, ended up spending about $5,000 out of pocket, counting things like lost work, but also travel from Kansas City to Minnesota, hotels, meals, cat sitters while they were gone, all sorts of expenses that ended up making them come out $5,000 poorer.

Dr. John Lantos

for the decision to try to save somebody else's life. All of these things have real-world consequences

Dr. John Lantos

and may increase health disparities. This was a study from the Washington Hospital Center looking at how many of the people who got in the pipeline to be a donor ended up donating. What they found was only about 15% made it through. Some were medical rule-outs, some were Donor opt outs and we don't know for these donor opt out how many disappeared, because the process was to owners were to cost too high, interestingly, there were twice as many.

Dr. John Lantos

Caucasians who ended up donating that African American so whatever is happening in this process, it seems to lead to a racial disparity, even if that's not the intention. Now, the government today does offer some limited help to donors. This is a website from the National Living Donor Assistance Center part of CMS. It's a means-tested program, and oddly, it's based on the recipient's household income. There seems to be an implicit assumption that if the recipient is rich enough, perhaps they will cover the costs, the out-of-pocket costs. William Newburry, M.D.:: Of the donor that in fact it happened in in martha's case did have was able to cover some of these out of pocket expenses, but not everybody can count on that and the idea that it's means tested seems weirdly. William Newburry, M.D.:: punitive. William Newburry, M.D.:: And doesn't really get at the core issues there have been recent state proposals to increase government support. William Newburry, M.D.:: For. living donors. This is a bill in the New York legislature, New York State Living Donor Support Act, which would fully compensate New Yorkers for the expenses associated with living donation and offer health insurance to anybody who donates. Art Kaplan just a couple of weeks ago came out with a commentary supporting this bill and saying that we need to increase support for living donors. because they are heroes, and we should treat them that way. Nonprofit agencies exist to help fill this gap. But like so many things in the US health care system, it's a patchwork. Different states have different policies. Nonprofits step in. But why not make this simply a matter of policy, since taxpayer dollars are paying for the treatment of end-stage renal disease. Taxpayer dollars are paying for transplants. encouraging living donation would save the taxpayers money, it seems like a

Dr. John Lantos

policy that should garner lots of support. This is just another example of a not-for-profit that's trying to increase kidney transplants, decrease financial obstacles, and fund research to figure out which programs actually work the best. So again, this is December 7. just a month ago. So there does seem to be a lot of stuff happening recently out of recognition of this problem that may in fact lead to both greater support for donors and maybe even liberalization and pilot projects to look at whether well-regulated markets could increase donation and improve outcomes. Do we end up making a proposal very similar to the one that Art Kaplan made. We frame it a little bit differently. We don't talk about heroes. We just say treat donors like donors. And by that, we mean that hospitals have many programs in place to reward people, to honor people who give money to the hospital. They have halls of benefactors. They have development offices that will meet potential donors and facilitate their care,

Mixed speaker fragments

they are honored

Dr. John Lantos

for their financial contribution. A similar approach to organ donors might go a long way towards encouraging people to donate, increase the supply of organs, and save lots of lives. So with that, this is one other paper. James Rattling Leafs, Again, advocating these sorts of programs you shouldn't have to lose money risk debt to be a hero so thanks so much for having us even virtually and for coming out today we'd be happy to take questions comments. James Rattling Leafs, or engage in some discussion.

Transplant Grand Rounds host

Fantastic. Thank you so much, Ms. Gershun and Dr. Lantos. That was an extraordinary talk. I know we're going to have lots of questions. If people could use either the raise hand function and I'll unmute you or enter your question in the chat function. So just to begin, I had a question for both of you. So the risks of mortality with kidney donation are fairly low. Most people would say it's one to two in 10,000 or so. For other living donors, such as liver or even lungs, which are much more rare, the risk is considerably higher, although still fairly low. So most people would say for living liver donation, it's one in 200 to one in 300. So first question for you, Ms. Gershun, was there a certain level if they had told you that the risk was 1% or even half a percent of risk of dying, how would that have impacted your decision to give to a stranger at that point? And then for Dr. Lantos, a similar question, as we think of especially altruistic donation, where it's really extraordinary gifts making on behalf of a total stranger rather than a family member, a close friend, how should we think as clinicians in terms of risk? of what's acceptable to subject a sort of heroic altruistic donor, unlike a normal living donor that may be willing to take more risks to benefit someone who is a close intimate contact with them. So Ms. Gershun. It's

Martha Gershun

a great question. And I think that the decision making around this from a donor's perspective is two tiered. The first is, when do you throw your hat in the ring? Lori Foley, And when you throw your hat in the ring you aren't saying i'm going to donate, you were saying, please test my blood. Lori Foley, To see if i'm a match to see if you will evaluate me medically to possibly consider donating it's very far downstream. Lori Foley, The leader decision is yes, your blood match, yes, your history compatibility match you get those two pieces of information sequentially yes you've passed the medical psyche now do you want to donate so for me. Once I got there, in fact, the day they called and said, you are a perfect histocompatible match for this complete stranger you have never met. I'd have done it if you told me it was 50-50. I mean, I was so all in. I was so motivated. My endorphin levels were so high. I was there. But step back, back, back, back, back. The day I threw my hat in the ring, which for me meant dialing in 1-800 phone number I read about in the newspaper. I don't think I'd have done it if it had been presented as a dangerous procedure. And in my case, I don't think I would have done it if it had been anything else but a kidney, because a kidney was my family story. If my cousin had received half a liver, maybe I'd have been in for livers. But I think it's really, really important that people understand that you make decisions all along this continuum. The closer you get, the more buy-in you have.

Transplant Grand Rounds host

That's a fascinating perspective. And Dr. Lantos, do you wish to

Dr. John Lantos

comment? The question of absolute risk levels is fascinating in part because of what you said as you framed the question. We allow a higher level of risk for a liver donor. And for a kidney donor. Now, why should those thresholds be different if absolute risk is driving the equation? If Martha's blood pressure had remained marginally high, her risk still wouldn't have been as high as a living liver donor, and yet she would have been rejected.

Dr. John Lantos

I'm not a surgeon, but my hunch would be that for a surgeon to lose a living donor would have to be one of the worst experiences you could imagine. I mean, to have been the person who operated on a perfectly healthy person and have them die as a result. And therefore, I do think it's appropriate to let the surgeon as an individual and then the team set these thresholds But the net result is there's gonna be some arbitrariness

Martha Gershun

in

Dr. John Lantos

where they get set. And I don't think there's an absolute way to do that. Although I think probably the risk of liver or lung is probably an upper limit of what most surgeons and society would be willing to tolerate.

Transplant Grand Rounds host

Our next question is gonna be Dr. Joe Magliocca, who's the Surgical Director of Liver Transplantation here.

Joseph F. Magliocca

hi and thank you for that great talk i really enjoy hearing stories from a donor perspective it's it's wonderful uh but actually it's funny you hit it right on the head what i was going to bring up you know um in living donation in kidney and in liver there is a real risk of death and there is a risk of morbidity um for example in in martha's situation You know, the things that we worry about are the elevated risk of hypertension in the future. There's a high risk of developing kidney failure in the future. It's low. But I think we really need to even consider the medical teams, the effect on the medical team. I know people personally who have had donors die. And it's devastating. And it can destroy a career. It destroys the morale of the team. It is very difficult. And I think that can't be discounted. I would love to just say, hey, come on, the door's open. We can do lots of donors. But there are significant, I think, unforeseen consequences that can arise based on those issues that Maybe we don't see things from your perspective. At the same time, our perspective is quite different also. And if I lost a donor, I would be devastated. I'm not sure how I would handle that.

Martha Gershun

I'll give you one other family perspective. My family had a successful kidney transplant last week. I don't know why. Kidneys seemed to find me. But our niece was approved to donate to her mother, who had been on dialysis. For two years, the mother is the daughter of a Holocaust survivor. So you can imagine this family's story. Rhode Island, the hospital, the medical center there turned down my niece to donate. But Columbia Presbyterian, because they were more sophisticated, because they're bigger risk takers, because they're in New York City, said yes. It was successful. So far, so good. Everybody's looking good. I can tell you that the trauma to my niece if she had not been allowed to donate. though it didn't impact the surgeon and it didn't impact the medical team, would have been profound. And I know that whatever risk she took to save her mother's life in balance was better for her. So, you know, there's always this, right? There's the risk of what we do, and then there's the risk of what we don't do. If Afat's mother had died because she had not been allowed to donate, that family never would have been okay.

Transplant Grand Rounds host

much our next uh question is from dr ron parsons one of our kidney transplant surgeons

Ronald Parsons

thank you both very much that was a really outstanding uh summary and it's always really special to hear about the uh maturation of the donor process and uh it was really a special story i guess you know i have a lot of thoughts on this and i don't want to get into all of them here but A couple of things. I think if donor compensation were to ever become a reality, I think number one, the push for this would have to come from

Ronald Parsons

the donor community and kind of society itself. I think if surgeons were out in front of this, then it would appear disingenuous and unfortunately wouldn't go anywhere. I think that number one. Number two, I think if this know the idea of markets i think just makes at least me personally kind of cringe at the idea but something where there's federal oversight something highly regulated where it's actually the government is it's not a market but the government is actually compensating donors and the transplant centers are involved with the are involved with the selection and you know we would be under even more scrutiny than we are now which is hard to believe that that would be possible, but that's, I think what would be necessary for this to not appear as a coercive transaction, but as a appropriate compensation for a huge risk like Joe mentioned, but something that clearly is of tremendous benefit to the patients.

Ronald Parsons

So I guess I just wanted to do your thoughts about the idea of not using the term markets and And actually, one other quick plug. The ASTS is trying to get a living donor center of excellence where the health care providers provide a certain level of compensation. And I think Emory still has not embraced that. And I'm hoping that we do that. So anyway, just one more plug for that.

Dr. John Lantos

I guess through this process, I've changed my views a little bit and become a little more accepting of the idea of a well regulated market. Part of this was through discussions with Martha, who has an MBA and is all about markets and autonomy and people's right to make decisions about what to do with their own bodies. But part of it was also having the privilege of giving this talk at Stanford with Al Roth in the audience and talk he talked about sort of his work around the world, first to get paired exchanges and chain exchanges and now voucher programs in place, and who described his vision for what a pilot project of a well-regulated market would look like. I mean, it would start in one specific place. There would be a set price, say, pick a number of $15,000. It would come from the government. the donor could use it to cover all expenses. But if there was some leftover, they could keep that. And Roth's idea was try it for three years or five years and see whether the fears of market detractors come true or whether the hopes of market proponents come true. Would it have a huge

Dr. John Lantos

effect on the number of people who actually come forward to donate? We don't know. I mean, people who believe in markets take it as a given. You pour in more money, of course, people are going to do that. I spent 20 years at University of Chicago. I know all about how these people think. They're a little weird, and I agree with you. They give me some qualms. But it might work, or it might not. And the fears are that people who donated would have much more regret, many more psychological problems, and perhaps many more people with chronic, they might lie on their intake forms in order to get the money, which would lead to worse outcomes for recipients. But the only way to know would be to try it and study it under careful conditions that would allow outcomes to be determined. So I guess I've come around to the view that that would be a good study to do.

Martha Gershun

When we talk about markets, I think that too is a continuum, and you've just sort of entered that middle space, which is that the government would purchase, would allocate, maybe it looks like UNOS for living organs. I think a lot of people, when they hear the word market, they think of like a crazy free-for-all, like rich people buy organs from poor people at whatever price they can bid up on eBay, which I don't think really anyone's advocating for, but the word market can conjure that up. And then there's... On the other end of the continuum, which I think is the place really that we should all be able to agree, everyone, you don't even have to go to the Harvard Business School or touch the University of Chicago to believe this, donating should be financially neutral to the organ donor. As John mentioned, it was $5,000 out of pocket for Donna Mead. That did not even count the 16 days my executive husband spent off work facilitating my opportunity to volunteer. Why should a donor who's already giving money, or in this case in Oregon, have to pay for the privilege? And it makes it almost impossible for low income people to donate. So if we want to think about things starting small and growing, what if we follow these legislative tracks to make donation financially neutral? After all, every living kidney transplant, this isn't true for livers, but every living kidney transplant saves Medicare about $150,000 over the life of the person. There's a lot of money in the system to make this a win-win. Start with financially neutral, move to government regulation of a sensible compensation system for organ donors, and let's never quite get to the crazy free-for-all.

Transplant Grand Rounds host

Our next question was submitted via chat by Marissa Graziano. So a living donor, it's a sort of hypothetical to comment on. So a living donor plans to donate to a family member, but wishes to remain anonymous throughout the entire process and into the future. The reason is because their intended recipient specifically stated that he, she was adamantly opposed to receiving a kidney from a family member. The donor team provides many things for the potential donor to consider, but where should we balance the donor rights versus the recipient right to know?

Martha Gershun

I think it would be impossible in real terms to do that. I mean, I guess you could donate in California and have your kidney flown to Boston and put in the body of a pissed off relative or a parent who refuses to put their child at risk, right? I mean, there are many reasons people refuse, but the real truth is Deb and I kept running into each other in the transplant center. And even if I had not disclosed to her that I was her donor, she'd have figured it out. I know, John, I mean, I just think practically it's not a viable thing, but what do you think from an ethical perspective?

Dr. John Lantos

Yeah, I think practically it could be done if you really wanted to. Ethically, I mean, it seems like keeping the identity of donors separate or non-disclosed is pretty standard practice unless the donor chooses to disclose.

Dr. John Lantos

I mean, you had to reach out to them.

Dr. John Lantos

But if you hadn't, they would never have revealed your identity. So I don't see an ethical problem with this. I mean, it seems like the family might be able to use a little counseling.

Transplant Grand Rounds host

It reminds me, when I was a medical student on the transplant service at Mass General, had a situation where a son was going to donate a kidney to his father and in the process of the blood work they found out that the son was not indeed the biological son of the father and it became a real question for them whether they should tell the family that this blood relation did not actually exist an ethical dilemma and the grizzled head of the transplant unit said, we should tell them and there'll be an extra cadaveric donor when the father kills the mother. Probably not an ideal situation. We have another question on chat through Dr. Andrew Smith, one of our cardiologists who inquires, do the ethics experience of using a surrogacy for pregnancy help inform issues related to transplant?

Dr. John Lantos

um

Dr. John Lantos

i mean only in the sense that that is uh one place where there's been a tremendous international and state-to-state variation in the laws governing uh surrogate pregnancies and in some states uh it's entirely legal and the contracts are enforceable in other states they're not and This is basically a market in not so much a body part, but

Dr. John Lantos

transplanting a womb, but you're renting one for nine months.

Transplant Grand Rounds host

Well, fantastic. Then there was one question which Dr. Lance, I think you started answering, but I think it may bear some discussion. The donor perception of the risk of death and morbidity may be higher in some racial minority populations. due to acknowledged history of bias in medicine. What are your thoughts around this issue? And I'll add on top of that, one criticism, but one concern about altruistic donation, especially for cases where it's directed against for a specific recipient who's been on Facebook or on the news is that those recipients tend to be upwardly mobile, white, highly educated, highly motivated. and it may exacerbate the existing disparities in transplantation since the poor, less socioeconomically advanced or the ethnic minorities may not have the resources or wherewithal to advocate for themselves to find a donor through those avenues. Do you have any thoughts about the ethical quandaries that... altruistic donation could pose in that setting, or I won't say it's so much a problem with the donation, but in the problems of sort of Facebook advocacy for trying to find donors, or what issues does that raise?

Dr. John Lantos

And so many issues on disparities here. It's hard to know where to start, but to get to the specific question, I mean, it may be that donor perception risk of death is higher because of a history of bias, but it's also likely that the risk that Black people have many more comorbidities, not so much because of a history of bias, but because of a history of other disparities, both in the social determinants of health and in access to healthcare. So higher rates of diabetes, higher rates of hypertension, less well-controlled could lead to more medical contraindications and higher risk of death. associated with race, but not caused by race per se, caused by racism and all the inequalities that that has led to. In terms of the crowdsourcing stuff, it's now been very well studied, both in

Dr. John Lantos

social media campaigns to try to get a donor specifically, but also in the much more common crowdsourcing campaigns to raise money for medical treatment, that you need to be a very sophisticated person with access to technology. And now there's even consulting firms that will help you mount a successful crowdsourcing campaign. 90% of crowdsourcing campaigns don't meet their goals. They're done haphazardly. They don't work very well and they probably cost people more than they raise. The ones that tend to be successful uh do have this beauty contest element that they tend to be people who are attractive who know how to tell a good story and in many cases are young white non-disabled uh etc so it it can certainly exacerbate uh disparities uh some places uh some transplant programs offer assistance if somebody wants to start a crowdsourcing campaign university of pennsylvania has started doing this, where they will coach people if they want to go out and try to find a donor, how to do a more successful campaign. So that will be a next generation ethical issue.

Transplant Grand Rounds host

Well, thank you so much for joining us both today. And thanks, everyone, for attending. really fascinating uh talk and i hope we have more collaborative sessions with the center for ethics uh in the future but thanks so much again Ms. Gershun and dr lantos uh for joining us today and uh thanks again for having us dr vong did you have any last comments let's see

Gerard Vong

No, it was really great to collaborate, and thank you so much to the really great speakers. I'll just put a quick plug in for the Center for Ethics. We run a bunch of events, including medical ethics events and other events, including health care conferences coming up in March. If you want more information, just go ethics.emory.edu. Fantastic.

Transplant Grand Rounds host

Thanks so much, everybody. Take care.