Kidney to Share

Steve Woolfolk

Good evening. My name is Stephen Woolfolk. I'm the Director of Programming and Marketing at the Kansas City Public Library. It's a pleasure to be here tonight to welcome you to another great event in our virtual signature event series. A couple of quick housekeeping items before we get started. If you're interested in purchasing the book, Kidney to Share is available from most major retailers, but we like to direct people to bookshop.org or to the independent bookseller of their choice. The last year has been difficult for a lot of people, and particularly for small independent booksellers. They need our support more than ever, and I hope that you will offer them your support. If you have questions for our guests tonight, you can drop those in the chat on the YouTube page, and we'll get to as many of those as we can. With that out of the way, let's get started. And to do that, I'm going to turn things over to Dr. Terry Rozelle. Dr. Rozelle is the Director of Ethics Consultation Service for the University of Kansas Health System. the Rosemary Flanagan Chair at the Center for Practical Bioethics and our moderator for this evening. Dr. Rozelle, thank you for joining us.

Tarris (Terry) Rosell

Thank you, Steve. And thank you, Kansas City Public Library for hosting this event. I am Terry Rozelle with the Center for Practical Bioethics. And with me this evening is Martha Gerson and John Lantos. They are co-authors of a brand new book titled Kidney to Share. It's published by Cornell University Press. It's in a series of books on a culture and politics of health care work.

Tarris (Terry) Rosell

With us also are all of you who are watching or listening by means of remote technologies. We welcome you. And we invite your input, your questions, your comments on the library's YouTube channel. We'd love to hear from you. So if you would like to comment or if you have a question, please place that where you can on the chat. Martha Gershon is a graduate of Harvard College. She also has an MBA from the Harvard Business School. She's a past executive director of Jackson County CASA, a nonprofit organization that provides legal representation for abused and neglected children. Martha's work now includes writing and speaking like this, plus consulting. John Lantos is a pediatrician and the executive director of the Bioethics Center at Children's Mercy Hospital here in Kansas City. Dr. Lantos is a professor of pediatrics at the UMKC School of Medicine. He is the author of several excellent books and numerous scholarly articles. Martha and John, I

Tarris (Terry) Rosell

finished reading your book just this past weekend. I have read a lot of books over the years, as you might guess. And frankly, I've read quite a few about living donor kidney transplantation also. It's been an interest of mine for a long time. And I have to say, this is among the better works that I have read. Thank you. It's very well done. So congratulations. Congratulations on completion of a project that is something akin to birthing a baby, yes? Yes. And that's how you describe this, Martha. You describe the process of going from the initial thought of donating one of your kidneys to a stranger and going from there to having actually done so. It even had a gestation. you write of exactly nine months. So get us started, please, Martha, by telling us the short version of what happened such that this book was birthed.

Martha Gershun

Thanks, Terry. Well, it does turn out to be ironic and coincidental that the project took nine months. I have to tell you, I did not expect it to take nine months. I watch a lot of TV, ER, Chicago Med, that kind of stuff. And my view was that from start to finish, offering to donate a kidney and complete recovery takes half an hour. It doesn't. And in fact, it takes, in some cases, a ridiculously long amount of time. I first read about Deb Porter Gill in the Kansas City Jewish Chronicle. I was sitting on the bed, I'm retired, do some projects, do some consulting. And I read about this woman who needed a kidney, a 56-year-old retired attorney. She had two kids. She went to the same synagogue that I had gone to. I never met her, but she seemed like a really nice person. And her story was very stark. She'd already had one transplant, a kidney, a pancreas transplant when she was in law school. And if she didn't get a new kidney, she was going to die.

Martha Gershun

read that story at a very particular time in my own life. I'd just retired. That meant I had time on my hands. I was looking for a project. I'd spent my career in nonprofit management. I was looking for the next way to be useful. Our kids had grown up, fled the nest, nobody looking for me to watch over them. And when I read the story, it was just clear as day. I can do this. It was not a completely foreign idea. My cousin Anne in Omaha had needed a kidney 15 years before. Her best friend had been the living donor. So my family had a little bit of a living kidney donation story in our history. I sometimes think not just a kidney donor, but the family member of a kidney recipient.

Tarris (Terry) Rosell

I

Martha Gershun

knew what this could mean. But I always want to tell the story in the context of a specific point in time. If I had read about Deb Porter Gill needing a kidney 10 years before when we were still taking care of the kids here at home, when Don's job was new, when I was crazy running my nonprofit, I don't think we would have been able to do it, and I don't think it would have crossed my mind. So whenever people say, what a hero or what made you think of it, I always want to say point in time matters, particularly with altruistic kidney donations. If it's your sister, if it's your child, if it's your spouse, even if it's your coworker in the office next door, point in time might not be such a consideration. But for an altruistic kidney donor, when you can do it or not, you can do it whenever, I think the timing has to be right, and the timing was right for me.

Tarris (Terry) Rosell

Thank you. And John, Dr. Lantos, you are a busy physician. ethicist, educator, manager, a very prolific researcher, writer also. You and I both know there's a lot of interesting things for research and write about in our field of bioethics. Why this one? Why did you decide to join Martha in this project on living donor kidney transplantation?

Dr. John Lantos

Yeah, sorry. That's a great question. And it has to start with the fact that Martha and I are dear friends who go to the same synagogue and often talk about both public policy issues, philosophical issues, civic issues, political issues. When Martha told me that, oh, by the way, I've decided to donate a kidney, I was, of course, quite fascinated and a little shocked. I wouldn't say horrified, but thought that this was a sort of bizarre thing to do as the first thing somebody who recently retired and might, you know, work on her golf game or take a cruise. No, no, I'm going to donate a kidney to somebody I never met. It was a story that immediately hooked me. And Martha's a writer. So

Dr. John Lantos

she started going through the process of evaluation that the book spends a lot of time talking about. And with each step, we would have another conversation. And through those conversations, I would often end up talking about the history of transplantation and some of the reasons why many of the practices that Martha experienced as a potential donor, why they exist. And as a bioethicist, anybody who works in bioethics knows that transplantation is A, one of the most phenomenal medical accomplishments of the last half century. I mean, when people first started trying to donate kidneys in the 50s, it was a miserable failure, almost 90% of the time. When donors gave up their kidneys, the recipients did not do well. They didn't understand immunology. They didn't understand histocompatibility. It was wild west experimentation with disastrous results, but they learned a lot over the years and

Dr. John Lantos

developed this technology that's, as I say, one of the most phenomenal breakthroughs in medicine. At the same time, and this is what interests me most as a bioethicist, transplantation raised a number of issues that required societal changes in the way we think about organs, the way we think about patients, the way we think about death. So for example, the concept of brain death was invented largely to facilitate organ transplantation. Before that, in order to get a kidney, not from a living donor, but from a deceased donor, you had to wait till they died. And if you waited until they died by traditional stopped breathing, heart stopped beating criteria, the organs would not have gotten enough blood and oxygen and they would be damaged. So the transplant wouldn't work. And so a group of scholars at Harvard in 1967 said, we're going to redefine death. Death doesn't mean your heart stops anymore. Death means your brain stops. And if they could prove that the entire brain had stopped functioning, even while people were still on a ventilator and their hearts were beating and their bodies were warm and pink, these doctors at Harvard, doctors and philosophers and lawyers said, you're dead. And all 50 states in the United States passed laws changing the definition of death. partly to facilitate transplantation, partly to facilitate withdrawal of life support, which was then no longer considered life support. Transplantation also raised phenomenal issues about justice. So many people have kidney failure, and I'll give you numbers in a minute. There aren't enough organs to go around. Dialysis helps a little bit, but... Dialysis is an incredibly burdensome treatment and almost everybody on dialysis would prefer to get a kidney transplant. There aren't enough kidneys. Who should get them? What's the fairest way to both procure kidneys and then also distribute them to these desperate people on waiting lists? And so the work on trying to figure out a fair way to allocate this direly scarce resource became one of the central issues in bioethics. And I'll just mention one third issue, which is most relevant to our book. The whole idea of donating to someone who is not related to you raises interesting questions about the nature of altruism. When strangers like Martha, who didn't know her recipient, came forward, first and said, I'd like to donate a kidney. No, it's not to my sibling. It's not to a family member. It's not to a spouse. It's not even to a friend. I want to give it to somebody I'd never met. In the early days of transplantation, the first response of doctors was to say, go see a psychiatrist. You must be crazy. And the psychiatrists would evaluate these people and in many cases

Dr. John Lantos

said, you know, we talked to them for an hour. We probed every aspect of this decision. And they seem sane except for this one decision where they want to do this crazy thing. Let somebody cut them open and take out one of their organs and give it to somebody else. But there's no reason on the basis of insanity to stop them. Some countries pass laws prohibiting donation to strangers. The UK had such a law that was then overturned when somebody challenged it. In Germany, it's still the case. You have to prove a relationship. But so there were all those things. And then just to set the sort of background for this and give people some numbers, there's about 100,000 people in the United States today on the transplant waiting list for a kidney. About a dozen of those people will die every day while they're waiting for a kidney because dialysis only works for so long. If they get a kidney from a living donor, their prognosis is much better. Living donor transplantations have much better outcomes than cadaveric donor transplantations for all sorts of interesting and complicated reasons. But in general, because living kidney donors are screened and proven to be perfectly healthy.

Dr. John Lantos

And in 2020, there were 17,000 kidney donors altogether in the US. 5,000 were living donors. The rest were deceased donors. And of those, about 10% were to someone unrelated to themselves, the living donations, although most of them were friends. So the donation to a stranger or to someone you don't know is still very rare. But these issues all sort of came together with our friendship and Martha's compelling personal story. And that's what led to the book.

Tarris (Terry) Rosell

So to be clear, Jen, If Martha had come to you and said, I'm going to share my kidney with my daughter, my son, or my best friend, your response would have been different.

Dr. John Lantos

I think it would have been different. I mean, I think for me, as for most people, making that sort of sacrifice to a loved one is easier to understand. We will make all sorts of sacrifices for family members, even for close friends who we love very much. But to do that for somebody you've never met is an extraordinary act of altruism. And that was both intriguing and a little puzzling.

Tarris (Terry) Rosell

Martha, despite the apparent need for altruistic living donors. John has just cited some data about that. Despite your willingness to do your part to meet that need, it wasn't an easy process, was it? It wasn't just, as you said earlier, just a quick half an hour road to becoming a living donor. You write rather critically of the Mayo Clinic donor evaluation process in particular, what, quote, hassles, unquote, what hassles did you encounter along the way to becoming a donor?

Martha Gershun

Well, as you know, because you've read it, Terry, it's in some ways the heart of the book. And I always want to distinguish, I have no criticism of the medical care, the surgical care or the post-surgical care offered by the Mayo Clinic. It's extraordinary. And anybody who sees this webinar, if you need medical help and you can go to Mayo, go to Mayo. I would too. But the screening to be a living donor is not just medical. It's bureaucratic. It has to do with policies. It has to do with procedures. And that struck the business school chord in me, the person who studied customer experience at the Harvard Business School. tried to live by those principles as first a corporate executive and then a nonprofit leader. It seemed to me, if we need more living kidney donors in the world, then we should make it as easy as possible within the safeguards of medicine to be a living kidney donor. We shouldn't throw up all these bureaucratic systemic obstacles.

Martha Gershun

There are a lot of them. So I'm gonna give you two examples. They are not the only ones. The book is full of them, but these two are pretty stark. Quite far into the process, after I had already been up to Mayo, I'd had my week long evaluation. I had already sent up countless boxes with vials of blood. I had done a great many things. I got an email through their portal that they were ready to take me to committee. That's kind of like the admissions committee for a living kidney donor. They were ready to take my file and make a decision. And oh, by the way, could I please, by tomorrow morning when I go to committee, send them my faxed results of my colonoscopy, my pap smear, and my mammogram.

Martha Gershun

Now, the reason this is shocking is not because they needed those things. Of course they needed them. And many times along the way, people had asked me, is your colonoscopy up to date? Is your mammogram up to date? Do you get annual pap smears? Yes, yes, yes. But nobody had ever asked me to send them up before. And I found myself thinking, I've talked to these people once a week for the last eight months. They could have just once given me a checklist. And it said, please send us your colonoscopy, your pap smear, and your mammogram results. I would have done it. I'm a very compliant person. But oh no, the day before we're going to committee, they need these things. And it just so happens that I had those three procedures done by three different providers in three different parts of town using three different electronic portals, and one of whom would only release the results if I showed up in person. So I canceled my plans for the afternoon, got in my car, and started driving around. know pick up my pap smear here get somebody to fax my mammogram here go get my colonoscopy there and what i found myself thinking was easy enough i got gas in the car the things i canceled were social what if i had been a poor single mom with three kids trying to donate her kidney to save her sister she can't just walk out of her job at mcdonald's and run around and get her colonoscopy results a little advanced thinking like something called a checklist, could have made this so much more efficient. I'll tell you one more story. Most people who read the book, they say it's their favorite. We call it the dry ice saga. And it goes something like this. There's one blood test you have to do at the very end within 28 days legally of donating an organ. And it's a blood test for HIV, hepatitis and AIDS. The answer is no. obvious why we're going to do this. We do not want to give an infected organ to a transplant recipient. If I should carry one of those diseases, we want to know. And the reason they do it very close in is those are diseases that you can catch on an ongoing basis. During the nine months of this process, even if I've been screened early, perhaps I picked one of those things up along the way.

Martha Gershun

So I get a notice from the mail portal. We're sending you a box. Please go like you have a many times before to your physician get blood drawn this one has to be sent on dry ice

Martha Gershun

so i called i said how do i do that call your doctor he'll know i call my doctor's office they've never shipped anything on dry ice ever i call quest diagnostics they won't do it they don't have a relationship with mayo i look up dry ice online The local hen house has dry ice. I stopped by there. They sell it in 10 pound slabs and it's so dangerous to touch. They will not let their employees break it up.

Tarris (Terry) Rosell

I call Mayo again.

Martha Gershun

Well, you could come up three days before your transplant at your own expense and we could test you then, or we can test you the morning of surgery and wait for the results before we operate, possibly delaying your surgery by hours. these were not good answers in the end now you don't have to read the book because i'm going to tell you i found an industrial supplier of dry ice in miriam i found a really nice guy who told me there's something called industrial pellets we'll pack it for you i called fedex who told me it is listed as a hazardous material and the only way to mail it is to take it to the major depot in lenexa And in the end, I got it done. But once again, I found myself thinking,

Martha Gershun

it literally took all of my skills as an experienced manager with a Harvard MBA to get that damn box shipped up to Mayo. Surely, they should have a national contract. Surely, you don't really need to ship this stuff on dry ice. Surely, there's some other answer. How about we test it here in Kansas City? and I fax the results to Mayo, I'm pretty sure there's a lab in Kansas City that knows how to test for HIV, AIDS, and hepatitis. So this complete lack of concern about finding ways to make it easy for the donor, and instead throwing all the logistic hassles of moving the process forward onto them, I came to think was a bit much.

Tarris (Terry) Rosell

Thank you. I'm smiling as you tell that story because it seems so ridiculous. I'm sure you were not smiling as it unfolded. And for those of you who are listening and aren't familiar with the cities in Greater Kansas City, Merriam and Lenox are two wonderful cities here in the Greater Kansas City area. John, on page 78, you write about the success in Ireland. I think it was John that was writing that. In streamlining living donor evaluation process, they can do it in a day with all the stakeholders that they then get evaluations from giving the process really high marks. You ask why US transplant centers are not following the Irish example. Why especially has the Mayo Clinic not followed the Irish example, having the reputation of being one of the greatest innovators in health care in the world. What do you think?

Dr. John Lantos

I think it's really difficult to answer that question, although I don't think it's just the Mayo Clinic, to be clear. Other people who have written about the process of becoming a kidney donor at other places recount very similar experiences. In fact, it's one of the most common tropes on a lot of the websites and Facebook pages where people talk about their experiences.

Dr. John Lantos

If I had to speculate, I would guess that it grows out of this history of distrust and suspicion about living donors. And it almost reminds me of a tradition that exists in Judaism, where if somebody wants to convert to Judaism, they go see a rabbi, and the rabbi is supposed to assume they're crazy, because who would want to convert to Judaism? And so they're supposed to send them away three times and say, no, no, no, I don't do that. And if they come back a fourth time, they must really be committed, and therefore the rabbi will start to teach them the rules. It seems like for many transplant centers, there's almost a similar attitude. We want to see if you're serious. We're going to make this difficult for you. We're not going to set up our systems to facilitate the process. And if you're really determined, you'll come back. In the early days of living donation to an unrelated person, to a stranger, a lot of times after this psychiatric evaluation that I talked about, the psychiatrist would say, wait three months, or sometimes even wait six months. I mean, go home and think about this.

Dr. John Lantos

We don't want this to be a rushed decision. So I think that's one of the reasons. But maybe a more important reason, although less

Dr. John Lantos

intellectually interesting, is simply institutional inertia and the fact that institutions aren't designed to take care of someone who's not a patient, who doesn't have a disease. And in some ways is more part of the supply chain than they are part of patient care services.

Dr. John Lantos

And so they're treated like a vendor. They're treated like someone who's trying to sell something to the institution rather than somebody who's trying to donate something to the institution. One bit of evidence that suggests this might be the case. is that I think we're going to talk a little bit later about some of the innovations in donation like paired kidney exchanges and even chain donations where somebody doesn't donate directly to a loved one, but they donate to somebody else's loved one and that somebody else donates to their loved one. And these require a whole different sort of logistics to set up because sometimes there's five different transplants going on in five different cities. And when those became the norm and people started doing those, they figured out whole different ways of doing some of these logistical things so that somebody in, say, Phoenix could donate to somebody in Omaha, could donate to somebody in Philadelphia, and they didn't all have to go to the same center to get their testing done. The hospital in Belfast is a remarkable story. It seems to be one where they said, we're going to fix this, and we want to encourage living donation as do many centers now and they said we can do this in a day and it's sick they didn't cut corners they didn't

Dr. John Lantos

do the screening any less thoroughly their outcomes are just as good but they said we're going to try to make this easier for the donors and when an institution is committed to that it seems like it can be done

Tarris (Terry) Rosell

so you mentioned paired kidney exchange. And one of the issues that came up 25, 30 years ago when that was first posed as a possibility was pertaining to the key ethics issue of voluntariness. If you have five pairs of persons in a chain. And you might need to describe a little bit more how this works. And you've written that there in some places dozens of pairs in a chain. It seems like if one potential donor decides as they're being wheeled into OR, I don't think I really want to do this. there's a lot of pressure not to break the chain. So what does that do to the ethics issue of voluntariness? Well, one of the things that is looked at then, so as to help not make that happen, whether it's a paired kidney exchange or just two people like Martha and Deb, is this evaluation of psychological health. the questioning of rationality. John, you write about it as they must be insane. Martha, tell us a little bit about how your rationality was evaluated so as to ensure that you were doing this of your own free will, voluntarily, rationally, and altruistically.

Martha Gershun

You know, I think it's a really interesting part of the story. First, what I want to say is at every step of the way, from that first phone call, every appointment, every doctor, literally up until they wheel you into surgery, there's a pretty constant mantra that goes something like this. You don't have to do this. This is surgery you do not need. Your recipient has other options. And if you choose not to do this, we will just say you are medically disqualified. So there's an immediate, there's a promise of cover and this promise, you know, let's say the chain situation that you illustrated, there are other options. You really truly aren't the only way this is going to happen. You're just the easy way it's going to happen right now because here you are. I took that seriously. I believed it. I absolutely felt that if at any point This had stopped working for me. They wouldn't have called Deb and said, your donor. I felt that the cover was real.

Martha Gershun

Let me tell you the ways in which I thought my rationality were challenged. I'm a pretty forthcoming transparent person and I answered every question on their intake form. on the computer completely honestly, because I didn't know what might compromise my health or compromise Deb's health. I thought I should probably be honest about this. It wasn't a job interview where I was supposed to paint the rosiest picture. And there were two questions that my honest, complete answers raised big red flags for the system. One of them was the question, have you ever participated in recreational drug use?

Martha Gershun

The answer is yes. I was in Colorado. We were on vacation. It's legal there. I smoked a little weed. The answer is yes. And I said yes, because I thought, well, I don't know, maybe smoking two joints in Colorado ruins your kidneys. I better say something. And the other question was, have you ever consulted a mental health professional? The answer was absolutely yes. I've had a therapist I've seen for many years of on and off when I have something to talk about. She helped me decide that it was time to retire, helped me untangle some things about my family of origin. These are red flags in the transplant system. They both suggest possible mental health concerns. So Mayo's response to those was pretty intrusive and pretty aggressive. They would only test my blood to see if I was a match for Deb. if I would consent to faxing up my mental health records

Martha Gershun

and if I would agree to see a substance abuse counselor if I was a match at Mayo when I did my evaluation. And I said yes to both because I wasn't getting busy disqualifying myself. What I didn't realize were two things. One, when I did match with Deb and I did go up to Mayo for my evaluation, It turns out substance abuse counselors are like a really rare commodity at the Mayo Clinic. There's a lot of demand and not a lot of supply and they couldn't get me an appointment. I had 24 appointments in three days and they couldn't find me a slot for a substance abuse counselor. They wanted me to fly back a month later for their one available appointment, postpone the transplant and come back at my own cost. They wouldn't let me see a substance abuse counselor in Kansas City. They wouldn't do it by Zoom, Skype. I bet they do now. I wonder if COVID hasn't changed some of that. There wasn't much telehealth then. And they wouldn't believe that I just smoked a couple of joints in Colorado. I thought that was real stigma and it was terribly inconvenient. And you can only imagine that once again,

Martha Gershun

being well-resourced, being retired, I could have gone back to Mayo for that appointment. But you can picture all the people who can't. I'm not super concerned about the well-resourced altruistic donors like me who may or may not be kicked out of the system. I'm worried about people without those resources who are desperately trying to save the lives of loved ones and how these barriers present, I am confident, insurmountable obstacles and unnecessary. On the mental health question, when I called my therapist and said, can you send me a release? We're going to send all my records up to Mayo. She said, no, we're not. These are your records. They're private. There are conversations between you and me. Once I send them up there, they will eventually get merged with Deb's records. There's HIPAA, but two patients undergoing transplant surgery have an interesting medical confidentiality relationship. She said, I'll write him a letter. I'll give them my opinion. I'll tell them I don't think you have any diagnosis or anything that should compromise that, but that's all I will do. As it turned out, they took that. That was good enough for them. But then why didn't they just ask for that?

Martha Gershun

So there were many steps along the way that I thought of as annoying. I still think as overreaching barriers, but John has helped me see fall in line with this gestalt from way back that altruistic donors are probably nuts.

Tarris (Terry) Rosell

So I want you to be able to tell the rest of the story. After you got a date for surgeries, it didn't all go well even at that point. But before you do that, John, I'm wondering if you could read a bit from pages 58 and 59, at least in my version of the book.

Tarris (Terry) Rosell

where you write about a patient called Susan that was another physician's patient. And this is in the context of voluntariness and rationality. Why would someone donate their kidney to a stranger? And this was a rather compelling interview. Could you read a bit and tell us a little bit about that?

Dr. John Lantos

I'll do that. Let me just comment on one thing that Martha said. My hunch is that if you gave the example of somebody desperately trying to save a loved one, having to jump through all these hoops, my guess is if you're trying to save a loved one, there would be fewer hoops. Because this is about the stranger donor or the altruistic donor. So somebody donating to a family member would not run into these hassles. And somebody who lived in the same city as the transplant center wouldn't have had quite the same number of barriers. So that may be another reason why

Dr. John Lantos

this was particularly onerous for you. But yeah, so in the book, talk about an interview that was published. One of the psychiatrists to whom a potential donor was referred wrote a paper. And this was published in 2003, so less than 20 years ago.

Dr. John Lantos

And the psychiatrist's name was David Steinberg. And he just calls the patient Susan.

Tarris (Terry) Rosell

And he

Dr. John Lantos

says, he asked the patient why she would want to donate a kidney to a stranger. And she replied, I believe I should try to help people. This seems to be a perfect opportunity to help someone in a big way with minimal inconvenience to myself. Steinberg pressed her on her characterization of the risks of surgery as a minimal inconvenience. She said the doctors told her it was a one in 2,500 chance of dying during the operation. And she said, when I first thought about giving the kidney, I was a bit freaked out thinking about this worst case scenario, death or rejection by the other person. I guess that's where my faith in God comes in, she went on. I believe God wants me to use my life to help other people, and the rewards will be a much deeper happiness and a sense of real fulfillment in my life. Anyway, 1 in 2,500 chance is a pretty slim one. Steinberg, the psychiatrist, says, most people who believe in God do not donate a kidney to a stranger. Susan says, just because most people don't do it isn't a reason to ban the minority who want to. She told him she was a regular blood donor and signed up to be a bone marrow donor. And she saw all these as logical actions of someone who wanted to show love to others. Did you consider that if anything went wrong, your seven-year-old son would not have a mother, Steinberg asked. Susan said that you could ask similar questions of police officers or firefighters. They could lose their lives. They chose to take a risk for the sake of the good they are achieving through their dangerous occupation. We don't tell them they shouldn't do their jobs. Also, she said, if I don't donate my kidney to someone, maybe their children will lose a parent. or have a parent living on dialysis. The best I can do for my son or daughter is to give him a good example. Susan felt that donating fit into her religious beliefs and was consistent with biblical injunctions to help heal the sick. Steinberg worried that she was a member of a religious cult. Susan was offended. And it goes on like this, sort of describing this sort of chess match of the mental health professional sort of fishing for some sort of psychiatric diagnosis that he could use to impugn the motives, perhaps voluntariness, and in a sense, the sanity. So this idea that

Dr. John Lantos

altruism is good up to a point, but beyond a certain point, altruism is thought of as a sort of moral flaw or even a sign of irrationality that needs to be curtailed runs through the last 50 years of living kidney donation and was, I think, a lot of what led to the sorts of policies and procedures that Martha experienced.

Tarris (Terry) Rosell

I was thinking as I read the account of Susan's interview, I'd love to have her in an ethics class. I'm guessing she took a course in logic at some point.

Dr. John Lantos

She eventually was allowed to donate, but they made her wait three months.

Tarris (Terry) Rosell

So there's a question from an audience member, and this might be something you could address, Martha, maybe not, but do you have a sense of what the physicians at Mayo have thought about altruistic donors? There's a process, there's a system, but you met with lots of individual clinicians. Did you get a sense of... how they thought about this thing that you're doing?

Martha Gershun

I never felt that on an individual basis, they thought I was crazy. It was the system or it was the protocols. Individually, they were warm, gracious. They shake your hand, they look you in the eye, they say thank you for doing this. And the doctors at Mayo are pretty confident, right? They have a phenomenal track record. They do more kidney transplants than any transplant center in the country or living kidney transplants. And they know they're not going to kill you. I mean, they're very confident that they are not going to kill you. So I think for them, it's all gratitude because they don't get to do what they do called be a transplant surgeon. The family members of deceased donors don't agree to donate or people like me don't agree to be living donors. So from a physician standpoint, I felt nothing but confidence and appreciation. It's the system, it's the hoops they make you jump through that make you feel not appreciated, not the individuals.

Tarris (Terry) Rosell

And so you did get through the hassles of the donor evaluation process. and you've got a surgeries schedule, but it didn't all go as planned. What happened?

Martha Gershun

So this is not anybody's fault. This is just sometimes what happens. Deb and I had a surgery date, September 18th. We like that date because in Judaism, 18 is a very, very lucky, propitious number. And so our surgery date was 9-18-18. Deb and I thought we had the best date in life. hundred years. My husband Don and I drove up early the day before. They do all the tests all over again.

Martha Gershun

Chest x-ray, EKG, blood pressure, everything to be sure that you really are okay, you're good to go. They sent me back to the hotel that night with a bottle of antiseptic soap to scrub with and a really big bottle of laxative I was supposed to chug about eight o'clock at night, which I did. And then at nine o'clock at night, the phone rang. It was the Mayo Clinic. It was the nephrology fellow in the hospital. Deb had checked in the night before for the surgery. And he said, we're canceling your surgery. And I literally couldn't process the information. He wasn't somebody I'd met before. He was a new name to me. And I just kind of kept saying, say that again, what? It turned out that when they did a body scan on Deb before the surgery, they found shadows in her lungs. They didn't know what they were. But if it was an infection, transplanting her with my kidney and then infusing her body with immunosuppressant drugs was going to be a real problem. And they couldn't assemble an infectious disease team. It was 9 p.m. at night. They really had to wait until morning, which meant they had to call the surgery off.

Martha Gershun

And all of that I understood. It was heartbreaking. And we didn't know if they'd be able to reschedule it. I didn't know if Deb would survive.

Martha Gershun

But it was also practically one of the most confusing and weirdest episodes because nobody knew what to do with me. They knew what to do with Deb. Keep her in the hospital, flood her with antibiotics. flutter with prednisone to see if they couldn't clear up the inflammation and see what was going on. And I said, should I go home? Who are you? I'm the donor. We don't know. When are we rescheduling? We don't know. What do you want from me? We don't know. There was literally no plan about what to do about the supplier of the kidney who is carrying it around inside of her.

Martha Gershun

In the end, they finally decided that they were gonna wait a week, see if Deb's infection cleared up. Could Don and I please go home? And they would call us on Monday afternoon when they knew that Deb was good to go. And then we would have to do lab starting at 6 a.m. on Tuesday morning. And I said, you want me to drive through the night to get to Mayo? Where are you? He said, I live in Kansas City. It's in my chart. You're not here? no i live in kansas city it's in my chart i do not want to drive all night what alternatives do we have oh oh i mean just this whole kerfuffle so it was just again one more time where you both see this excellent medical care right this absolute commitment not to put deb at risk and the ability to get her in a situation where she could have the transplant surgery And this complete inability to think about me, as John said, as a piece of the supply chain, but an actual living human being walking around holding their kidney. And they just couldn't seem to keep track of who I was or where I was or my role in the process. That was the time I had to advocate most aggressively for me, for Don, for what we actually were willing to do. Maybe if it had been to save my own child's life, I would have driven through the night to do the surgery. But it seemed to me that that was the point where I needed to say, hey, you guys need me to get this done. Let's work together to make it reasonable.

Tarris (Terry) Rosell

So have either of you, you've already spoken publicly, you've written, your book is out. Have either of you heard from anyone up in the largest transplant, kidney transplant program in the country Have you sought an audience with them? Are they with you? Are they happy with you or maybe not so much?

Martha Gershun

We have heard nothing. So John and I are talking to a number of bioethics centers and transplant centers around the country in our virtual Zoom book tour, places in California and Chicago and New York. I sent a copy of the book to the ethics team at the Mayo Transplant Center and we have not heard back. So I don't know, perhaps they're too busy or perhaps this is not a brand name that you criticize it. I'm not clear. John, do you have a thought about whether or not we're going to

Dr. John Lantos

hear? No, we'll see.

Martha Gershun

I believe that they're committed to continuous process improvement. Everything I saw when I was there would lead me to believe that. I don't think my book sounds shrill, but perhaps now they really do think I'm crazy.

Dr. John Lantos

And in some ways, I mean, whether it has an effect on Mayo is one thing. Many transplant centers struggle with the same issues.

Dr. John Lantos

This book nudges the process along so that transplant centers around the country or around the world start looking at better ways to do this, looking at the model they developed in Belfast. One of the questioners asked whether Belfast has a health system similar to the UK. They have their own national health service independent from the UK National Health Service, but similarly taxpayer supported and comprehensive. But I'm not sure if the Belfast model has permeated the whole Northern Ireland system or whether it's just one hospital. But I think if we could get other hospitals to start looking at some of these, and a lot of the places we're going, people are inviting their transplant teams in. It may lead to some self-examination and perhaps some change.

Tarris (Terry) Rosell

Another one of the questions from a viewer has to do with HIPAA privacy rules. You mentioned and you write something about HIPAA being interesting for the donor. And some of your records end up in the recipient's electronic medical record, which then is accessible to anyone who has HIPAA permission to access the record. Can you talk about that, either from an ethics perspective, John? Or how does that make you feel, Martha?

Dr. John Lantos

I wonder if it's true, actually, Martha. My sense is the donor evaluation is probably kept separate. Just the way the team that was taking care of you knew nothing about Deb and Deb knew nothing about you. I mean, you know about each other because you privately contacted each other. Had you not, they would not have shared that information. I think there are other reasons why Mayo shouldn't have seen your entire mental health care records. I think your therapist made the right decision, but I don't think it's a big HIPAA concern.

Martha Gershun

The distinction that I understood as a

Martha Gershun

layperson, it didn't have to do with the electronic medical records so much, Terry, but that in order to get me approved, to be the donor, my file had to go to the committee.

Tarris (Terry) Rosell

Oh, okay.

Martha Gershun

And the committee is not just my providers. It's a bigger, broader group. So it wasn't so much that my entire file gets uploaded and when Deb goes to her portal, she can pull down how much I weigh, but that it isn't the exclusive Chinese wall that typically exists. Does that make sense? That was my understanding, not so much. I think the electronic record probably is protected.

Tarris (Terry) Rosell

I would think so, too. And thank you for clarifying that. Someone else asked, is there any evidence that someone who wanted to donate a kidney was excluded on the basis of mental health concerns? Oh, yeah.

Dr. John Lantos

Well, I think it's one of those questions that can't be answered since if they were, they probably wouldn't tell anybody.

Martha Gershun

I have a friend who donated a kidney in a period exchange for his wife, and he was asked to wait three months while they did a psychological evaluation. If you answer one question wrong, when I was up at Mayo, I saw two social workers, a therapist and a financial counselor. I saw almost as many mental health professionals as I saw physical health professionals. And I got the sense that you better not make a misstep. At one point

Martha Gershun

the day before the transplant, when I was seeing the social worker again, and she said, what are you looking forward to doing after the transplant? And I said, I don't really have any plans after the transplant and I could just feel the room go ice cold, you know, like I just answered the wrong the wrong way on a suicide prevention question. And I realized that she thought I meant I have no plans, because I do not foresee my life beyond this point. And so I backtracked really fast and I said, it's been a really busy summer. Our son got married. We took a three week trip to Scandinavia. My first book was published and I was on book tour. I am looking forward to not having things on my calendar. And then I could see like she was like, OK, we don't have to call this off because the donor is suicidal. But you feel like you're walking a tightrope all the time. Yes, I can do this. Yes, I want to do this. Yes, this won't send me into a tailspin. Nobody's paying me. I'm not being coerced. I mean, you've got to have your story straight.

Dr. John Lantos

I'm curious on that one, Terry. I mean, you're on the UNOS ethics committee. Have you heard of people being deemed for or rejected because of mental health concerns?

Tarris (Terry) Rosell

Yeah, actually, I've not served on the UNOS ethics committee. I know some people who have. And I'm not answering that question, but I have been an ethics consultant in living donor kidney cases in years past with questions raised about mental health. But in each of those cases, the transplant, the donation of the transplant went forward, not without consequences in every case, but But I think it's an interesting question that is raised. I have another question for either or both of you. You write a lot about incentives and disincentives and the ethics of that. And, Martha, you experienced especially things that you experienced as disincentives to becoming a living donor. John, you write on page 117 about a logical and legal alternative. You write, organ donation programs could improve their customer service and possibly retain more potential donors if they develop the ethos of their philanthropy departments instead of the ethos of their surgery departments. Want to talk about that, either of you or both?

Dr. John Lantos

Sure. I mean, in some ways, that's the take-home message of the book, that kidney donors are donors. Hospitals are incredibly bureaucratic places. They're difficult for anybody to navigate, whether you're sick or trying to help a loved one or trying to donate a kidney. But one department in most hospitals that can cut through almost any bureaucratic red tape is the development office. If somebody wants to give a lot of money, suddenly barriers fall and wheels are greased and care is... facilitated if kidney donors were treated as philanthropic donors, then they would have an advocate. It may not be the typical advocate, but having a senior development officer on your side is a great way to sort of make things happen in a hospital. So it would be a mindset shift more than anything else. I mean, the goal would not be to compromise the thoroughness of the evaluation, but simply to address some of the kinds of unnecessary barriers and even some of the stigmatization that might discourage a lot of people who want to

Tarris (Terry) Rosell

donate. So incentives is one thing, eliminating disincentives. Marketing kidneys is another thing. And this is actually, I don't want to leave this session before we address this because it's probably the most ethically controversial thing that you write about. I'm not positive that you both agree about this, but Martha, you're pretty clear that you could vote for the permissibility of selling and buying kidneys. Is that true?

Martha Gershun

I think so. My first interest is in eliminating disincentives. One of the things we haven't talked about yet is the literal actual cost of donating a kidney. They spend a lot of time telling you about how your medical costs will be completely covered, and they are. I paid for nothing at the hospital, nothing I ate, nothing I used. That bottle of laxative they sent me home from the clinic with never showed up on a bill. Deb's insurance paid for everything. but it pays for no out-of-pocket expenses, no hotels, no pet sitter, which is what I need because we didn't need childcare. I was retired, so I didn't miss any work, but my husband missed over four weeks of paid work in order to be my caregiver in these various visits up to Mayo. So I added it up, mostly because John and I were writing a book, all in between Don and me. We spent 10 work weeks on this project. time that we could have been working but instead we're doing this and over four thousand dollars out of pocket we were very fortunate um deb's uh deb was in a position to reimburse us the four thousand dollars and if she had not been able to we would have been able to do it but that's not true for everybody so i always want to start with the point of how ridiculous is it that you make the donor who's giving their kidney which enables this process which lets the hospital make money pay for the privilege and not everybody can. So there's that issue. But yes, I think we should be able to sell organs. I also believe sex work should be legal. I believe surrogacy should be legal. I'm a real body autonomy person. It fits in a life view. But from my point of view, if we're willing to let a single mother with three kids work at McDonald's during a COVID pandemic, possibly catch a virus and take it home to her three children and her sister who lives with her. And we don't think that's too dangerous. But we think it's too dangerous for her to donate a kidney, which I'm living proof is a very safe thing to do. I find that very paternalistic.

Tarris (Terry) Rosell

John, in 30 seconds, do you agree?

Dr. John Lantos

30 seconds. Two things. One, donors should be compensated for their time and out-of-pocket expenses, and the model there would be surrogacy and pregnancy. We don't consider that a market in babies, but we think that somebody who's going to spend nine months carrying a baby for somebody else deserves to be paid for their expenses covered. A similar thing would facilitate transplantation. As far as markets beyond that, I think it is time to perhaps do a pilot study. The arguments for and against markets describe either good outcomes or bad outcomes. It will either increase the kidney supply, improve outcomes, and save money, or it will lead to exploitation of the poor organ farms and lower quality transplants. Those are hypotheses that could be tested by a carefully done pilot study to see whether a well-regulated market can achieve the good goals and not the bad ones.

Tarris (Terry) Rosell

We're at time. Any last comment, takeaway? What do you hope our viewers take away from this hour together? Martha?

Martha Gershun

Well, what I always want to end by saying is that the hassles are something I complain about and advocate to fix because I believe we could do better in terms of policy and in terms of practice. But donating a kidney was truly the most meaningful experience of my life. And I always say, if I could, I'd do it again.

Tarris (Terry) Rosell

Jan?

Dr. John Lantos

Yeah, I mean, we talk a lot about the hassles and about some of the system changes. But sort of the heart of the story is Martha's act of radical altruism. I

Steve Woolfolk

mean,

Dr. John Lantos

to read an article in a paper about someone who needs a kidney and say, I have two. I'm going to give one, is unusual, admirable. And the real story there is of this kind of ordinary heroism that many people do, but not enough to do.

Tarris (Terry) Rosell

So the last audience question is, why Cornell University Press?

Martha Gershun

You want me to tell them the real answer, John? The real answer is we knew we wanted an academic publisher and I started pitching the book alphabetically. And when we got to the C's and Cornell said, yes, we were done.

Tarris (Terry) Rosell

That's a great answer and a great way to end a really interesting, provocative conversation. You both know that I have a dozen more questions at least after reading your book with sticky notes on almost every page. So sometime we're going to get together and talk again. But thank you. Thank you, Martha Gershon, Dr. John Lantos. Thank you both for your book, for this conversation about the ethics of living donor kidney transplantation. Thanks also to the Kansas City Public Library for hosting this event. I need to say thank you to my employer, the Center for Practical Bioethics, for collaborating as we always do on worthy projects like this event this evening. Thanks to each of you who have tuned in. Our best to each of you and goodbye.