Arthur Caplan - Ethics and Moral Issues Around Human Transplants

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Dr. Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota speaking at Plymouth Congregational Church in Minneapolis. Caplan’s address was titled, "Ethics and Moral Issues Around Human Transplants." Dr. Caplan is a nationally recognized authority on ethical issues related to biotechnology, medical ethics, and health policy. He has written extensively on a wide range of topics pertaining to medical ethics.

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The topic that I've got transplants is one that I think is of interest for two reasons. The first set of reasons that it's of interest is its inherently an interesting fascinating topic there is nothing stranger and I've seen it. I don't know 10 years now then taking parts from dead bodies and putting them into living bodies and watching the parts work. It's a very weird thing it touches upon all sorts of views and values and fears and hopes that we in this Society have concerning death salvation transformation. It's for to some extent even the idea of life after death through the process of transplanting organs from the dead to the living of course, not all transplants come that way some come from live donors and while in fact the image that most people have when they think of transplant. Well actually the image that most people have when they think of transplants. It's something very yucky, but if you get beyond that image, The next image you have is one that probably involves a heart or liver or lung one of these life-saving organs. But in fact the bulk of transplants in the United States don't have anything to do with solid organs as they're called. They actually concerned skin and cornea and Bone. They're probably 20 times as many skin bone and cornea transplant says there are heart liver and lung transplants, but there's much drama associated with solid organ transplant. And in fact, there is even the ability frequently to save a life. It's dramatic. It's exciting. There's something important about it. And for me, the reason I got so attracted to it long before I came to Minnesota my interest in transplants grew not from being around the surgery department at the University or seeing places like May or Abbott do a lot of transplants. It really came from the fact that transplants in incredible as it may seem to you cost a lot of money. They really are expensive procedures to do and one of the things that led me to take an interest in them is that they I think are kind of like a canary in the coal mine about what happens in our Health Care system and what will happen. In fact in other Health Care Systems when we have to make harder choices about how to ration resources one reason to be interested in transplant is it's just inherently interesting. Lots of good issues come up about who gets them and what happens and I'll talk about those but even if you're sort of not fond of transplants If your heart isn't in it. I almost didn't tell you that but then it's interesting because it's a kind of a early warning sign of how this Healthcare System might wind up rationing and allocating resources of other types transplantation is a little different. It's always had an inadequate supply of organs as long as the field has been here. They've never been enough organs and tissues to transplant to everyone who might get them. So what that means is for a long time nyeon, 40 years. Now people in medicine have had to make decisions about how to distribute a scarce life-saving expensive resource. Occasionally, you'll hear people say well, what would it be like in America if we had to ration health care and then you hear some funny responses. You'll hear people say well, let's go to England and see what they do. You don't have to go to England to see what they do. All you have to do is actually look at a nice case example like transplant and see what we do. We've had to ration our organs and tissues for decades because there simply aren't enough to go around there not enough donor organs. There are enough available. You've got to make choices about who's going to get them in who is it? And therefore you can see what values what principles come into play in answering the question who's going to get a transplant? So at least you're justified in coming here to either your came for the transplants or you came because you're interested in the rest of the healthcare system or you just got lost What I'd like to do now is go back to the intrinsically interesting areas of transplant. And I'm going to try and approach them under four headings. The first one is how do we get organs and tissues that actually has a little subcategory one is who's a donor and the second is what public policies do you use to get organs and tissues what laws what regulations what do you do? It's very timely there's a hearing in Washington Congressional hearing and at that hearing a family came and said that they felt that the current government policy which prohibits the use of tissues from aborted fetuses to be transplanted was wrong in. This is a couple the husband is a Baptist minister. They have very strong views that abortion is wrong immoral and evil and not to be stopped but they've also had three kids with genetic diseases hereditary diseases that have led them to be in a situation where the only prospect for cures to transplant in tissues that can make the substance that these kids can't make and in fact what happened was They brought these people forward at this Congressional hearing today. One of the congressman who wants to see President Bush and the administration's policy change to allow the use of fetal tissue for transplant. They brought these people forward to show that in fact here where people opposed to abortion but nonetheless willing to accept it as a kind of tragic choice because it could still save potentially save their child's life. Well that little scenario which I assume will be reported on in the papers since everybody has a kind of fascination with this question of abortion and how it ties into the fetal tissue use is exactly the center of what I'm talking about when I say who can donate and what public policies do you want to have at present one group that cannot donate our fetuses who've been electively aborted by law by Band of the federal government. They can't be used their remains and there if you will ruled out as a category of human being whom Be used as a source of tissues. So there have been some decisions made in that particular area come back to this in a second. So one question is how do you get the organs and tissues and under that who can donate them? What policies government policies do we want to put in place that will decide how we get them? The second main theme after who can donate them is, how do you distribute what you've got? Who gets them and that's where I said transplant had lessons that might be of relevance both for understanding life-saving procedures like transplants but also for understanding how we distribute resources generally in our health care System. The third question is who pays and is it worth it after all some of the diseases that we transplant for basically involve trying to rescue or Salvage people who have had organ damage some of which might be prevented we have transplanted alcoholics indeed in Minnesota. We've transplanted people who smoked themselves into heart failure. We've transplanted people who have through lifestyle or other kinds of behavior at least partially exacerbated conditions that might have led to their organ failure actually transplanted a couple of cases where people try to commit suicide By drinking wood alcohol and winding up needing a kidney transplant because they kill off their kidney. So we have a situation in which some might say look. It isn't worth doing this because to some extent it would make more sense to try and prevent some of these problems than to run around trying to repair or replace organs that fail and it costs a lot. Anyway, just to make you feel good. But let me tell you what some of the prices are for these things. They involve something on the order of $35,000 to do a kidney transplant. I would say the average price of a heart transplant today is about $125,000 liver transplant is about $200,000 pancreas transplants, which we do at the University in are actually a world leader in a Pioneer in or probably a hundred fifty to two hundred thousand dollars heart lung and combination transplants that you sometimes read about were children might get multiple organs done. Those can easily exceed $250,000 and there are other costs that basically is the price tag for the surgery and the hospitalization that follows in dealing with any complications that come up but there are further costs because when you get a transplant you have Take drugs to keep that transplant in you for the rest of your life and they're expensive. They can run from ten to twelve thousand dollars a year to to get what's called immunosuppressive drugs drugs that tune your immune system down so that it doesn't attack. What is basically someone else's tissue the only tissue that wouldn't be attacked. It would be if you had a twin a genetically identical twin those parts are interchangeable so to speak but everything else only works if you turn off the body's defenses to the point where it doesn't attack the organ or tissue that you've transplanted in. It's expensive to do that to use the best drugs the ones that work the most it's probably another ten twelve thousand dollars a year. So you're going to build up a very good price tag pretty quickly. If you start paying for a lots of transplants for people, I think last year in the United States. We did in this country about 1700 liver transplants about 1200 heart transplants something on the order of 8,500 kidney transplants something on the order of a thousand pancreas transplants a lot of them done here as a matter of fact in Minnesota and the price tag averaged up is not all that yuge, but it's large per capita. That is the total numbers aren't that great for the solid organs, but they've got some big whopping price tags on them. There were probably 30,000 cornea transplants done and I would estimate 300,000 bone transplants, maybe another 300,000 skin transplants burn patients in that sort of thing. Those aren't nearly as expensive, but they get costly because we do so many so some are high-volume low-cost and More high cost low volume procedures but the transplant bill, you know, it's like Everett Dirksen used to say a billion here a billion there pretty soon. You're talking some real money. It adds up the I don't even remember Everett Dirksen they sounded like I was alive when he was alive, but my father told me that Everett Dirksen used to say where the senator from Illinois for many years ago. Not that many years some years. So to repeat we've got one set of issues. Where do the organs come from a second set? What do you do with them when you get them a third who pays is it worth it? And should we pay spend the money on something else? And the last issue is who should do these procedures? How many senators do you need to do transplants? You want 110 a hundred. Do you want one in every corner? Every Super America has a kind of you know come in buy a pack of cigarettes get your heart replaced when you've had enough of them. How many do you want? How many centers would you want doing these things give you a growth statistic that will show you why this is important in 1987 when Loma Linda did the baby Fae baboon heart transplant. They were the only Center in the country that had done an infant heart transplant at all, whether from a baboon or anything else from a human this year. There are 40 centers that report having done infant heart transplants. So in about three years, we've had an explosion of centers entering into the field of infant heart transplant. The number of centers that have come online to do lung transplants has been growing very very fast. It's not quite as big as that, but it's probably quintuple din the past year. Do we have too many of these centers? How much do you need to how many procedures do you need to do to do them? Well, and let's say you needed a transplant some of you may have gotten a transplant in this room. What do you want to know about the center that does your transplant? Do you have the right to know how many they've done what the outcomes have been whether they have had a lot of experience doing these procedures what sorts of things would we say are minimally necessary to say that a center should be permitted to do these procedures. So where do they come from the organs who gets them? What are you going to do about paying for them and who ought to get to do the installations those seem to me to be the main issues to think about with respect to transplant itself there then as I said, I think there's some public policy lessons for the rest of the healthcare system to draw out a minute. Well, let me go back all the way back to question number one and I'm going to start with who gets the organs the public policy question. And the first question that we have to ask you to do here now, we'll do this in a way that will ensure honesty and integrity in the church. Please close your eyes. Then tell me if you have an organ donor card by raising your hand. Okay, okay. It's a church. Now how many of you think by carrying an organ? A lot of you had them by the way well over half how many of you think that if you have you have to check off on your driver's license? Is that how you've done on the Minnesota license? Huh? I mean if you believe Or let's let's try it this way. How many organs do you think in the state of Minnesota are obtained because of donors cards driver's license check offs. I'd say somewhere between zero and one would probably be about clothes sir. It's an interesting puzzle. Actually. This has direct implications for something else, which is a little bit of a side track that I'll just throw it out here. Maybe we can come back to the discussion actually has implications for living wills and other kinds of advanced directives because what a donor card is is a primitive form of a living will or an advance directive. You're feeling something out that says I want this done if I can't be there to tell you what to do. It says, please donate my organs or don't donate my organs as the case may be so you're giving instructions to others when you can't speak in one case because you're dead which is limiting and in another case because you might be incapacitated. The problem with donor cards is the family and what's the matter with your family? Veto by the family exactly right families generally are nervous about treatment of the body after death many will give sentiments. Like I think they've suffered enough. I don't want them to suffer anymore. It's one thing to say in the abstract. I don't I have no problem with organ donation and I'm willing to be an organ donor and remember any family member is sufficient to veto your wish. Why is that is it legally true? No, legally your card is adequate to base a donation on if you fill it out. It's like a legal document if it gets witness properly its binding we had any lawyers here. Oh good like lawyers. But anyway, if they were here, they would tell you that it's a very it's an adequate document. It's fully satisfactory. You can donate organs in the basis of assigned witness donor cards fully adequate to do that, but There isn't a doctor around or a nurse who's going to want to stand there. The family is saying don't do it and sort of say well it says on the card we can do it. So we're taking out his liver. I mean, it just doesn't happen that way people back away and I'm not sure inappropriately. I actually have some mixed feelings about this because in a way what happens is your dad but your family becomes in a way the patient and they begin to have to deal with your feelings. And if you say you don't want it done then they begin to read be respectful of that. So even though we might in theory say that the donor card is the road to organ donation if we could get more people to sign them we get more organs. In fact, that isn't quite true what happens is you've got to use the donor card as a way to let your relatives know what you want organ donation will go through if a family isn't certain and someone walks in and says look, you know, it's on the driver's license, then the family is very likely to say, okay, so it will work if it's a vehicle to inform. Next of kin about what the person would have wanted, but unless you do that if you just check the driver's license often don't tell anybody and then your relatives are feeling ambivalent about whether they think they want that to happen. It's not going to be the basis of a donation even though legally it is the prep the reality is that ethically if you will Hospital Personnel are not going to go against family wishes and people ask me, how can I get my living will or organ donor card respected? Well, you better not sign it in private. You better have the biggest event when I signed mine. I actually did it at a press conference. Everything I do I do to press no' but this was I mean I made my children come my wife is a press card. I'm having a press conference right here at breakfast know what I did I went and and actually was trying to promote some legislation. So I had Roger Mo the state senate guy and Dave Bishop from Rochester from the house. We were trying to pass a law in couraging people to fill out donor cards. And basically I did it in public I said I'm going to do it and I want it witnessed and everybody to know you don't have to quite go that far but the general point was let people know organ donation in this country has relied on a very particular ethical Foundation the ethical foundation for organ donation and tissue has been from cadaver sources voluntary altruism. That's how we do it. For about the past 30 years if you how many of you were insomnia Acts. Okay. Well, then you'll know what I'm talking about. If you've seen those public service announcements that come on and say make the gift of Life. They're only on from 2 to 6 a.m. I always wanted to do a controlled study to see how many actual organ donors wound up being Insomniac so sort of get that late-night advertising but they do run public service service. That's I talk all the time about the gift of Life your toward that rhetoric make the gift the gift of life and that's great except it's reflecting of particular moral stance about what to do to get organs and tissues from the dead it is saying you ought to make a gift and gift is a very particular ethical term. It says it's voluntary. It's hardly mandatory. It's a little bit. In fact close to being what in philosophy terms are sometimes called supererogatory beyond the Call of Duty. I mean if you make a gift it's a great thing to do is praise worthy, but it's not something that's obligatory on you and it's something that you can decide when you want to do it and have some control over to whom you give the gift to indeed in our system. You can put conditions on your gift. If you look on your driver's license, there's a space that says I want to be a donor conditions and you could say I'd only To donate my lungs or I only want to donate my lungs to the director of the center for biomedical ethics. You could put conditions on your gift because it's a gift no one can control who you give things to that's the status that we take toward gift-giving as it happens. If you said I only want my organs to go to white people which once in a while get set. It wouldn't be taken but that's because the recipient of the gift is not under an obligation to take the gift. You're free to put conditions on I'm free to say I don't want it if that's how you want me to take the gift. And so there is occasional funny ballet that goes on when someone puts on a restriction and sort of said I can't do that. I'm not taking the gift with restrictions. Although you are free to put them on but that's going to mean no donation here. We could and have tried to encourage people to donate by education by publicity campaigns. In fact by giving out brochures at Motor Vehicles. I mean, that's where you go. When you re apply for a license you get pamphlets and things given to you that say, please consider organ donation so forth We don't have enough organs the gap between those in need and the available supply of organs from Recently dad is enormous. There are probably as we speak today 500 people waiting for hearts to be transplanted one child dies every day in the United States because there's no donor of a heart. There are at least three adults who die because they don't get a liver. The waiting list on livers is about 700. It doesn't grow because people keep dying. So it's a number that sort of builds up to about 700 and holds under present criteria because it's a turnover rate. That's pretty rapid. I'd say there are probably some 10,000 people waiting to get a kidney transplant today. They don't die and that's why it's a bigger number because there is kidney dialysis the machine that helps cleanse the blood. Is there as a backup And probably just for Cornelius to take another example, they're probably 10 to 12,000 people who are waiting for those to restore Vision. So there are big lists of people waiting. They could be much bigger and I'll say more about that in a minute, but there are lots of people who died because they can't get Orleans. We rely on people giving organs and we have one of the most interesting ethical issues in front of us when we look at transplant because if we really wanted to get organs we could you know, we do we just take them. We just take them say when you die. We're going to take all your parts and we'll give them to whoever needs them. You could just take them if you really just want to solve the problem of inadequate supply of organs one way to do. It is just take the parts that does exist a little bit in our society lest. You think this is totally Bonkers it exists with respect to autopsy. If you die under mysterious circumstances, then whether you have religious objections or personal taste objections or aesthetic objectives of somebody wants to establish whether you died because of a crime You will get an autopsy the medical examiner has State authority to step in and say basically I own your body and I'm going to do this autopsy on it and then you can have it back for burial or cremation or whatever you're going to do, but the state has recognized the right to step in for the purposes of achieving Justice to take the body from the family. Well the state might step in and say for the purposes of achieving saving of life will take your body and do what we want with it. Take what we want from it and then give it back to you. So it is a possible policy. It isn't one that we've got clearly. We have some strong value beliefs about dealing with dead bodies. And remember they're dead which makes it all the more interesting because what we say is you still should have the right to control what happens to you even passed your death by using a card or some indication of what you would want and we depend upon altruistic giving because that's the other side of it you could pay for them. But you said earlier another obvious public policy choices. You just pay people just say if you want to get organs to come forward offer them $1,000 or $2,000 to $5,000. You can do it in a number of ways you can make contracts and say I give you $5,000 now and I'll take your kidney later. Although that makes people nervous you can say you get the money cash on delivery. It goes to Next of Kin you could do tax rebates and there are proposals around to give things like funeral expenses pay for the funeral. You could try to put Financial incentives in place to encourage donation. Let me review with you where we are here. We're still on the first issue and we're talking about who is an organ donor. And what I've tried to point out to you is that there are a number of possible public policy options that could be taken to get organs and tissues from dead bodies and yet what we have seized upon is a particular policy gift-giving by altruistic donation clearly because we have some ethical views about what is right and appropriate. We don't allow markets or pay back. We have a law that prohibits it right. Now. You'd have to change the federal law because there's a ban on sale of cadaver organs and tissues and we certainly don't have any effort underway to let the state take organs although some countries do Austrian Belgium have so-called presumed consent laws on the books that let doctors come in at time of death and remove organs. There's at least two countries that I know of Brazil and India that operate with markets you can buy and sell organs legally. And in fact to give you the completion of this public policy thing in India, you don't have to be dead. It's legal to sell kidneys and indeed to sell a cornea from your eye while alive so that they have moved to a policy that except sale not only is a public policy with respect to cadaver donation. But also with respect to live donation that we have even more restrictions on live donation than the ones that apply to cadaver donation. Not only do we talk about altruism and voluntariness when we move to the realm of live donation in this country. If I want to give you my kidney just you can carry it around or cook it or do whatever you want with it. But if I want to give it to you that I have to be assessed as competent and I must make sure that whoever's going to remove it from Has to make sure that I am in fact doing so with full informed consent and there will be a whole rigmarole that I'm put through to understand my competency and to make sure that I'm giving free consent to this the University of Minnesota happens to be one of the centers in the around the world which relies heavily on live donors about half of the transplants. We do in the kidney area and some of the pancreas transplants come you can move a piece of the pancreas come from living donors. And in fact, we're doing something which is even further out on the ethical Edge so to speak and that is we will do transplants sometimes from live donors to recipients when they're not biologically related most of the centers that do live transplants have another condition. That is the people be biologically related partly to enhance the chance of the transplant working. The closer you are biologically less that medicine you need to keep the organ from rejecting but If you have skill with the drugs and you think you can use them to keep the bodies rejection mechanism the attack on the transplanted organ tuned down, then you might be willing to try people who aren't even related at all. And that's where we were at in Minnesota. It's partly because we've been doing it a long time that the docs feel confident that they can actually overcome big biological differences between people we've actually gone across races and gone to any kind of biological combination can imagine so we will in fact do live unrelated donors, but it obviously raises an important ethics question some people criticize The Stance because they say anyone who is willing to give up an organ like a kidney a piece of their pancreas some of you read about these operations at Chicago where moms have given a piece of their liver to their children. That's a live related donor situation. But anybody who would do it who's not related is a nut Simply by definition they must be goofy. And then Noggin who is going to run around and say well, you know, nothing to do today think I'll Whip over the old you and freely let someone saw one of my kidneys to help somebody to a lot of people the notion of altruistic donation from a live person to undergo a surgical procedure which has a small but nonetheless quantifiable risk of dying and the surgery is no fun. And you are going to be in the hospital well for somebody that you're not even related to strikes them as obvious that this can't be a competent informed consent and they think the that practice should stop. I've actually met I we had a couple not so long ago at the University divorced in the wife agreed to give no, excuse me, the husband agreed to give the wife a kidney even though they had gotten divorced and we're not biologically related or related by emotional ties. And I had a chat with him at one point. He said well, she's got everything else of mine. It's true. It's true. It's true true story. There are people who would do it if the right emotional feelings exist. He clearly felt that he wanted that mother to be there for his kids and he was quite willing to donate that kidney, even though they divorced and they clearly weren't getting along and with that that's an example of an unrelated not emotionally related any longer not biologically related situation. A lot of centers wouldn't get near that just wouldn't get near that. So there's another area where ethical differences are showing up in India strangers can sell their parts to the highest bidder. In fact the bids don't get that high because India is a pretty poor country and you find people's undergoing the procedure for the equivalent of what to us would be $10 $20, but it goes on who can donate well a couple of strategies have come up certainly driven by the shortage of organs and tissues if we had more of them. I'm sure the suggestions wouldn't be coming up one place that people have turned is to say let's think about changing who it is that can donate. Let's think about changing the definition of death. There are proposals around that say look if you're permanently unconscious like a Nancy Cruzan or maybe a Helga Langley over here at Hennepin County Hospital the woman you've heard about who's involved in this fight about not wanting to stop or care in the hospital saying there's no point in going on. She's in a permanent coma she is unconscious and every one of her doctors agrees that it will be impossible for her and Nancy Cruzan to regain consciousness. Well a number of people say look if I'm permanently unconscious then don't go through the nicety of making my brain totally stopped as a Prelude to taking my organs. It's not necessary. I don't care. I'm not going to be there. Why don't you expand the definition of death to include not only permanent cessation of all brain function, but permanently unconscious if you know who they are then use them as organ donors to and I can tell you that there are people who certainly would in fact say I would do that. I mean that they make themselves available to have their organs or tissues removed only with a diagnosis of permanent coma so some effort is some discussions underway to say well what I mean, we agree that you're dead when your brain has stopped and it's not going to come back but it's not the whole brain that counts what counts in terms of what death is is consciousness and if you've lost that capacity than even if little bits of your brain are still working or some small area brain is still working. It's as good as dead. That's one idea another. I got a not an idea. I think we're going to see come to pass any time real fast, but it's an idea we and in the discussion we can talk a little bit more about why that is the second idea. Let's use animals. The baby Fae baboon heart transplant was an attempt to find an alternative source of organs. It was an attempt to use these drugs. I've talked about to not only cross between biological differences between people but to say maybe we could even turn off the defensive response that might happen. If we put in animal tissue into our bodies the major problem with the use of animals is first and foremost. Is it ethical to kill animals to take their parts particularly animals like primates which many people would say, well perhaps not of equivalent value in whatever sense that means to human life is are still nonetheless worthy of some standing and respect in their own, right? I keep thinking some of you may have seen this been some reports come out the newspaper lately about sign language and animals and whether they can really sign. I keep the the saying no, I don't want to donate. Thank you. No, no, no don't take me out to Loma Linda Teach me the word for I don't give consent and that's right. Yeah. So one issue is should the animals be used primates be used to primates Jim's by the way almost close to extinction of Jane Goodall. We're here in as she's told me many times can't imagine killing off chimps to take out their organs when they're in fact almost on the brink of Extinction these days just seems immoral to use them in that fashion wipe them out people may be made nervous by having an animal part. Maybe they wouldn't be comfortable about taking a baboon heart or a chimpanzee liver in that sort of thing. And I think there are some issues there. Although I have to tell you from what I've seen around the hospital if you offer somebody almost anything as a way to stay alive including a bad In heart they will think about it some but they won't think about it long. They'll take it for the most part. There are few people who want the most people would and they'll deal with the they'll expect to have some post follow-up psychological counseling but they still would rather be here to have it. So most would take it begun to do is to look toward another animal. The animal of choice these days. It's the pig as I sometimes think of it a pig is kind of a person horizontal. If you look at Pig parts, and I had to do this when I was back in my graduate biology days pigs pigs way about a hundred fifty to two hundred fifty pounds. You get some real big pigs if you want, but you can get a nice size range. If you put a baboon heart into baby Fae the baboon heart is going to grow big enough to support a 40-pound baboon baby Fae assuming he's going to get a lot bigger and there's going to be a problem down the road because the heart is not going to be big enough for that is not true for pig Parts. They're the right size. They're biologically more distant, but they are about the right size. You need something that's going to fit and you need something that's going to basically have about the same physiological output as human organs. And it looks like the the pig is about right. You don't have the same ethical problems in terms of people having reservations about killing pigs not to say people aren't opposed to the killing of pigs or other animals to eat meat but the number of pigs you'd kill to create Parts would pale by comparison with a number that are killed to create meet. So you'd be in a different sort of and they're certainly not extinct and they can be grown relatively easy. We've got a lot of them running around in this state so Some of the arguments about scarcity shortage and even if you will the moral standing of the animals seem to shift and I think that makes the Pig more attractive aside from its physiological properties. So we are at basically engaging now and some basic research that will teach us how to radiate the pig heart do some genetic engineering on the pig heart to try and take out some elements that would trigger biological attack and then put it into the recipient because the other thing you can do if you've got an animal and you know, when you're going to kill it to take Parts as you can prepare the donor which happily enough they can't do to you that is even if you're going to be an organ donor. We kind of have to take you the way you are when you demise but a pig you can plan for its demise and therefore you can plan on handling its parts and trying to make them chemically better to put in so a second strategy is let's go to the animals third strategy. Let's look around and see if there are other human sources that were not using that's where we get to the fetal tissue and the fetuses and even babies born with most of their brain missing so-called and cephalic babies. That's an attempt to say maybe there are categories out there of human beings that we ought to allow into the pool of potential organ donors. All I'm going to say just in the interest of time in terms of the fetal tissue donors is that there are clearly ethical problems for those who see a connection between complicity and abortion by those who would use fetal parts that came from elective abortions and legitimation of the practice of abortion. Those who might say, well if you do do that, you're going to make it more acceptable to have an abortion because then people will begin to think that something good can come out of that act and therefore there may be a kind of moral legitimacy conferred that is inappropriate. And I think in fact, those are the reasons that we have a ban on right now, it's the complicity argument and the legitimation argument that basically is the source of the stance that says no you can't use them but you could change that. It's not going to do you a lot of good in terms of solid organs and hearts and lungs because the fetuses are too small just as with the baboon's it's it doesn't work, but you could do more. It's plans to other fetuses and you might even be able to do more transplants to newborn children the baby Fae to remember I told you there's at least one newborn a day that dies for want of a heart. You might be able to move somewhere in that type of matchup and then tissues become transplantable to so that's a tough subject. How many of you remember the case in Chicago of the little boy who needed a bone marrow transplant and was Bazi and he had a father who had left and remarried and had some kids with another woman and the mom wanted the bone marrow from those other kids to be tested to see if it was compatible with her child because the best chance of finding a compatible donors to look first in the bone marrow case in near relatives. And so they went to court to compel the testing of the bone marrow in the little boy. In the court threw it out and said you can't force someone to be a tissue donor, but you could change that. After a bone marrow donation isn't all that invasive procedures not all that dangerous your sore comes out of your hip probably stay overnight in the hospital and have a kind of sore hip for a couple of days. I don't know of anybody who's died yet donating bone marrow. It's a possibility but it hasn't happened in thousands of donations. You could have court-ordered bone marrow donation and I did maybe a policy stance to move toward down the road in that particular area of transplantation. All right, we've got so far we've got through about 10% of our talk and now we're going to do the rest of it much faster. The next thing I want to talk to you about though. Is this notion of them gets it this I don't have to spend such a long time because I've set up the scarcity issue for you and the demand issue the philosophers and theologians and the lawyers when they get into the argument about who should live and who should die what they tend to do is focus in on the kind of classic moral dilemma in transplant if we picked up a bioethics book, Man, I don't recommend it. But if you did you would see cases in there that say the following there is one liver available today at the University of Minnesota. And there are five people who might get it. There is the Minister of a church and there's a welfare mom and there is a journalist and there is a biochemist and there's a farmer and so when some of them are old and some are young and some are black and some are white and who do you think should get the organ and that would be the kind of straight up ethics dilemma that these books would kind of and then you move to considerations of theories of fairness and Justice and you'd say the most deserving person or the person who lived the longest with it or the person who supports other people if they have children, is it a mother the person who can pay for it or in a sense? Somehow merits it more the person who needs it the most who's closest to being dead give it to them. Those questions are all very interesting and people usually presume that that must be with the ethics action is the transplant field, but it isn't the reality of transplant and here again, I think there are lessons for other things in health care that you all need to understand. But the reality of transplant is, you know, what on any given day the chance of two people anywhere in the country competing for the exact same heart or liver or lung. It's pretty small. Why and actually if you've been awake this long you'll know why because I've mentioned some of the factors already one is matching size the first consideration when someone gets makes a donation and a heart is available. How big is it when the first thing look you can't give it to any child of comes from adults too big. You can't put it in big. Let's say it's comes from a relatively small woman. If you have a relatively large man, it won't be big enough. It won't fit properly into the chest. The first consideration of where the organ is going is size match. The next consideration is blood type because blood type is something that you simply can't control differences on and if there's too big a blood type difference, it won't work. The organ will be rejected. So you have to match that third for most organs you have to match what's called tissue type that is just like blood has its own special markers that identified. So do actually the body's immune cells and they will attack viciously something that is very different from what the host has. So you have to watch that and match it to by the time you get through sighs blood type tissue type and distance that is how far is the organ from where the recipient is if somebody's Thousand miles away and someone's a hundred feet away. You can guess where the organ is going to head. You've pretty much decided who's going to get a transplant with that organ. There isn't a whole lot of Ethics to be done. I mean weirdly enough, I spent a lot of time hanging around a number of transplant centers waiting for somebody to ask me some big advice about lawyers and ministers and Welfare mothers and what to do and no one ever shows. Well not never but rarely does anyone show up because most of the time they know where the organ is headed. It's biology drives the system the biggest cut that is made about who's considered eligible for transplant his nationality, why are plenty of people dying all over the world from organ failure their kidneys fail their hearts fail their livers fail their pancreas is fail. We do not attempt to bring them here to get them on waiting lists so that we can transplant them. could You could go find them. They don't do transplants and chawed and I and in Bangladesh and in Niger, they don't have those centers there if we wanted to and if we believed a certain premise that says all human life is of equal value, then we could make a decision to say we'd better recruit these people and list ourselves along with paraguayans and bolivians and people from the Sudan all of whom have organ failure just like us from different causes and reasons and put them on our list we could make our lists not so that there were 500 people waiting today for a heart transplant. We could build a list of the 50,000 people are waiting today, but we don't clearly one of the things we've decided to do whether we want to admit it or not. Is it nationality counts? You can see it play out in such things as when an illegal alien shows up in California in heart failure. There are some big debates about whether that person is going to get on a California hospital waiting list to be sent back to Mexico. Sometimes we get very proud if we let a few non-americans in. But basically it's an America's first policy with a few luck, you know, if President Bush wander somewhere and find some little kid that needs a transplant brings them back here. Everybody says, that's great. And I guess it is great except that there are plenty more people who you could be lugging in here or flying in here or doing something to bring in here and pay for their transplants as well that we don't but that has nothing to do with the values of medical doctors has to do with your values and my values has to do with this decision that we're going to transplant our own first. We're going to look out for our community first go look out for the nation first, then we'll see what's left to share. second value very few people. Let's say you woke up today very few people wake up and say, you know what? My pancreas is failing. A few doctors here might wake up and say that couple of nurses, but most people don't know. There are some people who find out that their pancreas has failed them when they show up in the emergency room and they're dead. If you don't have a doctor you were going to have a hard time getting a transplant. Why because you need to be diagnosed as being an organ failure. I have seen not so much in Minnesota. But when I was back in New York the first time some people knew they had heart failure was when they were in the morgue. And that's because they have no health insurance. They had no doctor at all and nobody ever diagnosed them as needing an organ or tissue for that could work for tissue transplants to especially for things like pancreas. You need a pretty Savvy doctor because that's a relatively new procedure. A lot of dogs might not even know you could get a pancreas transplant or heart lung or something like that. You need to have a primary care person who can refer you into the make a diagnosis of what you need and then put you through the system. Is that fair in our system? Well not hardly. There's at least 30 million people running around them no health insurance so we can presume that they don't have many doctors they may have some but they're going to get diagnosed late and they're going to be found out late and their Primary Care is not very good in all likelihood. I'm not saying they don't get it at all. But the chances of them getting good Primary Care is pretty bad. Similarly, if you don't have a good doctor one who's competent and knows that transplants could be done for certain kinds of conditions and you won't get referred on either and that's a problem too. Although less of one the second major cut on who gets a transplant oddly enough is access to primary care. If you have Primary Care you get diagnosed fast and you get kicked into the transplant waiting list and things start to happen. If you don't have good Primary Care, no one's going to know that you might have been salvageable by a transplant weirdly, even though I set this up in the third area is prevention versus transplant Primary Care is a critical determinant of high-tech expensive rescue medicine because if you ain't got it, you're much less likely to get that high tech stuff and that's true. Not only for transplants. It's true for everything. Sometimes you'll hear people say, you know, what we should do in this country. Just stop throwing all this money into high technology and spend more of a non-primary here. And that's something that in fact, I have some sympathy with except it has some bad implications. You know what those are you spend a lot of money in primary care, you know what will happen you find more people who need transplants. Now you can just spend the money on primary care and tell them they can't get transplants. But that's a sort of weird version of primary care because then what you're saying is you can have primary care as long as you're healthy. And then if you need something very expensive, you can't get any more. So do you want the primary care or not? I mean it's sort of huh the third issue in the last one. I'll mention on who gets Oregon's is can you pay because the other side of the coin is we basically are Distributing organs not only by who gets in on admission by referral and what their nationality is and so forth, but we're keeping a close eye on do you have insurance? The first test that we do on people when they get referred to us for transplants of the pancreas or liver and this is true at all transplant center. So I'm not just knocking the Minnesota, but we do do a wallet biopsy. We go in there and we say do you have insurance? If you don't it doesn't in Minnesota, it doesn't mean we would throw you out although in some states. It does automatic. You're gone. But it certainly means that we're going to start to put the pressure on for you to raise that money have a bake sale. A lot of bake sale Car Wash. You're going to start to get pressured to raise funds. Well, that means that there is definitely advantage to having Insurance in order to get on the waiting list not because it's a medical need but it definitely is a fiscal need because there is a fear of getting the hospital stuck with these big bills. And if you do too many of these procedures, you're going to bankrupt the hospital so people look for cash customers and that is the other value that plays itself out. Nothing to do with surgeons values. Nothing to do with anything. That's kind of impose medically. It's sort of society saying well, okay you can do it but let's keep it to those who can pay well who gets transplanted out of that set of values you find the upper class doing better than the lower class you find whites doing better than blacks on access and you can see a distribution. That's not a surprise if nationality good primary care and ability to pay or the three driving values on who gets transplanted not the surgeon saying, well you are more worthy than she is to live which I've said rarely happens. It's those other values that drive it then in fact, you're going to see ask you toward the upper classes. And that's in fact who does get most of the transplants today in our society the last two issues I mentioned I've taken you through the public policy ones and the who's a donor in terms of how to get organs. I've talked to you some now about allocation and distribution of what we get and tried to make it clear that while you might suspect that there's a plot on with the doctors meet every morning and pick out who lives and who dies. It doesn't work. That way. We actually meet de facto in the legislature make all sorts of decisions about who lives and who dies but it's us know that old Pogo thing. It's us we make all the decisions all the key decisions about access to transplant are done at the public policy level and not done in the Board Room at the University of Minnesota at the Mayo Clinic or in the Doctors Lounge for the most part. Those people have the happy privilege of not having to worry about it too much. Could size and biology pretty much tell them who they're going to take off their list, but their lists are relatively short list of people waiting. Why because we've made a whole bunch of tacit or if you will some quiet judgments about who's going to be able to be on that list. You can make a much bigger and make the whole thing a lot more miserable, but that's not something doctors can do that's something we would have to decide to do. Do we have too many transplant centers who should get to do them? Yes, we do have time to transplant centers and this can be a short part of the discussion simply because it's pretty clear that the United States has about a hundred and ninety heart transplant programs running now the available supply of hearts out there means that that would give every heart transplant center 10. The surgeon themselves have said a minimum standard for doing heart transplants of 20 per year as necessary to keep up your skills. What's it is nothing else to talk about there's too many programs out there people move toward them for reasons of prestige. They have this horrible tradition of training people to do these procedures and then they let them out into the world. And guess what they want to keep doing the procedure. That's a problem. They go out and set up their own programs. It's horrible lie, they wandered to other parts of the country and make new centers. So there are definitely too many programs too many people for the supply of organs that's currently available. There's just too many of them. We don't have enough organs to do them efficiently oddly enough. There's no control low over who can set up a transplant program. There are some controls in place, which I won't bother you with now but the long and short of it is if I want to set up a transplant program in Tampa, Florida tomorrow to do pancreas transplants. All I need is dr. Sutherland and assign And I can do it. There aren't many restrictions on where I can go and and who can set it up and what their qualifications are. I will give you one statistic that will show you what I mean the survival rate at five years at the University of Minnesota heart transplants about 85% the survival rate for a transplant program that I'm pretty well acquainted with in California that I don't choose to name for fear of getting sued is about 28% that leads me to the last thing I asked about would you like to know that? Well, I bet you would and so would I be if you were going to get a transplant at this place in California, this gets us into the sad little tragedy of American Health Care. So have them tragic American Healthcare is we don't know much about outcomes. We don't know much about what works, you know more about your used car purchase because it has a sticker on the side of the card then you do about your hospital or your doctor when people say how did things get so expensive transplant is a nice little case study because the variations in outcomes that I gave you in terms of 28 percent to 85 percent can be matched in other organ areas that is their wide variations on survival and there are wide variations on prices. Why? An excellent question and no one knows because the pressure has not been there to say we've got to get more of a link between paying for it and making the prices known and making the outcomes known Health Care in general has been able to sort of slide along for a long time without being pressured by its consumers to say how well its products work and actually the same more about what its prices are. What's a fair price for heart transplant. I have no idea but nobody else does either Where do those numbers come from that I told you what the costs were? Well there are which charged are they real? I mean do they correspond to anything hard to know so that's the last area where we need to see some pressure and public policy shift its in terms of saying well, why do we pay what we do? Maybe we are paying fairly. I mean maybe really does cost 230,000 optional liver transplant. I have no idea. We have taken a teeny step in that direction Minnesota this year. We got a bill enacted to set up a committee which is going to insist on outcome Data before anybody pays for transplants under the Medicaid Program. It's going to say you have to tell us Hospital how you do before will pay it's not that we won't pay but we want to see some numbers and I'm going to try and make that committee next year say, I want to see some prices. And then you can distribute my organs all around the state after they kill me. But that's a first is it a good idea to do it relative to what the rest of the healthcare system looks like absolutely some of my doctor friends say, well aren't that transplant thing? We know you're not going to stop there. You're going to be talking about that. That's a camel's nose talking about these outcome things and prices and I say, oh no, it really isn't but it is it is it's absolutely the way to go. And in fact, I think reasonable Health Care Providers and administrators would agree that that is the way we must go is to start to make the tie between outcome product and price and performance. It isn't there the question is it worth it. Import depends on does it work in part depends on will why is the price what it is in both of those critical variables? If you just look at transplant, it's hard to say weirdly since I've been dumping on transplant here for a while. They have more information about it in terms of working and prices than almost any other procedure that's out there. They know better. I mean, they actually have better data in the transplant feel they can say it's 28 percent to 85 percent. They may not be too eager to tell you but those numbers exist because we've been watching them for a long time. So what I tried to do with you aside from test your endurance is to see whether you can come to understand that most of the value questions that haunt the field of transplant and most of the lessons that you draw out of transplant for the rest of the Healthcare System actually aren't quite heroic people in white coats making value judgments that basically the rest of us have to live with although that's a popular image to have but it's false. Questions about how many organs we have come from decisions about who we decide can be donors and what public policy we put in place. I mean all of us questions about who gets them or basically driven in the in the most important Way by decisions that we all make about whether nationality counts our ability to pay cats or how good's the primary care. And decisions about is it worth it are driven by our indifference or vicissitude about not asking questions. Like what is it cost this who lives who dies who does better who does worse how good a surgeon are you? Seven asked so the system sort of tottered along you can almost charge whatever it wants and some ways what if I said liver transplants cost $500,000. I don't know. I guess they do who knows who knows what they cost. Well, we sure don't because we haven't asked so that's what I hope you're in a better position to do now is to at least ask the questions and I'll come up with the same answers. May still have public policy fights, but I hope I tried to point you in some directions where you would be in a position now to ask some questions. Thanks.

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