No Easy Answers in Bioethics Podcast
Organ Donation Models: Eijkholt and Fleck - Episode 8
April 6, 2018
What kinds of organ donation models exist around the world, and how effective are those models? This episode on organ donation models features Center Assistant Professor Dr. Marleen Eijkholt and Center Professor Dr. Len Fleck. Combining their clinical ethics and health policy expertise, they sat down together to discuss ethical issues within current organ donation models, stemming from recent legislation passed in the Netherlands to implement an opt-out system of organ donation. Drs. Fleck and Eijkholt discuss positive and negative aspects of opt-out and opt-in systems, also drawing from other countries around the world. Additionally they discuss reasons why individuals may choose not to be organ donors, and the types of situations that can emerge at the bedside when grieving individuals do not want their loved one’s organs to be donated.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.
Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. Today’s episode features Center faculty members Leonard Fleck and Marleen Eijkholt. They sat down together to discuss ethical issues within current organ donation models, stemming from the recent legislation passed in the Netherlands to implement an opt-out system of organ donation. Drs. Fleck and Eijkholt discuss opt-out and opt-in systems, also drawing from other countries around the world. They also discuss reasons why individuals may choose not to be organ donors, and the types of situations that can emerge at the bedside when grieving individuals do not want their loved one’s organs to be donated.
Len Fleck: Hello everyone, I'm Len Fleck from the Center for Ethics here at Michigan State University, and I'd like to introduce Marleen.
Marleen Eijkholt: I'm Marleen Eijkholt, I am part of the Center for Ethics and Humanities in the Life Sciences too. Normally I'm located in Grand Rapids, and I'm an assistant professor of clinical neuroethics. And I'm sitting here with Dr. Fleck, who just introduced himself, the reason being is that, you can hear in my accent, I'm not from here. I was originally born in the Netherlands, and a couple of weeks ago the Netherlands introduced a change in the organ donation system. And currently we have an opt-in system, and the legislator adopted the legislation to move to an opt-out system. And this legislation will be fully implemented and introduced only in 2020, but talking about this change in legislation with Dr. Fleck, we came from quite some different perspectives. And I think we, yeah, we're, we'd like to talk a little bit about opt-in, opt-out, organ procurement systems and so forth. And what I found very interesting is that, and I don't want to put words in your mouth, Len, or Dr. Fleck, what's the best way of talking to you, but, um, it sounded like you thought that the opt-out was a pretty good idea, and I had a little bit more reservations about this. And I think we're both pretty rational and reasonable people, so it sounds like, yeah there isn't a uniform agreement on what is the best system for getting organs. So maybe should start, and why should we get organs in the first place, Len?
LF: Well, the biggest problem of course, is that right now in the United States there are about 140,000 people who are on waiting lists for major organ transplants. So we're talking about heart transplants, lung transplants, liver, pancreas, kidneys for the most part. Kidneys would be the largest single number, where there's a need, and as things are right now there's about 8,000 individuals who are on that transplant list who will die each year for lack of an organ transplant. And so this raises the question of well, are we doing enough by way of securing transplantable organs? And so we've already mentioned that there's this difference between an opt-in approach to securing transplantable organs, and an opt-out approach. And basically, just so everyone understands the difference, the opt-in approach is what we have in the United States. That essentially means that individuals would, for example, have to sign a driver’s license or some other document like that, something very simple, in effect saying, “I'm willing to be an organ donor. If I end up being in serious automobile accident or suffering some other kind of profound brain injury that would leave me in what is colloquially referred to as a brain dead state, then I'd be willing to donate my organs to others who might need them.” The problem with opt-in is that even though roughly 80 or 90 percent of Americans say they would be willing to donate their organs, in fact roughly about 40 percent of Americans have actually signed a driver’s license saying that they are available as an organ donor. And without signing anything, if they were to end up in that situation then it would be up to a family member or some other decision maker such as that to actually make a decision on behalf of that individual. Opt-out is the opposite. And what that means in practice is that individuals-- the assumption is that all of us are willing to be organ donors, perhaps in part because if we had the need to be an organ recipient, we would want to know that there were organs available to save our lives. And with the opt-out system, if I have some sort of serious reservation about being willing to donate organs, well I would have the right to sign a document, back of my driver’s license or something like that, saying that I don't want to donate my organs for whatever reason. You don't have to give a reason, you just have to say, “I don't want to donate my organs for any reason at all.” Now, the issue is, I mean there's an empirical question here, how effective are these systems, and in Europe a number of countries have adopted the opt-out system. It has led to some increase in supply of transplantable organs. And that increases seems to be somewhere between 5 and 25 percent, it varies a lot. But obviously as you and I will discuss, there are ethics issues that might be raised with regard to making a choice here. Why do you think opt-in is the better way to go?
ME: Well, thank you for, you know, explaining these models. And just to add one little part, so we're talking about models that are available to increase the amount of organs available, and of course there is also the, a model in which you could sell your organs, right. And some, like Iran has a regulated market, there are many countries out-- well there are some countries out in the world where illegal sales of organs is also available. But we're not talking about these countries. So your question is really why do I think that an opt-out model is problematic or an opt-in model is better. I find the whole question very interesting. So you mentioned a couple of countries in Europe have opt-out models and they have seen an increase in availability of organs. I think there are a couple of problems with an opt-out model. And one of the major things that I'm thinking about is the presumption that organs are basically property of everyone. So the idea is if you die, the basic presumption is that you give up your organs. And that, yeah, that therefore the organs are sort of property of everyone unless you say, "I don't want to give up my organs." You know, there is a presumption that they are shared material. And I feel that that is infringing on an assumption that my body parts are mine. And I'm not saying that this is necessarily unjustified, but I do think that there is a little bit of a hurdle and an obstacle that we need to really be more explicit about, that, what it means to give up your organs. So, in the Netherlands when they, you know the legislative history so far, it has been quite a struggle because of individuals who are saying on the one hand, you know, from a point of view of solidarity and shared resources access to healthcare, we should have an opt-out model. But on the other hand there are people who are saying well, if your body is yours, why should we automatically give them up? And come from the perspective that you have to opt-out instead of opt-in. So one of the premises here as well is that systems switch to an opt-out system because they feel that the education fails in an opt-in system. So the idea is that everyone's organs are their own, and if we can, as long as we can identify and educate people enough that giving up your organs is a good enough thing, then people would opt-in. But then the premise is that people are pretty lazy, and therefore not signing up, or maybe that they cannot be nudged strongly enough, but I believe that this is somewhat of a false assumption because it presumes that every rational person wants to give up their organs. And I don't think that that is necessarily, should necessarily be the case.
LF: Okay, now first of all I want to be careful to say that I am a strong supporter of respect for patient autonomy, and so under an opt-in system obviously individuals have to make an autonomous choice to sign their driver’s license and say, in effect, “I'm willing to give up my organs.” But under an opt-out system, it isn't the case that the state can simply take your organs, so to speak, against your will. It's still an autonomous system, it's just that the choice that somebody has to make is the choice to exit the system rather than to be included in the system. And so the burden of making that choice is placed upon those individuals who for whatever reason just strongly feel that they don't want to be organ donors, okay? So in that respect, the two systems are both, to my mind, respectful of the autonomy of those individuals. Now here's where I see a problem that I think we need to talk about, and that many people may not be aware of. Even when individuals have signed the back of their driver’s license and said, “I want to be an organ donor,” it's still common practice, typically done, that no one is actually, no physician, no transplant team is going to take those organs without first talking to family members or somebody who is a representative of that patient, to in effect get their permission to take those organs. Now, I kind of find that problematic because it seems to me that if we're about respecting patient autonomy, and if an individual has said, “I'm willing to donate my organs,” then my family should not be willing, or should not have permission to veto the choice that I've made.
ME: Yeah that's an interesting question. So I think what you're saying is that actually neither the opt-in system or the opt-out system are often pure, in a sense of a pure opt-out, pure opt-in. So in a lot of these models we have some family factor that plays into, um, into the system. So in an opt-in system, even if I, for example—and I am an organ donor—I have opted in, imagine my mom would say after, you know, if I would be lying on the table declared dead, my mom would say, “Marleen signed the form but she actually said she doesn't longer want to donate, and I don't think that she wanted to donate.” Then my mom gets some power in an opt-in system. In an opt-out system it can be the same thing. So I, for example, have not opted out, but my mother says, “Marleen didn't want to donate her organs,” then the providers would say well we'll follow the mother. And I believe that you're saying that that is somewhat problematic, am I understanding that?
LF: Yeah, yes that's correct. I, it seems problematic to me because in some sense it's going against the will that I've expressed. Now I understand of course people can change their minds, and you know we sign our driver’s licenses here, at least in the state of Michigan, like every four years or so, and so each time you would have an opportunity to make a different choice if you chose to make a different choice. In theory I suppose individuals could change their minds during that four-year interval, and if so it seems to me it would then be their responsibility to communicate that fact to family members so should they end up in a automobile or motorcycle accident or suffer some kind of profound head injury that would put them in that situation, family would know, yep, even though he signed his driver’s license, in fact he indicated to us just a couple years ago that he thought that that wasn't such a great idea, and he felt awkward or ashamed of having to not sign it in front of somebody at the driver’s license office. And so he signed it under a kind of semi-coercion. Okay, I can understand that. But then it is their responsibility to communicate that to somebody who would then make those decisions.
ME: Yeah, I, it is a very interesting problem to think about because of course family objections might not just be because they thought I changed my mind. You can have all sorts of family situations be active in the clinical setting that I see as a clinical ethicist. For example, grief. So individuals say, oh, I'm not ready to let my loved one go, and that's why they don't want to donate their organs. As a little side note, a lot of people might not know that for donation after death by neurological criteria, so by brain death, actually they'll keep the body warm. And that might for some people be a very challenging thing to say goodbye to a loved one while their body is warm, and breathing, if you like, by the ventilator. So it might be that a family member says you know, no, I am too upset, you cannot take their organs without respecting my wishes. There might be other reasons. So for example the providers do not want to enter into a fight, for example, with my mom. So if my mom says I don't want you to take my organs, um, yes she is standing in the way of my autonomous wishes, but the provider might say, you know, I'm just going to do what Marleen's mother says because I don't want to enter a fight with her. I think that it's true that it means not respecting autonomy, but that is really from a perspective where autonomy is very individual-centered. And if you take like a more relational concept of autonomy in which actually it's not just the individual that matters, but the whole family that matters, you can still say it's acceptable for family members to override the wishes of an individual. Although it's of course far from ideal. What I think the most crucial point in these, in these complying with family wishes is, is that it supports somewhat of trust in the system. If you get a very upset, aggressive grieving family that doesn't want the individual to donate, and you're taking out their organs anyway, so you're kind of pushing out the family from the bedside and saying, listen, your loved one has taken, has signed up to the register, we're going to take it regardless of what you're saying, you kind of get to a struggle where individuals will lose trust in the system. So I think that this is one of the major concerns why opt-in or opt-out systems are not as hard-lined as we often take them to be. And I, to some extent, I feel that there is a very big value in maintaining public trust in the organ transplantation system. Which is another reason why I believe that an opt-out system wouldn't work everywhere. In the Netherlands it probably will work because there is a big trust between the healthcare professionals, the government, and the citizens, so very few people will doubt, I hope, that their organs will be taken out prematurely. So in that way the system of an opt-out system in the Netherlands and in most of Europe will likely work. Would I believe that it might not necessarily work here. But, so maintaining trust in the system I think is a big argument and it's probably also a big argument, yeah, for, you know, a softer opt-out or a softer opt-in system. So public trust for me is kind of a practical but also an important consideration. What do you think about trust, Len?
LF: Oh, I think that's important as well. Now there are some, one of the things, we haven't mentioned, for example, Spain. Spain is taken as a kind of prime example of a system that is working extraordinarily well. Technically they have an opt-out system, but it's a very soft kind of opt-out. So they will always have a conversation with the family, but apparently the conversations that they have are had what you might call very, very skillfully. And in such a way that they elicit the autonomous support for doing, or for taking those organs for transplantation purposes. In that sense they are both building trust and respecting the autonomy of that family. One of the issues that has sometimes been raises is that - and again this is a kind of an empirical question, there's some rough empirical research out there to support this, but the concern is that some number of, some family members who have said no, I won't allow for a transplant to take place, have had regrets after the fact. They sort of realized, you know, that was a kind of hasty decision. If I think about it very hard I realize that there were six or seven other people whose lives could have been saved had I been willing to donate the organs of my loved one here. And I just, I acted on too emotional a basis, I didn't really think that through, I'm really sorry about that. And so that's one of the sort of side effects that can happen if individuals respond, in what is a crisis situation, too emotionally. So apparently the Spanish are very good at addressing the kind of emotional response that might result in a negative choice by a family. And getting them to think about that somewhat more carefully and understand what the need is and why it's important that they consider their choices very, very carefully.
ME: So just to pick up on that, I think it's um, that comment is not necessarily related to an opt-in or an opt-out system. So it's in both systems. You know where you allow family members to override the patient's or the deceased person's wishes. When I left the Netherlands we talked a lot about Spain, and the success of Spain. And since then, a lot of, a lot more countries in Europe have adopted the opt-out system. And what is interesting to note is that back in the days we always said, actually the success of the Spain model depends on these coordinators and these communicators. And actually empirically that has been shown to be the case. So in some countries, and I cannot completely remember which one, but I think, and these are not European, but Chile and Brazil chose to go to an opt-out system and then actually there was no increase in organs because of the family vetoes. And I think there is a couple of countries in Europe too that decided to go for an opt-out system, but didn't have these communicators, these navigators, and therefore it didn't lead to an increase in available organs. So it's interesting to think that it seems not the opt-out system that leads to an increase therefore, it seems that the communicators and these bedside navigators lead to the actual increase in organs. So in return, coming back to our question at the outset, will an opt-out system lead to more available organs, if it purely depends on these communicators, then why can you not have these communicators in an opt-in system? Like at the bedside. And I'm wondering what you think about that?
LF: That, I, you're probably right about that, and that that's the most critical element in securing an increased supply of transplantable organs. There are some other options though, and since we're talking about other countries in the world I did want to mention Israel did one thing that I thought was kind of interesting, and I'd actually be inclined to endorse it, I don't know if you would endorse it. But what Israel decided to say was that if you wanted to be considered for an organ transplant, should that need arise at some future point in your life—ten years from now, twenty years from now, thirty years from now—then, it had to be the case that you agreed ahead of time that you would also be willing to be an organ donor. Otherwise, and the whole idea is, you know, this is what reciprocity is all about. This is what fair treatment. If I expect you to donate the organs of your loved one to save my life, then I ought to be willing to either make my own organs available for donation or to agree to donate the organs of a loved one for the same purpose. And so that seems like something that is morally reasonable. The result was, and this was very widely publicized, and of course Israel is a small country, but within ten weeks they had increased by seven or eightfold, the number of individuals who signed up be organ donors. So that seemed like a very effective way, and again that's respectful of autonomy, it's, and it seems like it's also it's more just, more fair than the alternative. Though I realize there would be a kind of awkwardness associated with someone actually having a need for an organ transplant and checking to find that they had never agreed to be an organ donor. And having in effect to say to them, well we're just going to let you die then. Now it doesn't actually work that way in Israel, but the way it actually works is that if two people are equally available to be an organ recipient, and one of them in the past has agreed to be an organ donor, they would get priority over an individual who had not agreed in the past to be an organ donor.
ME: And in a way, when you're alluding to that, I'm thinking about the example that I read a couple, may a year ago or two years ago, about, here in the U.S., a grandfather signing up to give an organ because his grandson needed a kidney in the future. So, there are variations of those systems available. And I'm, I probably should have looked it up, but, so there are systems of paired and chain donation available in the U.S. I believe that the system is somewhat problematic because some individuals for their religious or cultural beliefs cannot sign up, right, to be an organ donor. Does this exclude this from receiving an organ donor. And then, in the paired and the chain donation, it always depends on your social connectedness, right? And so it would exclude a hermit that doesn't have any relatives to sign up for, right. And so I think both these systems, you know, suppose some homogeneity of individuals, some reciprocity that basically on which the organ systems, you know, shouldn't fully rely. So I'm not sure that these system are, are as unproblematic as you say, because they make certain moral presumptions, and they make certain personal assumptions on your personal things. But then-- okay, you want to say something.
LF: Okay, so maybe what we have to say is that, we can't hope for something like perfect justice or perfect respect for autonomy. We have to settle for non-ideal justice or imperfect justice, and, um, a bit of a compromise with respect to personal autonomy and so on. But that's the price we may have to pay in order to secure an increase in the number of organs that are available for transplant purposes in order to save the lives of individuals that in fact are salvageable.
ME: Let me, let me put you a little bit more on the spot here, Len. So if we're talking about, you know, we want to achieve a system that generates more organs and a system that is based on somewhat of an autonomy, so how, what do you think about the sales of organs then?
LF: Oh, well actually I would be opposed to the sale of organs. I'd be opposed primarily for moral reasons. The individuals who would be motivated to sell a kidney or to sell a portion of their liver and to risk the surgery, the morbidity, and risk the mortality associated with that are individuals who would be relatively poor, less well-off, and so they'd be vulnerable to exploitation. In general, it shouldn't be the case that those who are financially well-off would be able in effect to buy an organ to gain additional life, when it would be the case that an individual who is less financially well-off who had an equal medical need would not have the ability to obtain an organ in that way. Would have to rely upon some less reliable system.
ME: So I think that, I hope you don't mind me challenging you here, that that presumes a certain system of, an unregulated sale of organs. While, for example, in Iran, I alluded to that, there is a regulated system of organ sales. So, you know what you're gonna get, you know, for example, $3000 for an organ, and it's actually the government who sells, who can then redistribute them. The organ is just, you know, you just pay $3000, basically anyone can purchase it because it doesn't, it's not that $10,000 will offer you a better kidney than a $3000 one.
LF: Would there be some individuals who could not afford the $3000?
LF: I mean given, I assume if you're using a number there relative to the standard to living in Iran, would be equivalent to $30,000 or something in the United States. Or maybe that's too high.
ME: Yeah, you're catching me in something that I'm not even fully aware of. I don't know what the regulated market means. And if in Iran, for example, individuals have for healthcare insurance, for example. Because, I mean, we, I named the money $3000 for a kidney, but basically here in the system, probably a kidney costs $3000, right. If you look at the value of it. But it's just being taken care of by insurance. So it's paid for by insurance. Imagine that in Iran the people have healthcare insurance that can pay $3000, you know. If it just about the availability of organs, yeah, if people are willing to give up this organ, for example, in restitution for some financial compensation, you now, I don't know if there is, if it's very different. If we're basing our argument around autonomy.
LF: You know, who are the people who are willing to give up an organ for any kind of financial compensation? I wouldn't. In part because I'm very securely in the middle-class and so I would not want to have to take on the medical risk associated with surgery like that for purposes of making a few dollars that wouldn't mean that much to me. It would be different if it was somebody that I cared a lot about, and who was desperate and for whom I could provide that organ. Then I'd be willing to take the risk, but not for money. I just...
ME: Right. And as we're talking I realize we're actually confusing multiple systems. So an opt-out and an opt-in system refers to, you know, when we're talking about that, refers to deceased donation. While we are talking about living kidney donation, right.
ME: And who is willing to give that up. So in a system of, you know, an opt-out system, or even in an opt-in system, I would not give up my organs while being alive. So, I think it's necessary to distinguish that. So the argument about, you know, who would sell their organs, and, maybe I'm poor, but I can gain money, right? You know, why should I not be allowed to get some extra money from this extra kidney that I don't need. Right? Which is the idea of, you know, privileged people say that I'm being exploited when I'm selling my kidney, well I just want to give some money, right? I just want to get some money, why should I not be allowed to sell my body. Right? So, um, so that's an argument against, you know, or to counter your concern about who would give up their organs, it's just the people who are vulnerable. Maybe, but then, why not, if I have a spare one, right. But I think maybe we should go back to the system after, you know, after death, and, you know, what happens there? And if, if that's, you know, vulnerable to exploitation, etc. Yeah.
LF: That would probably be less vulnerable to exploitation, and a number of policy makers in the United States have suggested that state governments or the federal government could provide tax incentives of one kind or another to encourage donation. And, uh, and this is donating the organs of somebody who is, who has already been declared dead. And so there is, the issue of exploitation then seems to go away. I probably would have less in the way of objection to that sort of system. We could ask other questions about whether that's a good use of resources and so on. One of the problems that, we can't really go into any detail on this, but the basic issue is if we were to get in the United States, say, 8,000 more organs in a year, would we have then saved all the lives that needed to be saved? And the short answer is no. Because we right now control access to the list of individuals who are put, who are available or who are in need of having a major organ transplantation. If we were more liberal in allowing individuals to access that list, then the need would obviously increase. And so the actual need for hearts, and livers, and so on is many, many times greater than the simple loss of those 8,000 lives that I mentioned at the beginning of this discussion.
ME: Um, I don't know how to wrap it up, Len. It sounds like there is many argument that we could use, you know, to support an opt-out system. And also to use against an opt-out system and for an opt-in system. And these arguments, you know, range from have we tried everything, what are good-- what are some other means to increase the available organ. And does it mean that, a presumption that your organs are, you know, should automatically go to other people in case they haven't opted out. Is that really, should that be the presumption. Which is something that I struggle with. To really maybe wrap it up is one last thing that I want to say. Um, our organ donation debate is surrounded by language, even, you know, referencing donation, etc. It's a very fluffy wonderful language. And I, I do think that we are in some way persuaded by the language of gift and the language of donation. And the language of wonderfulness. And to me, that is somewhat interesting. Um, when I'm reading again the parliamentary history up to the change in legislation in the Netherlands, it is all about donation. And when I studied a little bit cross-culturally, you see that the language of donation and gift is very much tied to some Christian Western values. And, for example, some other cultures and religions you don't speak of organ donation, you speak of organ harvesting. And these are very harsh terms that we don't like to embrace. And, yeah, I'm just thinking that we haven't really explored all the arguments around, or all the arguments and the language around organ donation yet. I think it's a fascinating discussion that we can continue to have.
LF: And it's a discussion that needs to occur in the, with the public. And it's both a moral and public policy discussion. And with that, thank you Marleen for your contributions today.
ME: Thank you Len.
LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu, and follow us on Twitter @MSUbioethics. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel.