Thursday, September 7, 2006
Session 3: The Ethics of Organ Allocation
Discussion of Staff Working Paper by Dan Davis, Ph.D.
CHAIRMAN PELLEGRINO: Thank you very much for returning so promptly.
We will turn to the procedure we were using this morning of a paper having been prepared by the staff summarizing our positions, that is to say where we are chronologically rather than position. And the topic for this afternoon is the ethics of organ allocation and again, prepared by a member of the staff and the discussion will be open on this particular paper by Professor Alfonso Gómez-Lobo.
DR. GÓMEZ-LOBO:The excellent staff working paper provides a clear and well-organized information on the current system of organ allocation and the legal and ethical framework within which it functions.
The paper also describes the main ethical controversies surrounding the allocation policies and ends with a chapter on suggestions for inquiry and discussion on the part of the Council, so it gives us a task so to speak.
The backdrop against which the issues of organ allocation arise, of course, is scarcity. Demand outstrips supply. In the face of this fact, the U.S. has developed a legal system to assign available organs to the patients needing them. As the helpful appendix to the paper shows, the system is quite complex because it must take into account multiple variables. Allocations vary by organ, urgency, waiting time, blood type, compatibility factors, age and geography.
The expectation, however, is that the system will satisfy moral principles of utility and equity. The former entails that waste be avoided and benefits be maximized. Equity requires that the location be fair and just.
The working paper indicates, the demands of autonomy are all expected to be satisfied, that is, that the autonomous choices of donors be respected. The chief controversies arise in the interpretation and application of the principles, especially when conflicts seem inevitable, for example, when a fair distribution appears to be inefficient or when maximization of benefits could be obtained by restricting autonomy.
Now what should the Council do? What would be the task for us? As I indicated, the paper makes some suggestions, namely in three areas where the Council from a national or federal perspective, so to speak, ranging above the states, could make significant contributions.
One would be the ethics of allocation by geographic proximity; the second one the ethics of directed donation and preferred status; and, third, the ethics of discretion exercised by physicians to promote the good of their individual patients.
However, discussing these three areas of concern makes sense, it seems to me, only if the broader context remains stable. If the donor rule is upheld while the neurological criteria to determine that are abandoned, the problems of allocation may change substantially if they're abandoned at all.
The same is true, I believe, if a market system, even a limited one becomes socially and legally acceptable.
In my view, the weight of geography and allocation calls most obviously for a critical examination of this, the review. The wide disparities in waiting time in different jurisdictions for patients in a similar state of need seem to be unfair and hard to justify.
But in order to seriously consider the moral arguments on both sides of the issue, two points should be clarified ahead of time in my view. One is the extent to which geographical proximity was chosen because of viability of the organs, whether they really hold long distance transportation. In other words, one has to raise the question as transportation of harvested organs become efficient enough for it to be irrelevant whether a liver reaches New York City from New Jersey or from San Francisco.
A second point that should be examined in my opinion is whether the appeal to regional community in contrast with a tightly knit familial community is an idealization of virtually nonexistent relationships or is strong enough to carry moral weight of the debate. Preferred status raises, in turn, moral issues that directed donation, for instance, within the family does not and surely deserves to be examined.
Finally, clinician discretion, trying to improve the chances for transplantation of his or her personal patient is a matter of concern that calls for further refinement of objective criteria to guarantee equity, but I personally thought that the broad guidelines need to be changed or that there's a major ethical problem.
Finally, my own inclination would be for the Council to take, as we have been doing, a broad view of transplantation as such, but of transplantation in an aging society and within that context I would suggest that we take a special view of the weight of age in organ allocation.
CHAIRMAN PELLEGRINO: Thank you very much, Dr. Gómez-Lobo.
Any questions? There must be some question about the paper. Content.
Gil, you look like you're moving toward the microphone? Thank you.
PROF. MEILAENDER: I think it caught us all by surprise because I was psychologically prepared for a second commentator before I had to, as it were—
CHAIRMAN PELLEGRINO: You had a footnote, right?
PROF. MEILAENDER: — think. Yes. I would just say two things. First, just to say I sort of stand in awe, Dan, of your ability to clarify the procedure here. What I don't know is how the people who actually do it stay clear on what they're doing, but that was very nicely done. Obviously, having gotten that, the crucial questions for us in some ways come later. And I was just wondering, I don't know if we have a clear sense of the relative importance of these several questions, but the geography one which may be most people don't — the geography sort of appeals to me in a way, although I was going to say most people don't think it's the most important of them, and for a reason that relates to some of the things, relates in a way to some of the things we talked about this morning.
If the issues are only the ones Alfonso focused on, just how efficiently can you transplant an organ, or transport an organ for a transplant from one location to another, that's one thing. But if the issues are is it — does it have to do with is it fair that those who live in one place should have a better chance than those who live in another to get an organ, then we're back to questions about whether we have sort of greater responsibilities to certain people, saying now those who live in proximity.
I like the Walzer stuff that you drew on. Or whether our responsibilities are just sort of universally distributed. And if universally distributed and if we for a moment just bracket the transport problems, if universally distributed, then it's not quite even clear why national boundaries are supposed to make so much difference in this kind of case. So that whether others think it's the most important question or not, I think it actually raises some very fundamental questions about the nature of moral obligation here, whether one has greater obligations to certain people or not.
And I have to say that in a case like this they're quite puzzling questions actually.
CHAIRMAN PELLEGRINO: Alfonso?
DR. GÓMEZ-LOBO:Well, indeed, I saw that as a very serious problem, but let me be very candid about how I see it. I said there that I distinguish between the regional community and the tightly-knit familial community. To me, it seems that, of course, the obligation towards the family, the immediacy in that sense is out of the question. Of course, that's there.
What I have serious doubts about is what I would call the idealization of community in 21st century America, because how would I put it? I just don't see it. The fact that someone from New Jersey, from northern New Jersey would get a kidney from someone in southern New Jersey, I mean what community is there and why couldn't someone in Oklahoma receive it? They don't know each other. There isn't much of a community anyhow, so either I have a total misperception of life in America today or I don't quite get it.
Let me tell you, Gil, what my backdrop for this is. For instance, if someone said in Greece in the '50s, look people in this town should get preference, that makes total sense because people in rural towns in Greece did know each other. They went to school together. They did all of these things. So there, there is a real sense of community. In a country where or in regions where there's a high turnover every year, let's say because of labor opportunities, etcetera, it just doesn't seem to me that the argument is as strong as it would be if you had these smaller communities where people do know each other.
CHAIRMAN PELLEGRINO: Peter.
PROF. LAWLER: I am perplexed by all of this, including those reasons, but in general, it's hard to know what equity — I don't think there's any uncontroversial way of looking at this in terms of who is the most worthy and what's the most equitable. For example, with respect to kidneys, you're put on a waiting list and that seems fair, wait your turn. But it seems very unfair because the longer you wait, the more your health is debilitated and the less likely you are to actually benefit from the kidney.
So if we were all about prolonging lives and improving health, we would give a kidney as it becomes available to the first person, the most recent person to hit the list who's probably the most healthy, the person who has not been debilitated by dialysis and so forth. Yet, that would be monstrously unfair to the good American from this or that community who has been waiting for years to get one.
I don't know of any objective way to reconcile this. If your goal is to use public resources, if that's what kidneys are, to maximize the health of the population, then, in fact, you should give them to the most healthy people who need them. On the other hand, you want to be equitable to all Americans, you should give it to the person who has waited the longest, who is probably pretty darn sick and may not benefit all that much. So how, in fact, do you resolve this?
CHAIRMAN PELLEGRINO: Dr. Eberstadt?
DR. EBERSTADT: To follow up on Peter's comment, I was not sure whether my comments would be more appropriate for this session or the next one, but we've gotten into this part, why not here?
If you were to consult with literature described as health planning or with certain parts of the health economics literature, the criterion which might be suggested there would be some sort of measure of lives saved or health maximized. And there are different sorts of particulars that aren't identical that could be offered there as utilitarian, actuarial sorts of criteria. And one would be actual episodes of death averted or what we call life saved. It's really life continued or death postponed.
Another would be years of potential life maximized. There's a rather highfallutin concept in health economics called DALY, Disability Adjusted Life Years, which is more obvious in theory than in practice, but it might also suggest as a sort of — a health planner might suggest a desideratum DALYs maximized in this sort of circumstance.
Is this sort of life expectancy or health expectancy maximization desideratum criterion which we should apply to these decisions or if it is not the sort of criterion we should apply why shouldn't we? I can see some arguments against it as well as for it, but if we're going to make the arguments against it, I think we have to be pretty explicit because there's an increasing presumption, at least in the economic side of literature, that this is the way we should focus on our observations.
CHAIRMAN PELLEGRINO: Alfonso?
DR. GÓMEZ-LOBO:Let me react very briefly. I think that from reading Dan Davis' paper which taught me a lot, the reality is that people who have sat down to think about these things have taken all of that into account. In other words, the result is a very, very complex algorithm. It's a system of points where different things are taken into account. And reading everything in good faith as I think I should, there is a genuine effort to meet demands of utility and to meet demands of equity.
And I personally could not improve of the system as it exists, nor I'm sure we could as a Council because I think a lot of experience and years of looking at statistics and availability of organs and times the graft survives, etcetera, have been taking a look at. It did seem to me, and there was a public debate on that which I became aware of through that, that geography was one of the last outstanding points where there was a genuine conflict.
In other words, once everything else is taken into account, you know need, prospects of years of survival, age, and all that, there still seems to be this great disparity between living here and living 30 miles north of here. The waiting times are just, you know, completely different. So that is the only point where at least I saw a moral question. I mean, is that acceptable or should efforts be made to factor this into the whole equation in such a way that the allocations become more equitable?
CHAIRMAN PELLEGRINO: Peter and Gil. Yes, I said Gil first.
PROF. MEILAENDER: I will come back, I want to come back to the utility/equity question that Peter raised. Although I'm still, I seem more sympathetic to the geographical difference, Alfonso. But I mean obviously it would be hard to argue either that one should only pay attention to the considerations of utility or that one should only pay attention to considerations of equity here. Although trying to do both does give us this very complex system that Dan sorted out.
But I don't know, I think I would want to argue that in some way of what exactly this would mean for policy. I don't know, we would have to think it through, but that in some way or another equity has priority over utility. If utility has priority, then we're back to thinking our fundamental thought is here are these kidneys a public resource? And I think I just wish to resist that way of thinking about as the bottom line way of thinking about what is happening.
I wouldn't deny that you cannot afford to pay no attention to considerations of utility. You can't do things that just seem foolish finally and don't seem to accomplish much of anything. But if one of these has a kind of prior claim on us, I think it's equity and I think it's got to do with the fact that there's some reasons not to think about bodily organs just as a resource whose efficiency should be maximized.
CHAIRMAN PELLEGRINO: Peter?
PROF. LAWLER: I'm just going to agree with the last two comments. Number one, the system is hopelessly complex. I'm not sure I fully understand all these point things. This obviously evolved through experience taking equity and utility and geography into account. It's unreasonable to expect perfect justice from it because you really do have competing claims for justice.
And insofar as you have to choose, you choose equity over utility because people have to trust this theory is fair. And if you want to cause people to think something is unfair, turn it over to economists who will think too abstractly about the resources or not enough about their particular people.
So I'm bothered by the geography thing. I'm not sure I understand fully why the disparity exists. It would be my own opinion that this is something our Council cannot address very effectively finally partly because the system ain't that broke and partly because the whole thing is too complex, and not morally questionable but morally ambiguous or something for us to really be able to find out how to fix it, if it needs fixing which it doesn't that much.
CHAIRMAN PELLEGRINO: Anyone else on this point?
PROF. GEORGE: This is going to be a blunt assertion. What if there were a national wait list for organs? Because right now the people are waiting, according to their regions, and according to their need if an organ shows up in a certain region, the most needed person in that region gets a first shot at it. If the surgeon rejects it, then it goes to the broader region and then even broader. But what some people argue is if you have a uniform list, assuming that transportation problems aren't there, then with a complex system of planes, you could possibly achieve more equity than the present system.
CHAIRMAN PELLEGRINO: Gil.
PROF. MEILAENDER: Just a quick question. Just as a purely theoretical matter, for a moment, granting that there might be all sorts of practical arguments involved, what would be your objection to an international system?
DR. GÓMEZ-LOBO:You know that I am very favorable to something like that. But, of course, we are here trying to deliberate about this polity and I would not like to overstep the boundaries of that polity.
CHAIRMAN PELLEGRINO: Peter?
PROF. LAWLER: But then you also say the regions aren't real, in a certain way. America is not a country divided into regions. But the country is real and in some deep, metaphysical way it's an arbitrary distinction. But wouldn't a global market just be unmanageable finally?
DR. GÓMEZ-LOBO:That is why it's Gilbert's fault to go into the global market. I don't want to go there. No, but within the U.S. it does not seem to me either impossible nor unreasonable to go for a national wait list. Now again, I'm going to speak from my experience. I've lived in four different states in the U.S., and I've never lived in Indiana and I think I have a much closer relationship with someone from Indiana than I have with many people who live, you know, forty yards from me.
CHAIRMAN PELLEGRINO: Bill Hurlbut and then Dr. Carson.
DR. CARSON: I think it is probably important to go back and look at some of the economics involved here because you know when an organ becomes available and it is distributed on the basis of first come first serve, regardless of the region, it requires a transport team for that organ, which can be quite an extensive organization. From getting that organ into the proper solutions and into a cooler, transport team. And I've seen these transport teams. They go through the airport in a limousine. I don't know why they need a limousine, but they do.
Then a private jet. This stuff costs money. It costs all of us money. When someone in the same town who also needs an organ, but is lower on the list, you know, it's those kinds of policies that I think are driving us into the ground economically, and you know at some point there needs to be some logic injected into the whole argument.
CHAIRMAN PELLEGRINO: Dr. Schneider?
PROF. SCHNEIDER: This helps convince me that Peter is right, that for us to try to imagine what a sensible system was, even trying to fix the regional problem you can't do it without factoring into account all of the other issues. And even if we got it exactly right, the chances that the world would change enough to require a change in the system, reasonably soon afterwards, strike me as being pretty good. So I think Peter has spoken with the voice of wisdom.
CHAIRMAN PELLEGRINO: Anyone?
PROF. MEILAENDER: Well, then what would Council members — let me start that over. Assuming that we're hoping to produce some kind of a report on this general matter that we're working on. What would Council members see us doing with the material gathered in this paper?
I thought it was very good in many ways, both just in terms of clarifying with respect to what we're doing and with respect to clarifying certain kinds of deep tensions built into what we're doing, not necessarily that we can overcome them, but that they're just there in a way. That all seemed to me to be useful. How would you use it? How would you use this material in some product that we produced?
CHAIRMAN PELLEGRINO: Dr. Schneider?
PROF. SCHNEIDER: Do we need to? I take it this is anticipating a little bit our discussion of tomorrow, but we have very limited resources and there are a lot of places where we could put those resources that I think might result in a genuine change in the way that the world works and an important change in the way the world works.
I agree that it's a valuable thing even just to clarify, but it's not at all clear to me that that's the best use of limited resources.
CHAIRMAN PELLEGRINO: Peter.
PROF. LAWLER: As a wise person, let me disagree just a little and say that maybe Gil is right. It's a wonderful right presenting a lot of useful information that on balance would cause you to trust the system we have more, precisely because as Alfonso says, there's a genuine effort to try to balance the conflicting claims to justice.
The system is imperfect. What system isn't? And I was against making any specific recommendations to improve it, but there's a lot to be said in making the nation aware of what we have now and why it is the system is the way it is now. And it's not horribly corrupt or unfair. It just embodies attentions that would have to be embodied between utility and equity and between efficiency and equity too. There is an argument for giving a kidney to the guy down the street because it's much cheaper and perhaps he would be more likely to benefit from it actually. And these problems don't go away. There's not some kind of theory of justice that would resolve all of these tensions.
So this part of the report, in my opinion, would be largely descriptive. This is what we have.
CHAIRMAN PELLEGRINO: Thank you. Alfonso?
DR. GÓMEZ-LOBO:Not to over elaborate, but there seem to be problems of inequity which perhaps could be solved taking into account the transportation issue in terms of preservation of the organ and cost. I'm certainly partial to taking a very close look at that. But I'm looking at the figures provided, for instance, one recent report found that the median waiting times for livers at one of the centers, we're talking about the State of Kentucky, was 38 days while there was 226 days at another. Or in the New York City metropolitan area, the median wait for liver transplant for patients with blood type O was 511 days in New York City versus 56 days in adjacent cities in New Jersey. So we're not talking about big distances, etcetera. But it seems to me, at least on the face of it that there seems to be a problem there and that there have been calls to face the problem in the past.
Dan knows more about this. So while — of course, the report is wonderful and presents a wonderful description of it. There may be some normative questions that it makes sense to address.
CHAIRMAN PELLEGRINO: Dan, do you want to make a point of clarification here?
DR. DAVIS: That's the reason I included this because the question about geography is unresolved. The final rule still stands. UNOS does have subcommittees for each type of organ that work on a continuous basis revising the allocation algorithm, just as you noted on the basis of outcomes data, etcetera. I know, for instance, that there is a proposal that's now on the table for revising the kidney allocation to include points for QALYs, Quality Adjusted Life Years. Now whether that goes forward, I don't know, but evidently that proposal will go to the Board of Directors.
What continues to be resisted is the mandate in the final rule which is not to produce a national list, but to reduce geographic inequity. And when you probe people as to why is that the case, usually what you learn is it's because of the political power of the transplant surgeons and certain OPOs. If we move toward that sort of system, the smaller OPOs will be disadvantaged and that collectively they have quite a bit of political power and they exert it.
And the argument that's usually made in favor of the current system that by allocating organs within particular localities, you give an inducement to donation, there's no empirical data whatsoever to back that up.
CHAIRMAN PELLEGRINO: Dr. Carson?
DR. CARSON: I actually have a question for you, Dan. Because I don't know if this is true or not. I saw it on a morning news show, so you know —
DR. CARSON: But they were saying that for organs, people on organ waiting lists that people in the state penitentiary were at the top of the list. They got priority. Is that true and if so, why?
DR. DAVIS: I don't know if that's exactly true. I do know that UNOS has a policy of nondiscrimination against prisoners, so that would suggest that they could indeed make their way on to the list and if they're on the list, then they are going to be prioritized by the other criteria.
There have also been proposals that that not be the case, that if you were a prisoner, if you have been convicted of some felony, that you should not have access to transplantation.
DR. FOSTER:Just a local statement about this inequality, the difference between getting a kidney in Terrant County in Fort Worth and Dallas is pretty enormous, so the biggest private hospital in Dallas, the mother hospital, the Baylor Hospital system opens a transplant service in the small town over the border of Terrant for economic reasons because in most hospitals transplantation is the most profitable thing that is done.
I mean anywhere you go, Baylor Hospital I was talking about; Barnes Hospital, so this is an enormously profitable thing for a hospital to do. So they move a whole hospital program into Grapevine, Texas so that they can get kidneys five times faster or whatever it is now, than they can do 15 miles away in Dallas.
These things are very real. I don't know what you can do about it, but they certainly, the reason that you just said, there are political reasons why these things exist. They're not rational reasons why they exist.
CHAIRMAN PELLEGRINO: Dr. Schneider?
PROF. SCHNEIDER: Could I just ask then how feasible a national system would be, not just economically, but also medically? Because any system that's less than a national system I would suppose would encounter some very difficult line-drawing problems and you're always going to produce some inequities because whatever line you draw is going to produce some arbitrary results. So is this remotely a possibility of a national system?
DR. DAVIS: I don't know. We are going to be meeting with the Division of Transplantation for Health Resources and Services Administration and Jim Burdick, who is the director of that division has been very much involved, of course, in this particular fight. He was the president of UNOS at one time and now is with the Federal Government. And that's one of the questions we want to ask them is where does this debate, as far as you're concerned now stand, and what is the viability — again not necessarily of moving toward a national system, I think we have to be careful there —but of reducing the geographic inequities that continue.
So I do think it's important to make that sort of distinction and we'll try to get some sort of answer to you. I'm not sure that the data exist to make that judgment, but we'll certainly find out.
CHAIRMAN PELLEGRINO: Gil?
PROF. MEILAENDER: Just to keep pressing the question a little bit, why would if not removing at least decreasing the geographic inequities in this instance be an important thing to do, a more important thing to do than reducing the inequities in funding of public school systems in states, for instance.
In other words, what makes this the kind of issue that should be treated more universally, more at a national or a federal level as opposed to a state level? Is there something that distinguishes it from say public funding for education, which is remarkably different from one state to the next?
CHAIRMAN PELLEGRINO: Alfonso.
DR. GÓMEZ-LOBO:I really don't know how to answer that. It seems to me, well, if there are inequities in other areas of public life, that does not make inequities in the next area justifiable.
CHAIRMAN PELLEGRINO: Dr. Schneider.
PROF. SCHNEIDER: If I understand the question, I think one part of the answer is if we're distinguishing between policies that are produced by state governments and the inequities that those produce, then we may be responding to the federalism problems that we talked a little bit about last time. Here, I take it is not a question of the authority of states to regulate their own populations, but a question of sub- and supra-state equity.
CHAIRMAN PELLEGRINO: Bill, Dr. Hurlbut.
DR. HURLBUT: Well, just an obvious comment, some practical issues like the size of the pool versus the probability of an immune compatible match. Also, the time of transport is relevant. Maybe Ben can clue us in a little better on some of the time issues involved in that, but they are certainly relevant, aren't they? Which by the way would probably make an international pool impractical.
DR. CARSON: I can just tell you, it's a multi, multi-hour process. Frequently, I've seen organs, for instance, go from Baltimore to Minnesota. It's a lot faster than, you know, the normal transportation system. There's no question about that.
You know, you don't have to get screened and stuff like that, because everything is done privately. So if it wasn't so much of a time factor that I was bringing up as it was the expense factor, which is you know beyond the pale.
CHAIRMAN PELLEGRINO: Other comments? Other issues besides the geography issue which has occupied a significant bit?
And I guess Gil's question of the allocation between transportation, let's say, education, other social needs, and transplant?
PROF. MEILAENDER: I will just do one more. I don't wish to press it, if I'm the only person that seems to feel the real tug of the limiting factors here. But take the physician digression issue, which we haven't said much about at all. If I needed a kidney and were willing to take a transplant, the question is to be decided there yet, but if I did, I'd really like my physician to, as it were, be strong and personal an advocate as possible for me.
That would seem to me to be part of what I wanted from that physician as physician. I have no objection to, you know, all of us as citizens or what else constructing a system that may constrain the physician in certain ways because we think that fairness requires it. But not only does physician digression seem to me to be a hard thing to really remove, I don't think it would be desirable to remove it either. So it's just another sort of particular factor, that I would at least want to see a certain virtue, and I think that's what when one of my kidneys is failing, that's what I'm looking for from the doctor.
CHAIRMAN PELLEGRINO: Thank you. Yes, Dr. Eberstadt.
DR. EBERSTADT: There is a great big elephant sitting over in that corner of the room. And that elephant's name is economic reasoning and market forces. Because like it or not, everything that we're talking about is conditioned by these two parts of our environment that are all around us like ether.
From an economic standpoint, as Alfonso mentioned at the very beginning of his eloquent remarks of the organ donation transplantation dilemma is described in economics as an economics of rationing situation.
In very first introductory lectures in economics, one is treated to the problems and inequities that rationing circumstances make for those who live in societies where rationing is imposed. Again, the introductory remedies that are offered are an increased introduction of market forces, market competition, and all of those other things which you know and appreciate.
In a small and immediate sense, one might expect more market forces or more market competition to reduce some of the geographic disparities that Peter was talking about. But that's not the greater game. That's possibly a play. That's not the elephant that's off in the corner of the room. The elephant in the corner of the room is the idea of a marketization or a commoditization of the prospect of an organ market in the United States or even as Richard Epstein was suggesting two sessions ago, a global market of the sort.
Now from a — again, from the desiderata or criteria of years of potential life lost or qualities or DALYs, one can imagine how that sort of a market in theory might reduce deaths or maximize life expectancy. But there are an awful lot of other things that would also come along with that sort of a market in theory.
And if I am correct that the forces of marketization in the world in which we live are pretty relentless at this point, that's part of the discussion which I think our Council could be very profitably applied to thinking about how this currently affects us, how this may affect us in the future, and of what the pros and cons there are.
CHAIRMAN PELLEGRINO: Thank you. Peter?
PROF. LAWLER: Well, I don't agree that the market is a solution to this problem, but this problem is a problem because of the lack of a market requires us in a very un-American way to think about justice when we usually just leave these things to the market.
Right, so no doubt if there were a market in kidneys, I guess, these geographical disparities would take care of themselves in some way. But we can't turn to that. So in a certain way, it's remarkable how good the system is we have given the fact that we can't rely on market forces to have these things kind of resolve themselves in some cases.
That leads to the other question that perhaps that we should leave to the next session, except it comes up at the very end of Dan's paper. And that is to what extent here do we have a crisis? And then gives us a lesson, the meaning of the word, crisis and compares this crisis to — this alleged crisis to other crises like the Cuban Missile Crisis and hurricanes and such.
It's really, I think, worth talking about. To what extent is this a crisis, right? Because in the absence of the technology, people would just die of kidney failure. And part of the crisis is the crisis of dialysis. You know, in a certain way I'm not endorsing it. But dying of kidney failure in a certain way is not as bad as deaths go. You MDs talk about that.
But, in fact, the crisis here is a crisis with expected kidneys engendered by huge numbers of people on dialysis waiting and hoping that they would be removed from dialysis. So the crisis is caused by, and again I am very sympathetic to those who don't think this is a crisis like the Cuban Missile Crisis is a crisis, or even the crisis in health care is a crisis in general. But except to say that the perception of the crisis depends upon the things Dan talks about here in the end that we have this wonderful and very profitable technology, transplantation technology, that depends upon — and again, I don't want to use the phrase natural resource. But it depends on natural materials.
There is a scarcity of natural materials and our perception of the crisis is the scarcity of the natural materials and a professor of economics most naturally would say well, one way to overcome these problems of scarcity is to introduce market forces.
And I'm not endorsing introducing market forces, but you could see how someone would say that. Once you buy the crisis thing, then the most obvious resolution is the introduction of the market forces to overcome the scarcity in the natural resource.
CHAIRMAN PELLEGRINO: Thank you, Peter. Dr. Eberstadt?
DR. EBERSTADT: Peter, I would say that the market forces are there like them or not. It's just how they affect things.
PROF. LAWLER: In general, I like market forces. Not for everything.
DR. GÓMEZ-LOBO:One afterthought with regard to what Gil was suggesting a little bit earlier, the question of physician discretion. It seems to me, surely one would like one's physician to do the best for oneself. But what we're talking about here is actually the possibility of cheating. That is of putting people ahead on the list by claiming say a condition in the patient that the patient doesn't have. So from the point of view of ethical thinking, I don't think there's a big problem here.
The main question here is that the system have clear guidelines that can be say more or less objectively checked so that that doesn't happen. It seems to me that you know it's a system that's perfectible, but apparently already has good instances of control.
CHAIRMAN PELLEGRINO: Gil?
PROF. MEILAENDER: This is really more a question than specific-wise, because it has been a few days since I have read this. I didn't think the issue turned simply on the questions of physicians cheating, did it? You set it up as distributive versus commutative justice, and no form of justice would involve cheating finally.
Now insofar as they were cheating, then it would beyond the pale. But no doubt there are lots of cases, I don't know, there certainly are in other realms of life and there must be here when exactly one shades the interpretation of a patient's condition cannot be said to be lying or cheating, but there are different ways of shading it that might make it seem more or less worse and make the person more or less eligible.
I was not endorsing, did not think I was endorsing cheating in wanting to take seriously the kind of physician discretion. But I think that once again that's part of the doctor-patient relation, that the doctor is in some ways an advocate, just as I would like my doctor to get a hospital bed for me if I need it, without denying that as citizens we have to make decisions about how many hospital beds we're going to have and maybe I'm not fortunate to get one, but I sure would like the doctor to try to get one.
Same thing here. That's all I was drawing out of this.
DR. GÓMEZ-LOBO:I had no doubt that that's what you meant.
DR. FOSTER:Well, I think in regard to your question, for example, you can only move up on a heart transplant list if you're in an intensive care unit. So one way, you know, if you've got really bad heart failure you're going to do better in an intensive care unit than you will be at home, no matter, instead of bouncing back and forth to the hospital, you'll do better.
So it's fairly common to see physicians do what may be arguably the best thing for their patient with end-stage fatal heart disease to put them in the ICU, but hiding in the background is also the knowledge that the only way that you can move up to get a heart is to be in the intensive care unit. And I don't think you'd want to call that cheating, but not everybody is — if you're in a smaller town, there may not be an intensive care unit you could go into if you're in a 60-bed hospital or something.
The larger question here, I think that Peter oftentimes says these very wise things, I mean compared to the way the world is, this is not a crisis, okay. We've got 90,000 people and a significant number of them are alive on dialysis. They're not in immediate, they're not happy, I agree with that. They're not in the immediate form of death. What we're — I mean, what we have to say is and I think this is what Nick was saying here is that if you really want to increase the number of kidneys which is what we're really addressing here, because that's the bulk of people which are there, you're going to have to use a different system than what we have.
There's no way — I mean we already heard this at the last meeting or the time before that some hospitals, 70 percent of the brain dead donors give. Other places it's 50 percent, but at the most you're only going to double what you have from that.
So if you really want to do something about this from a medical standpoint for these people to have a better quality of life or to live longer and so forth, then as with any scarcity phenomenon you have to pay for it. I mean if people are worried about oil, they pay $3 for gas or it goes from 10 cents to whatever it is in Iraq right now. You've got scarcity to do that. And if you pay enough, you can get the organs, you know. I mean you can do that. I think Alfonso is not sure that even if we had a market system that you would do it, but it would drive up — there are people who are willing to pay huge amounts of money for certain things to happen.
So the only solution to the problem would be to as Mr. Epstein said to us is that you're going to have to pay for this. Now the consequences of that are multiple. If it moves to a really high level to get kidneys fast, then the rich will get them and the poor won't already. You can usually get a kidney for poor people, but you can't get a liver for poor people because it costs too much to do.
So that puts a problem into it as well. I mean totally apart from the fact that if you had a market system and you were able to pay for it for the poor, that that might, in fact, help the poor because that might be the only chance that they would get a kidney.
I think the question really is, and we're just diddling around geographic things and all that. That's not going to have anything to do with this organ thing. The issue is you're either going to come for saying we're going to modify it, if you want to use that term, we're going to buy things and if it's not, the problem is not going to be solved. You'll just have to say we're going to live with this the way we do it and it's not so bad.
So in one fundamental sense, the Council has to decide whether they think this is an important enough issue to take a radical step, that is to say, as some people in the nephrology community do, we ought to do like we solve most other problems of scarcity, that we ought to go ahead and make it possible to make this available.
I'm not sure where I stand on this at all. When we first started this, I was hoping just to increase the brain-dead donors. I think there are a lot of issues as to both in terms of cost and fairness and so forth to do it, but that's the realistic question. I mean there's no point in dodging it. I mean why dodge it? The dodging question is whether or not we want to do something about organs or that the nation should. Or is it an ethical demand for us to increase these organs? It may not be an ethical demand. There are some things you just can't do.
But I think that's what we better settle. I don't think that trying to redirect UNOS or something like that is going to in the end mean anything. You could still write a great report saying this is where things are and this is what the answers are, but we don't think that you ought to take that. I think we ought to deal with that and I don't know that we're ready to make that decision. We've got another session coming up. I don't know whether we're going to make that decision or not. But that is what I think we have to deal with.
CHAIRMAN PELLEGRINO: Dr. George?
PROF. GEORGE: I would be grateful if Nick could say a bit more about the way market forces affect things under the current dispensation, the current scheme of regulations and norms. And in particular, Nick, if you could indicate if there are any points just on the descriptive analysis. I'm not asking whether you agree with Richard Epstein's policy prescriptions, but we heard the fascinating presentation he made and part of it was just descriptive about the role of market forces in the current regime of regulation.
Do you agree with the description, is that uncontroversial among scientists and does the controversy only come in when we move from the descriptive to the prescriptive or are there points on which economists disagree amongst themselves descriptively?
DR. EBERSTADT: You can always get economists to disagree, but I would say that probably descriptively the core insight that Richard Epstein brought to us two sessions ago was that a — whatever you would call it, a marketization, a commoditization of organ donations and transplants might bring a substantially greater supply of organs to the fore, to the situation.
He posited in his discussion, he did not prove, he posited that such marketization would have no impact on the existing generosity or altruism of persons who are already involved. That's an empirical question, not one that can be posited. But I would think that that was probably the — that would have been the central issue that economists would have noted in his description.
PROF. GEORGE: And is that the sort of thing that can be known with some degree of confidence or is it just necessarily a guess because there's no way to test it or do an experiment that would enable us to reach a secure conclusion?
DR. EBERSTADT: I suppose in places like Iran and elsewhere there are on-going market experiments which would provide some sort of very distant or in the case of China somewhat appalling metrics to this.
I don't know that one could —
PROF. GEORGE: It would have to be very distant indeed, wouldn't it, just because generosity would itself be colored by and influenced by so many cultural factors.
But is there a way — do we just have to go with Professor Epstein's gut or with our own gut when it comes to making a judgment about that or is there any way that our knowledge can be more secure?
DR. EBERSTADT: I think that if you asked different specialists in health economics, they might be able to come up with some, if you will, some sort of proxy parallels to this or some other analogies that might be informative without actually running the human experiment that we're talking about. It would, of course, be speculative. It would have to be speculative.
PROF. GEORGE: Do you yourself have a view on this? I realize you say it's necessarily a speculative one, but what's your own, do you think Epstein's probably right about that?
DR. EBERSTADT: My guess is that he's — that in the descriptive sense, he's right. I just don't have any idea of what the coefficients would be on any of that and let me also say, Robby, in talking about market forces, market forces are always a tool. They should always be a tool for society as they should not be the master of societies.
We know that in other areas there are things that we don't commodify. We don't sell our children. We don't sell people into slavery. The question is to what extent would economic reasoning and market forces improve the objectives of society rather than dominate them?
CHAIRMAN PELLEGRINO: Thank you both for the comments. Bill? Dr. Hurlbut?
DR. HURLBUT: This may have been said before. I came in a little late from lunch, but this is a very broad comment, but it seems to me that one of the things that should be relevant to the allocation system is first the way we want to frame the nature of what we want to encourage by way of attitude towards donation. It seems to me that if the generosity concept is fundamental, then the kind of dialogue you were having earlier about the local environment makes more sense. Of course, that's already happening with live donations, designated donations, but it could also play a role in the larger process of any kind of allocations.
It seems to me that as we've reflected on this subject for the last several meetings that one thing that keeps coming down to my mind is this intangible element that's in the economics of all of this.
How can you best balance both the moral goods, the medical goods and the economic goods? Even if you were just trying to write a realistic equation without giving any priority to those, you still might come up with something that would put a very strong priority on the generosity factor in which case your allocation system might be somewhat different.
CHAIRMAN PELLEGRINO: Dr. Meilaender?
PROF. MEILAENDER: Just a very brief comment about sort of this material again, thinking about the conversations that have just taken place. It seems to me that as I think about what we might produce by way of a report, if we were to decline to endorse the notion of some kind of market in organs which I hope we would decline to endorse, but I don't know, we've got to see what as a body we did. But just hypothetically, if we declined to endorse that, then that establishes the context for this material as not just a kind of clear explanation about what we're doing right now, but why we're forced into such a complex system, namely that another way of trying to solve an allocation problem that we use for all sorts of goods and services doesn't seem acceptable here.
And so we not only — then it's not only a sort of explanation of what the system is, but it clarifies why. We've been pushed to this complicated way of dealing with these several different kinds of moral considerations in allocation because in this particular case it seems inappropriate to buy and sell. And that, to me, I mean it just puts it in a context that would make sense of what this stuff is about.
CHAIRMAN PELLEGRINO: Further comments? Alfonso.
DR. GÓMEZ-LOBO:This is an information question. I don't know if Dan or someone else can answer it. What do the waiting lists that are part of these so-called crises look like? In other words, is it the case that they're being inhabited more and more by elderly people? In other words, is there an age distribution such that people waiting for organs are people of advanced age who thanks to modern medicine have not died of other illnesses before? Do we know anything about the distribution of the waiting lists? Because that would bring the crisis into a broader context, similar to what we did in the report on aging society.
DR. DAVIS: I don't have the exact statistics, but I believe the bulge is in middle ages, not older and not younger, but 35 to 50 and 50 to 60-65.
DR. GÓMEZ-LOBO:Why do you think that is?
DR. DAVIS: The bulge is in the middle.
DR. FOSTER:In fact, you can get around it, but in heart transplant, there's an upper limit of age in which you can — in which they will normally accept to doing. It's not a real old age. It may have changed a little bit. The last time I looked at it, it was about 60 years, is that right, for hearts? I think 60 years. So you're not talking about old people for hearts here. You're talking — and it has to do also with — we were just talking at lunch.
I mean the longest, as far as — Tom Stossel, one of the great transplant surgeons out in Pittsburgh, has said recently that the longest kidney he had transplanted went 37 years and I've personally seen 32 years. They just wear out. It's just entropy. They don't get rejected. It's not a rejection. But hearts don't last that long. You're talking about a few years, you know. Maybe five years or something like that. So there's limit there.
I think the kidneys would be just as Dan said, but it's not an old folks things here.
DR. DAVIS: I will clarify that for you, Alfonso, and distribute those statistics to you.
CHAIRMAN PELLEGRINO: Other questions or comments? Issues that haven't been addressed that this raises?
Why don't we have — for once, we have more time than we have used, but I don't think that means we need to go on. We can break a little earlier and return a little, say at 3:30. Is that acceptable?
Before I do that, let me just once more... are there further questions here? It's a very important issue and this infers big questions as you all know and have raised those questions.
Could I ask this, just for the moment, what part of the report, this summarization should we explore further? We've had a few suggestions. Have we exhausted your suggestions on where we need more data or need more consideration?
And a second question would be are we anywhere near this being some kind of a report or white paper or anything of that kind? I'm being a little provocative here, but I'd like to get your opinion.
PROF. MEILAENDER: I am only going to repeat myself, but I see this part of a larger project that would both explain what the current system is, but how I was thinking about this discussion between Peter and Robby and Nick and so forth that would help to clarify why one is forced into these impossible trade offs between utility and equity, for instance, and so forth, forced into it because if you've got a shortage of a desired resource and some other way of solving the shortage is ruled out, then you're stuck with these complicated questions.
It seems to me in that sense it would be a very useful part of a report. Whether we're going to have something more to say about the geography question that Alfonso is worried about or something, that I don't know.
DR. HURLBUT: Would it be reasonable to ask Eric and Dan to make some comments after working so hard on this what they see as the valuable ways to approach further discussion and what kind of report?
CHAIRMAN PELLEGRINO: No problem. Dan?
DR. DAVIS: I don't want to back off, but I think that question would be better posted after the next session because the next session is really the session where we lay out what's the current policy landscape and what are the proposals that are now on the table and I think we'll do a better job of responding to that question after that particular session.
So my suggestion would be that we postpone that.
CHAIRMAN PELLEGRINO: Postponed. Well, let's break and reassemble at 3:30.
(Off the record.)