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Thursday, February 15, 2007


Session 2: The Ethics of Organ Allocation: Policy Questions Concerning Geography, Age, and Net Benefit

Staff Discussion Paper - Policy Options for Council Consideration and Possible Action

 

DR. PELLEGRINO:  I think we can reassemble, if members of the Council will come in.

(Pause.)

The next session is dedicated to the question of organ allocation which is running through all of the discussions, of course.  We move from the philosophical now to the practical, but they're never separable.  I presume we'll remember that.

I'm going to ask Dr. Eberstadt to start off the discussion.  Dr. George isn't here yet.  He usually comes by train and I hope he hasn't had too much difficulty. 

Dr. Eberstadt, will you take us off into whatever direction you think we should move at the outset?

DR. EBERSTADT:  Thank you very much.  This fine discussion paper focuses us upon questions of efficiency and equity and allocative algorithms as regard organ allocation.

When one is talking about allocation and efficiency and equity, these themes take us very quickly into a slightly more distant realm, but not in the relevant realm, I think to our discussions which is the realm of economic reasoning and economic processes which are not touched upon directly in this discussion paper, but I think — I don't think it would do injury to our discussion to cut directly to this part of the chase.  So I think our discussions will focus upon some of these questions in this session and further ones.

Broadly speaking, the economic process is a process of maximizing human welfare or attempting to maximize human welfare under material constraints through exchange transactions and through choices about allocation.  And when the economic process as just described is at work, economists expect a couple of sorts of results to accrue.  One set of results involves a certain sort of efficiency, an efficient allocation of commodities, of assets and also if one accepts the initial starting endowments of assets and commodities of the actors in question, one expects also for a certain sort of equity to result. 

And in one strand of economic thinking, this type of equity is referred to as Pareto optimality which is a notional concept in which one person's welfare cannot be improved without diminishing the welfare of someone else.

Now as we have already discussed this morning, an economic mechanism or market mechanism entails a commoditization of assets or items and as we've already discussed, there is certainly with human body parts, ample opportunity and risk for self-mutilization, self-degradation and demeaning or diminution of some sort of humanity in such transactions.

There is something else that happens in the workings of the ordinary market mechanism or an economic process besides commoditization, just less seldom discussed.  And this is transmission of information, transmission of information about personal preferences, human preferences, and that modulated sense, desires.  Any sort of algorithm of the sort that's discussed in this discussion paper and other ones is a preference function.  Economists would say that's a preference function, but it's a preference function set by a single actor, in this case, by the state actor.

And economists will tell you that there are certain characteristics and attributes of single actor preference functions.  It's in the unhappy workings of certain economic systems, it's what one saw in central planning systems, in Soviet-style planning approaches.  And one of the risks to an economist of a single actor preference function is that one is likely to have either gluts or queues, either gluts or shortages that emanate from such an algorithm.

A more market-like process of determining an algorithm inherently brings more information about personal preferences to play and even in an open society it's not clear that a single actor preference function can entirely mimic the results that one would see from a more market-like process.

Now as we've already discussed in our first — we've already talked in our first session about some of the concerns and, I think, legitimate worries that members on the Council and members of our society have about the march towards commoditization of the transfer of body parts in the United States and internationally. 

And I think we'd have to say that if the horse hasn't exactly left yet, the barn door is already pretty wide open and we've talked about different aspects of this already this morning.  There already is a market in the United States and elsewhere in certain bodily components.  We've mentioned blood.  We've mentioned eggs, semen.  We could add, we could mention bone, tissue, skin, which is defined in some government documents as an organ.  And with respect to non-regenerative body parts or organs, we already have something approaching a market in rentals.  Rent-a-womb for production of babies and with the prospect of further technological advance, it may not be so fanciful to think that we'll be speaking about the prospect of rental of other nonregenerative organs in the future, rather than permanent assignment.

It may, at the moment, seem fanciful to talk about renting a kidney or renting an eye, but I don't know whether that will seem so fanciful 20 or 25 years from now.  So this line, perhaps between permanence and impermanence may be blurred even further by innovation and technological advance in the future.

Although we've already gone rather far in this process of commoditizing the human body, there arestill things that overwhelmingly make ordinary citizens in our country recoil.  And we mentioned some of those already in our discussion this morning.        We don't think it's cool to allow people to sell themselves into slavery.  We don't think it's cool to allow our daughters to be sold into marriage.  And although we have an active discussion about whether prostitutes are sex workers or not, we still don't think it's cool to allow a child to be sold for sex. 

So the question is at this fairly late stage in the game, where do we, as a Council, see the legitimate role of market or market-like functions to be in this question of the transfer of human body parts.  What is fair game for the definition of the human welfare that the economic process will set automatically about to maximize and where can we and where should we draw the line about the sorts of processes that economic functions might see to make more efficient?

I'll stop there.

DR. PELLEGRINO:  Dr. Kass?

DR. KASS:  I don't know, Mr. Chairman, whether you want sort of more general comments or whether you would welcome some discussion of some of the particular pieces after Nick's very fine, sort of review.

DR. PELLEGRINO:  We certainly would like to get to the specifics, if possible, but the general would be useful as well.

DR. KASS:  I do want to go, I think, to the specifics and in particular the age question which it seems to me is especially if the take the longer range view of going to be critical, between 1998 and the year 2005, a five-fold increase in the number of transplants of people, are now for people over the age 65 and the numbers are going in that direction.  Almost 60 percent are age 50 and over.  And I gather that age figures somewhat in the algorithm already, at least with respect to kidneys, with respect to pediatric candidates, restricted to donors of a certain age, if I'm not misunderstanding where we stand.  But I think this would be a hard thing to sell as a matter of absolute principle and there would always be exceptions that would lead one to want to deny it.  But it does seem to me that there ought to be some way of expressing — I'll speak — this is simply my own view. 

I think there ought to be some way of expressing the preference that age should increasingly count increasingly more and in a negative sense.  Not only because of the net benefit where the age figures into the calculation of the net benefit, but primarily really on something like the argument that has been developed here, the fair innings over a lifetime kind of argument.

Carl Schneider's very moving story about the son and the father, those are conversation-stopping and refutations to any other kinds of thoughts, but in general, I am much more sympathetic to a father who would want to give his kidney to the son than the other way around.  And as a matter of social policy, it seems to me that especially if we take Dan Foster's general premise, premature death is what we're after, that we ought not in an aging society, which many, many more people on this list are going to be, who have had their fair innings, that we ought to find some way to correct for that kind of tendency and I don't know whether people agree with me on this or not.  But that was the strongest thing that I got coming out of this.  The geographical thing doesn't bother me very much.  But on the age thing, I think especially to see where we're going, and I would hope we have at least a vigorous discussion of this and see whether there's an agreement on some kind of formulation principle.

DR. PELLEGRINO:  Thank you. 

Janet?

DR. ROWLEY:  As one of the older members of the Council, I support Dr. Kass.

DR. PELLEGRINO:  Thank you.  Dr. Kass?

DR. CARSON:  I think what Leon brings up is vitally important, as our knowledge increases and our technological abilities advance.  When you think back to the last turn of the century, not the one we just went through, the average age of death in this country was 47 years.  Now you can reverse those digits and still add a couple. There's no reason to think that that's not going to continue.  At some point it becomes deleterious to the subsequent generations if all of the people continue to live who have all the money and all the power.  That's one aside.

The other one being vitality.  As a person ages, obviously their vitality decreases and when it comes to the allocation of organs, it seems to me that we would want to allocate them in such a way that we achieve the maximum for our society, so I don't think really that this is — I mean if somebody has an alternative view, I would certainly love to hear it, but I can't imagine why there would be an alternative view to that.

DR. PELLEGRINO:  Thank you.

Gil?

PROF. MEILAENDER:  Let me stretch the limits of your imagination.

(Laughter.)

We should, at least, think through reasons to go in the other direction from the one Leon sketches.  He may not be entirely surprised to hear me think it through from this angle.  I realized as I worked through, especially I think this staff paper, I realized that actually thinking as I do about the issues we talked in the first session, I'm not really — I understand about the change, but what I'm about to say — I'm not really very content with the system that makes equity and efficiency the two criteria, because I'm not very happy with the criteria of efficiency which inevitably leads you to think of organs as resources, to be efficiently or inefficiently distributed.

So that from the start, I came to realize I'm actually inclined toward a view which would say make a medical determination about who is able to benefit from a transplant and who is not.  I mean obviously, you can't transplant a kidney into somebody who can't really benefit from it.  Make a medical determination about that and then have a lottery, among all those — a perfectly equitable procedure.  Maybe not as efficient as some others, but perfectly equitable.  And it is a way of treating people equally.

I realize — and I don't want to press it too hard because I understand the — I think the fair innings argument also has a certain kind of compelling force to it.  And I think really the reason it does is because you can look at a human life and actually should look at a human life from both of two angles, not just one or the other as a kind of a finite life that has a trajectory over time and it's different to be 35 than 65.  And as a life in every single moment is equidistant from eternity.  And therefore is governed by those temporal categories.

A lottery approach or equity alone, let's just say approach, thinks of lives as equidistant from eternity, not just as stretched out over time.  So it's not that I sort of want to go to the wall arguing against some kind of fair innings sort of argument, but I think there are powerful reasons not to be drawn to it.  I think it is part of a general argument that inclines us to think about efficiency in relation to organs in ways that may be a little incompatible with the way I'd like to think about them in general.  And therefore sort of a reluctant — just not strong opposition, but it's reluctance to just be drawn into that.

DR. PELLEGRINO:  Peter?

PROF. LAWLER:  Let me sort of agree with Gil on this insofar as this equity thing seems to me so difficult and accept as a lottery which at least is democratic. 

For example, I agree that there is something creepy about the general tendency in an aging society for resources to go from the young to the old which is — which will be, in general, our new principle of redistribution.

So if a son or daughter gives a kidney to a parent, that's fine as an act of generosity, we can have no opinion on that.  But as a matter of public policy, a distribution of kidneys that gives, in general, sends young people's kidneys to old people or healthy kidneys which are, at the moment of death, healthy even though the rest of the body is not in such good shape, to people who are old and messed up in many ways, also seems to me to be perverse and so I'm against this.

On the other hand, to go down the equity road a bit more, that might mean that a fine upstanding person with 2,800 people dependent on his who is 70 and is otherwise in perfect health because of a stern, physical regimen this person has had his whole life, and because of the great work this person is doing in so many areas of society doesn't get a kidney over some 35 year-old bachelor slob who needs a kidney because he's abused himself in any way since he was 12.  And so that doesn't seem fair.  And once you acknowledge that, you start to acknowledge that any kind of formula you're going to have is going to be deficient and a lot of this algorithm stuff is kind of pseudo science.  I'm not against it.          I'm not criticizing the way they do things, except there's a deep arbitrariness beneath the surface, as Gil pointed out, so there might be something to this lottery thing.  That once you're shown to be able to benefit from a kidney, why finally can we make too many judgments beyond that that aren't, in some deep sense, arbitrary at the end of the day.

DR. PELLEGRINO:  Rebecca?

DR. KASS:  Could I just ask a question?

DR. PELLEGRINO:  Yes.

DR. KASS:  Does that mean, Peter, that you would be in favor of our recommending that they do away with algorithms altogether, just do a lottery?

DR. LAWLER:  I'm not sure, but when I read about the algorithm it's so easy to say well, I guess, but.

DR. PELLEGRINO:  Rebecca.

PROF. DRESSER:  I don't want to change the subject, but I wonder if it would be easy to get rid of a few things so we could focus on the tougher questions.  The role of geography, whether being in the same region should somehow count for the recipient.  For me, I don't see an analogy between one's family and friends and people who live in the same state that I do.  I don't think that community is defined by living in the same region.  So I don't think that should count myself.

The other point is that to the extent that shipping the organs reduces their vitality, I think it should count.  So this wasn't clear in this discussion paper to me.  It almost sounded as though well, it doesn't matter, it could go from New York to California.  It wouldn't make any difference in the vitality of the organ and I think with cadaveric, it definitely does.

The other point I wanted to make, we're really not asked to do in the paper, but the paper notes this practice of registering in multiple centers and ever since I heard about that I thought that is really unfair and we shouldn't allow it.  I wonder if anyone has any arguments in favor of it or if the Council thinks we could at least say we don't think that's ethically justifiable.  It's unfair to people who can't manage to get on more than one list.

DR. PELLEGRINO:  Thank you.

Dr. Eberstadt?

DR. EBERSTADT:  I think that the argument for a lottery is a coherent and legitimate alternative to sort of a utilitarian calculus.  It has a coherence of its own.  What I would observe is if we begin to argue that a 35-year-old has more standing for a transplant than a 70-year-old, we have to explain why we are not embracing a utilitarian calculus here.

There are a lot of metrics which already exist in health planning and all of them are, although their progenitors may not have recognized this, they're all relentlessly utilitarian.

The calculus, for example, of years of potential life lost maximizing the years of life saved is intrinsically utilitarian.  There is a new, and in the view of its own inventors, an improved version of years of potential life lost called — it has the infelicitous acronym of DALY, disability adjusted life years.  You are supposed to sum morbidity and mortality into one sort of GNP-like perfect measure.

Simply to note, if we are going to say that age matters in allocations, I think we also have to say whether we are doing this for utilitarian reasons or for other reasons and to make this explicit.

DR. PELLEGRINO:  Gil?

PROF. MEILAENDER:  Not to take back what I said before, but to complicate it a bit, I do think that — and I believe when Leon started us it was the fair innings argument that you were using.  I think that's a little better than like just the net benefit possibility.  If you just think of human life years, you're not a part of some whole called human life years.  Individuals aren't. 

And that, I think is problematic in a way you were talking about, Nick, that maybe the fair innings argument isn't.  At least, if I'm forced to plump for some age-based criterion, the fair innings argument looks to me considerably better than some clearly net benefits approach.

DR. PELLEGRINO:  Dr. Gómez-Lobo.

DR. GÓMEZ-LOBO:  I'm sort of eager to come down on these issues one way or the other.  With regard to the role of geography, I very much endorse Rebecca's view.  I'm very skeptical about this idealization of community in the United States today.  I think that one of the reasons why democracy works is not because there are these intermediate communities of loyalty and fidelity — they simply don't exist.  We relate more or less directly to the state.

So in that regard, and if geography does not affect the vitality of an organ, I would say we should go for option 1, that is a unified system which also would ban the double-dipping, of putting oneself on two waiting lists.

With regard to age, I became convinced that there is a very important point of justice and equity here, which I'm afraid might not be solved by a lottery.  I'm skeptical of the lottery because a lottery is a fair procedure if there is more or less equal standing among the people who go into the lottery.  If there are uneven factors, for instance, if someone is extremely sick and you go into a lottery with someone who is not that sick and the person who wasn't sick wins, there seems — I would be concerned about that.

Now I just don't like Dan Callahan's view that there should be a cutoff point.  I don't see any way of reasonably justifying that, of saying everybody 65 years or older doesn't get it or so.  And that's why I'm inclined to endorse Option 3 in which we simply keep the algorithm, but do it in such a way that age goes into it with all of the other factors, but that it not be a deciding factor.

And with regard to the role of net benefit in organ allocation, I must overtly confess I haven't fully understood it, so I'm not sure whether I would support or reject the KARS proposal.  If someone can illustrate that for in a better way, maybe I would come down on way or the other.

Thank you.

DR. PELLEGRINO:  Yes.

DR. GAZZANIGA:This section is looking at the issues of geography, age and net benefit and so forth, is important because UNOS  has failed us in this area and that there are all kinds of discrepancies.  One knows about confined and you can — you may be four on the list in county, 326th on the next in getting a kidney or liver.  And so those problems, we're all aware of and one of the reasons we discussed open markets and the rest of it is to solve these problems by having another method of organ generation.

So the question I have is before we get too deeply into whether we consider age and how we bias these things and whether we rewrite the algorithms, is do we — if we vote on one of these options, are we implicitly supporting the UNOS position here and if so, I think some of us would choose not to vote on this, because we haven't dealt head on with alternative methods.

DR. PELLEGRINO:  Thank you.

Gil?

PROF. MEILAENDER:  A couple of comments.  I'm not — again, I'm not trying to push — the lottery idea for me is simply a way of thinking of helping to think about what we're presupposing in the system as it is right now, but there's a sense, Alfonso, in which in the most important sense everyone who could genuinely benefit medically from a transplant does have equal standing.  I mean when the issue is life or death, life as a whole comes into play and it seems to me that they are equal in the most fundamental sense there.  But then I wanted to comment on the geography question, just to persuade all of you that I'm out of it on these issues.

I think I'm the only person who's expressed any reservation or any sort of support or sympathy for the geography consideration previously, and I may be the only one still, but I mean there are a couple of things we're thinking about.  I'm not federalizing and thinking of it as a national thing is once again a way of thinking — I mean here we are, we've got this resource and we should see to it that it gets fairly distributed.  But we don't follow that out everywhere.  We certainly don't think that you shouldn't be free to give a kidney to somebody in your family, for instance, that's wholly apart from geographic considerations.

In other respects, we don't follow it out.  We're not pushing to make this international, rather than national.  Now there might be some logistical problems right now, but those can be overcome in the long run and why — we're just human beings here, why stop at national boundaries, after all?  So that I think that thinking of us just as citizens of this country, as opposed to other localities, may miss something about who we are and again, it moves just in the direction of efficiency.  Gifts are not governed by considerations of efficiency only, after all.  So again, I'm not — I'm not going to go to the wall for this one.  This may be less important than the age one and less philosophically interesting.  But I would just not run roughshod over some of those distinctions in life.

DR. PELLEGRINO:  Dr. Hurlbut.

DR. HURLBUT:  I have some of the same sentiments that Gil does, just so you don't feel too alienated here.

(Laughter.)

I think that the ties of attachment also have their geographic kind of attenuation and I wonder if there's any — there are any practical studies on the effect of a national pool versus local donation.  It might be that people — that an individual might donate more readily to his local community.

It's true with financial donations, right, and requests to communities.  Could it possibly be true with organs?

DR. DAVIS:  There is no evidence about the argument that you donate, you'd be more willing to donate if you knew that individuals receiving the organs you donate were or are members of the same local community. 

DR. HURLBUT:  Is that because there are no studies?

DR. DAVIS:There have been no studies, that's correct.

DR. FOSTER:  But that's much more important, I suppose the community, if you're talking about living donors.  If you're talking about cadaver donors, I mean it's already drawn pretty much nationally and there are new companies been formed to improve the preservation of the organs while they're in transport, instead of just putting them in cold ice, you know and giving them so glucose so that there's some energy there.  I mean they're now treating them more like a bypass in coronary arteries.  So I don't think that we're going to have a problem of taking an organ to go to California and so forth, but already — so maybe, I think, Bill, if it's a community where you're giving living, I think you might be.  But I don't think that's operative right now in terms of the fact that the kidneys move all over.

DR. HURLBUT:  I didn't mean practical transport, I meant the feeling that invokes donation.  We just tend to feel related to the groups we dwell with and —

DR. PELLEGRINO:  Dr. Schaub?

PROF. SCHAUB:  Yes, on this and there might be more practical consideration.  Also, the staff report mentions that the smaller OPOs are hostile to the notion of a national waiting list.  I think that would be worth taking seriously.  If their prediction is right that they would be driven out of business, that would actually have a long-term unintended effect on the efficiency of this and it might decrease donations because now people have to travel farther to do it.

DR. HURLBUT:  You know, one thing that was mentioned later in one of our documents is that some states have compensation for donors in ways that other states don't.  And there again, the local environment is deciding that.  Shouldn't they, in some way, benefit from their policies?

Dr. Eberstadt?

DR. EBERSTADT:  This isn't only a mischievous question, but it seems to me that you and to an extent, Gil, have raised the question here regarding geography of what one's — not only what one's attachment is, but what one's affiliation is and that bears on the question of what your identity is, I think.

If we were to think about geography, as a component, would we also think about ethnicity and if we were not to think about ethnicity, why not?  How does that — how is that qualitatively different from consideration of geography?

DR. PELLEGRINO:  Bill?

DR. HURLBUT:  I thought about that when we were talking about paired donations and list donations, because it struck me that both for efficiency purposes and for connected purposes, I mean if you're really going to do an equation for efficiency, I made a list of considerations.  There are differences in life expectancy based on race, education, sex, lifestyle things like obesity, smoking, driving record.  So why not put those into the efficiency equation?  Well, we won't because we sense there's something wrong with that and I think that's the answer to your comment.

On the other hand, I think we would also feel something odd about list-impaired donations that were only say to members of the AAAS, for example, or your local church or something like that.  Something feels wrong about that.  But maybe we should explore that.

DR. PELLEGRINO:  Dr. Dresser?

PROF. DRESSER:  Just to push this, I do think living donation situations are different in terms of region and that if a living donor prefers to give to a friend or family member, yes, I think we should support that.  But if I were donating a family member's organs, and I happened to be in a small region and there were only five people on the list so the organ would go to someone who didn't have as much ability to benefit or wasn't in as much need as someone in the next region over, I would be unhappy about that.  I would rather that it went to someone who was in greater need than someone in my region.

DR. PELLEGRINO:  Other comments?

Leon?

DR. KASS:  I mean if we're staying on this geography thing just a little longer before going to back to maybe the more difficult one, I think professors and intellectuals are among the cosmopolitans and don't feel that kind of attachment to place whereas — especially with regard to living donations.

I think that there are identities that people identify themselves with their small towns and with their small communities and the likelihood of mobilizing that — especially if we're thinking now about the spirit of giving that might move people, I think it's a lot easier, as it is with charity, in general, to mobilize people for things closer to home, however much philosophically we might sort of see that we're really all part of some totality.

That's partly why I don't come out where Rebecca does on this one.

DR. PELLEGRINO:  Alfonso?

DR. GÓMEZ-LOBO:  This may be a question for Nick.  How realistic is the reference to small hometown?  I ask this really from my own experience.  When I came to this area, I lived in a place where the normal turnaround in school was almost 30 percent.  I mean it was a totally transient population and if I look back, I would say I had no links to virtually anyone just because they lived there.  Anybody that lived there that I was connected to was due to being at the same university or something of that sort.

That's where I'm a little bit scared that we're looking at this in a sort of romantic view of New England township in the mid-19th century or something like that.  Is that realistic?  Is that a realistic view of how we live today?

DR. PELLEGRINO:  Peter?

DR. LAWLER:  Gil raised the objection, I think, to regarding kidneys as simply resources to be distributed most efficiently.  But they, in fact, once we reach this point, that's exactly what they are.  There's just no getting around that.

So all the comments have been made as far as I can figure are speculative concerning what we generate, the maximum number of kidneys and distribute them most efficiently.  So you have these speculations concerning importance of regional attachment and all that.

And then the practical objections to a national market raised by Diana and Bill, which seemed pretty powerful, but they are practical objections related to efficiency in terms of generating the maximum number of organs and really nothing more. 

And so Alfonso's comment and all that, is it realistic?  Will we have to have a study that shows whether it's realistic or not.  We really don't know.  I mean we seem to have different opinions on this.

So the bottom line seems to be this geographical thing, what to do about it, cast in terms of what is the most efficient way of maximizing the number of kidneys.  I don't see anything else really going on here at the end of the day.

DR. HURLBUT:  I want to clarify that I didn't mean only in the matter of efficiency.  I think it had something to do in my feeling with the whole relationship of donation itself.  So it wasn't just what would maximize it.  That was another consideration.

DR. LAWLER:  Okay, I forgot about that one.  The one I was asking about is  different states have different policies and some policies are more generous to donors, shouldn't those states reward those policies?  That to me was a good practical objection to a national policy which could be eradicated by national policies with respect to how donors are treated and all that.

So I have no answers to any of this except to say I'm suspicious of the regional attachment thing as an independent variable here.  I'm open to the possibility that it might — these practical objections might point in the direction of some geographical criteria is more efficient.  But I have some sympathy too with Alfonso's objection that all of these comments might have been a tad romantic, all things considered.

DR. PELLEGRINO:  Professor Schneider?

PROF. SCHNEIDER:  I first want to say that I live out in the country in Michigan and there's nothing particularly romantic about it, but it's also true that a very large number of people live within 25 miles of where they grow up, even in the United States today.  And I always worry about this fabulously unrepresentative group trying to imagine how the world works by thinking about their own lives.

But I'm not sure if I'm extending Peter's point by saying that I have become very uncomfortable with this discussion.  We're talking about quite an elaborate system that tries to balance a whole lot of things that we have very weak grasp on.  And we're talking about making public policy here by quickly reading some intelligent comments about a few parts of this large operation.

And I've been moved by a number of things people have said.  Despite the story that I told, I agree with Leon and I'm sure that the father would have much rather been the one to be able to benefit his son.  Nevertheless, to go from those sensible and even right comments to giving the country advice about how it ought to make this complicated system work, makes me, particularly as a lawyer, very nervous.

DR. PELLEGRINO:  Dr. Foster?

DR. FOSTER:I think I mentioned this in the previous discussion about geography, but sometimes the geographical thing, the motivations there are not for fairness in the distribution, but for money-making purposes in the hospital.

If you live in Dallas County, as opposed to living in Fort Worth, you have a five time longer waiting time to get an organ.  The biggest public hospital in Dallas is called Baylor University Hospital.  So they built a new hospital across the country line in Grapevine, Texas because they could get many more transplants done quickly there than in the City of Dallas.

Now in most major centers, the most profitable thing in a hospital is transplantation.  Now a lot of that is bone marrow transplantation.  But at the Mayo Clinic, the most profitable thing is transplantation.  So geography was impairing the ability of the Baylor Hospital system to make as much money as they wanted to make.  It had nothing to do with the people who are waiting in line on the other side.  So there are other things that are maybe a little unfair in terms of geographical distribution that are not related to the donors or the patients themselves.

It isn't sort of a fair thing that you can get a liver a lot faster if you live in Jacksonville and you go to the Mayo Clinic there than if you live in places that might even be better equipped to do it.  So I don't think this is a trivial thing to say well, okay, let's just — people live within 25 miles of where they do to do it.  I think — and probably, you know somebody like that, someone could do it.  But we could at least weigh in to say that there ought to be serious thought given to equalizing the changes of getting organs just in the sense of fairness and justice, it seems to me.

DR. PELLEGRINO:  Professor Schneider.

PROF. SCHNEIDER:  This brilliantly illustrates the point I was trying to make I think.  I am constantly being surprised that new things that I didn't know that strike me as enormously important in thinking about these sort of things and I've been repeatedly persuaded by almost everything everybody has said leads me to believe that I don't really know what I'm doing.

(Laughter.)

DR. PELLEGRINO:  Paul?

DR. MCHUGH:  I also agree with Carl that every time we have these conversations we learn more about the varieties of things that people can do.

I've always had an uneasy feeling that I've said several times before about these algorithms and things of this sort and since I've made this point before about Dan Callahan, I'll make it once again.  He's awfully ready to tell me what I can't do when I'm at the bedside of somebody who presumes that I'm working for him or her without judging the worth of my effort for that person.  This is what causes me to have all kinds of troubles about algorithms, age limits, things of that sort.

I am just thinking about what Carl said about that little family.  I mean a man age 60 who takes a kidney from a son age 30 is probably also the recipient of his son's allegiance and love thinking certainly if I could do that for my father when I was 30 and he was 60 and I could have him around for another 10 years, it would have been a tremendous help to me, given that after all, we emerge in the middle of other people's lives and our lives go forward.

So I'm very uneasy about all these matters.  But I just want to come, after all of that, I want to come around to the one thing that I thought was reasonable about geographical things and that was the possibility that therefore geographical regions could count on being able to get at least their local kidneys.  If we had a national policy where kidneys were directed towards a call, there would be great sinks of draw from the large cities and the larger states and smaller states might have their kidneys drawn from them because of that.   Again, the electoral college in this Council is a dubious thing to mention, really, because of things before.

But there's something to be said with the electoral college in the same way, that small states and large states have some kind of level of common equality.  And that's why I would be in favor of some form of geographical thing, given that I dislike all aspects of the algorithms.

DR. PELLEGRINO:  Gil?

PROF. MEILAENDER:  Just a comment on Carl's point which is a serious one, I think, as sort of — as a kind of chastening effect on where we think of going.

I mean there may be some aspects of this that there are so many factors involved in that that it would be difficult to be confident that in saying you should change this factor, you wouldn't actually be changing a number of other things.

There may be some parts of this staff paper under discussion though that it would be possible to have an opinion about that didn't depend on those sorts of considerations.  Now I don't know.  But for instance, the last option, the net survival benefit, the overall benefit conceivably one could object to that simply on the grounds that this was the wrong way to think about people's lives and distributing organs, whether or not it was more efficient or not.  That is, in fact, what I think.  I'm not saying that you should think that.  I'm just saying there's an example where I think in a sense in theory we could say something that didn't depend on a whole bunch of information that we either don't have or can't be sure that we understand correctly.

Some of the other things may be there wouldn't be any reasonable way to speak on them without a lot more confidence that one were clear, just about a bunch of empirical factors.

DR. PELLEGRINO:  Leon?

DR. KASS:  This is also to follow the conversation started by Carl's very sobering observations.  There are things here that are really at the level of principle is perhaps too lofty, but sort of general moral judgment that don't necessarily translate into the precise details of how you work things out.  But I think we could say something about whether and to what extent we think age or age beyond a certain point counts in these discussions and allow it to a more extensive conversation to figure out just how much weight to give it and Gil also said whether he has some concerns as to whether equity and efficiency are the sufficient principles for guiding a kind of algorithm, whether you like algorithms or not, for thinking about the ethics of organ allocation.

So mindful of those limitations, and here to pick a slight quarrel with Paul, Dan Callahan sticks his neck out to provoke a kind of discussion about limitations and he gets beaten up.  People are partly responsible, as I know very well for how they get beaten up unfairly.

(Laughter.)

But I don't think it would be preposterous for a nation having suitably debated this matter to say look, it was not immoral of the Brits to say we will not do dialysis on somebody after a certain age, even if it does mean that in certain kinds of cases the person has lots of people depending upon him and is the — that's a way in which a community could, as a whole, begin to decide difficult questions of allocation, of its scarce resources under considerations of equity and this is something I think we could say something about.

I rather like the fair innings view of the matter.  You guys figure out how to translate it into precise policy and then let the people argue about it, fight about it because that's what the political process is.

What we can do is, I think, weigh in on the moral principle and I don't know if there's anybody here things that in the end those kinds of general age considerations are irrelevant in this particular matter of allocating organs to an increasingly aged list of people who need it.  Janet has joined me.  There may be a few others, but I don't — are there people who disagree with that?

DR. PELLEGRINO:  Well, I — may I say a word?

(Laughter.)

As I think the oldest person in this room at 87, I can pop up and say a word about age.  For myself, I think we have come to a point where we must begin to think about some limitation, not only with organ transplantation, but all the other things that are available now in biotechnology.  There's got to be some kind of a limit.

The social impact of people being prolonged forever, the illusion of mortality which runs throughout our society is a consequence of biotechnological capabilities seriously raises the question, as you brought it up at the beginning, Leon.  Now where it should be, I don't know.  I don't want to establish any numbers, but for myself, I do think living within that age group would be most susceptible to a policy saying there's a limitation.  I do think the illusion of mortality runs very widely and we keep forgetting the fact about we're putting organs into total systems which themselves are fallible. 

And we're not really replacing someone's kidney and giving them the rest of their lives free.  That kidney goes into an organism which has a lot of disturbances going on.  And if you talk about regenerative medicine and the possibility, the Holy Grail of the regenerative medicine enthusiasts of being able to develop organs outside the body and then put them in, how many times do we do it?  What limit is there?

Just leaving aside the economic issue, I think we have to deal with the question of illusion of immortality that's beginning to invade the older, older people and I'm in that group and I understand it.  For myself, if you want to vote, I'm willing to have some limit put on the kind of entitlement I might have, people my age might have to endless supply of technological advances.  What it is, I don't know, but for myself I would state very, very clearly, I think there should be a limitation.

DR. FOSTER:I am also for the fair innings model of limitation.

DR. PELLEGRINO:  Dr. Carson and Dr. Meilaender.

DR. CARSON:This is obviously not a new issue in medicine.  If you look through let's say neurosurgical literature about trigeminal neuralgia and treatments for trigeminal neuralgia, there are whole lists of things that can be done, percutaneous procedures, medications, stereotactic radial surgery, cutting the nerve, or you can go microvascular decompression where you open the head and actually go down with a microscope and operate on the brain stem where the trigeminal nerve exits.

It's generally agreed that that should not be done on people who are greater than age 70.  Why is that generally agreed?  Because people over that age are prone to more difficulties, just because of the general state of their physiology at that age.  Is it ironclad?  Absolutely not.  I've done that operation on people as old as 90, under extenuating circumstances.  But the whole concept of having these algorithms is actually based on logic and we should recognize that with the caveat that there should be life savers.  There should be ways to bail out as necessary and I think that's the reason that we have brains, so they won't have to mindlessly follow some type of a maze.

DR. PELLEGRINO:  Dr. Meilaender?

PROF. MEILAENDER:  One of the times when we had Dan Callahan address us, I think we've had him a couple of times, actually, over the years.  I think I took him a little aback by saying that he was really a religious thinker.  I recall this.  But what I had in mind was that what he really wants I think and thought was that we should learn to change our desires.  This relates to your comment.

He comes at it with policy suggestions, but what he really wants is that we should learn to desire differently.

Now I think there's a lot to that in the sense that if I'm 75 and I could use a kidney and I do everything I can to get one and you regard that as sort of less than noble behavior, to use a favorite adjective of Leon's on my part, you know, it's probably not the most noble thing one could do.

It is a little different though if you're thinking about a public policy that attempts to treat people equally and then I think you have to — you do have to think about what that equal treatment means.  Now it doesn't necessarily mean identical treatment, but we do have to think about it and treating us equally is not probably designed to making us all act as nobly as we might.  I mean I don't know if that's what it involves. 

I mean Ben's comments again suggest that there might be just certain medical reasons that someone doesn't qualify but the harder question is once you've got your group of people who can medically qualify, exactly how you go about treating them equally after that while still making certain kinds of distinctions, at least some people would be inclined to make.

I mean I'm drawn to some of those distinctions, but I'm a little more — I haven't signed on yet in too quick a way.

DR. PELLEGRINO:  Peter?

DR. LAWLER:  That was more or less what I was going to say.  As admirable as Dan Callahan might be, he is a religious thinker.  He does have a certain opinion on human desires that we cannot turn into public policy really, so I wouldn't endorse Option 2 on page 6.  I'd be more an Option 3 guy who would see the wisdom of integrating age into a formula that included many other factors.

And there is a difference, a big difference between dialysis and kidneys, obviously.  What the British did may or may not have been immoral, but in our — and maybe we never should have established dialysis as an entitlement, although we really can't go down that road for all sorts of reasons.

But we can afford to give dialysis to everyone over 65 who can benefit from it as a matter of fact.  There's no scarcity in our dialysis resources, but in fact, there is a scarcity of kidneys, so the issue is really quite different.  So there would be reasons for denying people over 65 kidneys that wouldn't really apply to dialysis.  And so I do think age is one factor to take into account.  I have no objection to the thing as one criterion, among many.  But I wouldn't absolutize it on the basis of some doctrine concerning exercising hubris and a fool-hardy attempt to postpone the fate that awaits us all.  He is exactly right on this, but we live in a high tech society, basically secular, where we don't really seriously try to limit people's desires.  But there are other reasons besides that for taking age into account, that's one factor among many, I think.

DR. PELLEGRINO:  One interesting observation I have from this position here, listening to the conversation, you actually have been setting a very informal, but flexible age range when you talk about — not you, but anyone in general — that talk about well, I wouldn't have an objection to giving it to a 65 year old, but a 95 year old, you're setting a range here, there is an implicit kind of limit.  We don't know where it is.  No one wants to assign it.   But I think there is one.  And what we should do about it is something else.  I'll leave it to the Council as a group.  But again, I come back to this question of that underlying, illusion of entitlement to immortality and the failure to recognize our finitude.  How do you do that?  I'm not going to set that as a public policy.  But I think there are without any question in the minds of people around the table, some limits and it comes out in the way you give your examples.

Yes?  Bill and then Rebecca.  I don't want to miss anybody.

DR. HURLBUT:  In saying that, and I know this is a little beyond the scope for our report, but we might add something in that there are serious questions, even beyond the resources questions.

DR. PELLEGRINO:  Oh yes, very definitely.

DR. HURLBUT:  And also you introduced an interesting idea that I had actually intended to introduce earlier.  I think that there are differences between some kinds of interventions and others.  If, for example, we get to the point where we can grow all organs, tissues and cells, apart from the body in factories, we still might not want to do some things versus others.  And the meaning of transplantation might depend on the nature of what the organ is and what the system — to give a blatant kind of example, suppose we could grow gonads outside the body, which does not strike me as a technically impossible task.  Would we feel comfortable doing that?          

And there are other organ systems, certain brain parts, for example.  It's established you can do superchiasmatic nucleus transplants in hamsters and keep them alive longer than their cohort, if you take fetal superchiasmatic nuclei.  That is a kind of transplant you could conceivably do to human beings and Ben can tell us if this is over the edge.  But suppose we could do that and just with a very small injection, upgrade the circadian rhythm centers of our bodies like a tuneup.  Maybe that would be a good thing.  But maybe on the other hand, it wouldn't.  So we should at least include in our report some reference to the fact that all transplantation is not just a matter of efficiency and resources.

DR. PELLEGRINO:  Rebecca?

PROF. DRESSER:  I'm worried that that we're not giving the staff very much help on reaching closure.  Maybe we're coming around to something we could agree on with age and I guess there's dispute over regions and geography.  Quality of life is the other main factor in allocation discussed here.  We haven't talked very much about it.

I don't know that much about this index so I'm not comfortable endorsing it or opposing it, but I guess I am willing to say that quality of life is sometimes appropriate to take into account in allocating organs, for example.  I understand that some people in persistent vegetative state are on dialysis.  I would be opposed to putting them on the list to get a kidney because of quality of life concerns.  Maybe — well, advanced dementia, advanced Alzheimer's, they probably don't have a long lifespan, but someone who say has had an extremely severe stroke, I would prefer the organ go to someone who is at least somewhat conscious and functional, able to relate to other people.

So personally, I would say it's not always inappropriate to take quality of life into account.  I think it's very difficult to decide when and how to do it.

DR. PELLEGRINO:  Thank you, Rebecca.  Anyone else?

Paul and then Dr. Eberstadt.

DR. MCHUGH:  Just briefly, my problems with Dan Callahan probably do relate to the fact that he has a religious point of view, but his religion and mine are different, I suppose, so hence my visceral reaction to him.  But I was trying to think again and again in relationship to what Leon and other people have said.  Again, it comes back to the idea of who is going to deliver this message and in the process of trying to deliver messages to our patients, to my patients, I'm trying to deliver the message that I'm not judging the worth of them in relationship to my efforts.

I do agree that age and the life span and the innings are important things to keep in mind, but like Ben, I want to keep it in mind, not have it be fixed in rules.  And then finally, there is an important thing to be said about age.  There's certain kinds of things that age can be done at other ages you can't do.  I remind you that we old folks depend upon the youthful military to protect us.  They put their lives at stake so that we can live the kind of free life we live.  And we understand that.

So various kinds of situations come up that mean that how we see what we're doing differs in relationship to the goals in front of us.  So I just want to say that the more it can be seen that this problem ultimately will be resolved only when we get the resources to care for all of the needs and as I've said it several times in these meetings, xenotransplant.  Dan tells me maybe it's a long way off, but it's obviously the only thing that's going to solve all these ethical problems.

DR. PELLEGRINO:  Dr. Eberstadt?

DR. EBERSTADT:  I wanted to ask Leon a question about fair innings.  It seems to me as a concept of fair innings is very useful in clarifying thinking in this particular instance where we've got a palpable shortage, obvious rationing question.

But I'm wondering how generalizable Leon sees this.  In the final analysis all medical resources are limited and is this a — do you see this as a generalizable precept for other areas of health care treatment and consideration?

DR. KASS:  Well, this is not the first time this question has come up here.  It was very much central to our discussions about the care of the elderly, crisis of long-term care.  No one has been more eloquent in the need to attend to the unspoken foreign needs of medical and psychiatric needs of children than Janet.  This has been one of her themes, really.  And lots of us haven't spoken up because we've agreed with that kind of sentiment.

And the chairman's comments, too, I think, suggest this may not be unique to this area.  It is an extremely difficult thing to do, not just as a practical matter because the octogenarians are in Congress, but as a cultural matter, one doesn't — because we do somehow believe, whether you put it in Gil's religious terms or not, but there is a kind of equality that comes to life and death questions and no physician standing over a bedside of a patient should be compelled to say I'm sorry, you're too old, I will sort of care for your needs as you happen to be now.  But it may be more dramatic in the case of organs where the donors are clearly the young and where unlike the case of the military where you can say there is a coherent national purpose for which such sacrifice one hopes is being made, here the individual deaths of each of us or all of us collectively are not a natural disaster.  They're, in fact, the condition of possibility of renewal.  So, if you somehow, in this particular case it sort of strikes one as very dramatic to say we're asking somehow the young to support the old after the old have had fair innings, you could translate that in terms of taxation and other sorts of things into other areas and it might very well be, and if it's true that we're going to have to face this question and perhaps set some kind of limits, that some notion of a fair innings might be generalizable into other kinds of conversations, notwithstanding the fact it's practically a hard sell and it's got strong philosophical arguments on the other side.

DR. EBERSTADT:  I'm not asking for an algorithm. 

(Laughter.)

I was just wondering about consideration.

DR. KASS:  It's a very welcome question so we don't simply think that we're treating some kind of unique situation here, rather we're treating a very dramatic instance of something which has generalizable equitability.

DR. PELLEGRINO:  Dr. Rowley?

DR. ROWLEY:  It strikes me that transplantation is something that we'd been discussing as a council off and on for a long time.  And we haven't really until this point of having the staff papers to discuss sort of come to the point where we may offer the country some advice. 

And I think that Carl's sort of cautious view — why has it taken us so long to come to this point?  And I think it's partly because of the difficulty of the issue and the question that at least some of us have as to whether we can really advance the understanding in the country or whether we have something to say. 

And I feel very uncomfortable in part of this because I think that what we have to say is related to the ethical issues.  I think what we have to say is less related or I won't say related, but maybe less valuable in some of the specifics, like age and geography and some of the later chapters, particularly the one we've already discussed on market for kidneys.  Because I suspect there is also a very divergent opinion.

So it seems to me that we do have to wonder about our competence to make statements in certain areas and deal with it very cautiously.

DR. PELLEGRINO:  Thank you.  We are at the 12 o'clock time.  We'll allow one or two more very quickly, but it will cut into our lunch hour.  That's not a restriction, but only a precautionary note.  I think it appears that you all want to go to lunch.

DR. ROWLEY:  Yes, but then there are a number of options that I thought you were wanting some input on.

DR. PELLEGRINO:  Yes.

DR. ROWLEY:  No, but do you really want the Council minus Mike to — and others who aren't here, including Floyd, do you want some expression of opinion or not expression of opinion?

DR. PELLEGRINO:  We want as much input and as much specificity as you feel you can give us at this particular point.  I think our task always is to lay out the alternatives clearly and objectively as possible.  We don't make the policy, but we can certainly point the direction where policy ought to go, we think, if we have agreement.

So yes, we are interested in as much as we can say about it and feel confident about it.

Does anyone want to carry Janet's question further?

Well, I think —

PROF. SCHNEIDER:  After lunch?

DR. PELLEGRINO:  Excuse me?

PROF. SCHNEIDER:  After lunch?

DR. PELLEGRINO:  We can do it after lunch, but hold on, Leon has a comment.

DR. KASS:  It seems to me that — the particular issues, in my view, are probably too complicated to say simply let's go around and have a vote on each of these particular items.

DR. PELLEGRINO:  We're not planning that.

DR. KASS:  It does seem that maybe procedurally what Janet is implying is — I mean you get some sense of where the people who have spoken are at least on those issues where they have spoken pointed to some recommendations.  We always, I guess, have the right to dissent and write independently if there are any kind of positions taken.  But perhaps you and the staff could solicit, when you sort of formulate what you take to be the recommendations of the Council, we then have an opportunity to even before that to weigh in, to give some guidance, but at that particular point to see where, in fact, we stand.

Is that —

DR. PELLEGRINO:  Very definitely, Leon, that is what we had in mind by pointing to these somewhat more concentrated papers than we've had previously.   And to try to focus in, so to speak, as if there are pilots focusing on the beam and trying to find the runway.  And from time to time you have to waiver before you can get to the runway.  And I think that's where we are at the moment.

Yes, that's what we'll try to do and submit it back to you, obviously.

To answer Janet's question, we want as much guidance as you can give us from the control tower, so to speak, as bring this plane to landing.  It's a very poor analogy.

(Laughter.)

Thank you very much.  Have a good lunch.  Be back at 2 o'clock.

(Whereupon, at 12:05 p.m., the meeting was recessed, to reconvene at 2:00 p.m.)


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