THURSDAY, APRIL 20, 2006
Session 1: Organ Procurement and Transplantation
Robert Veatch, Ph.D., Kennedy Institute of Ethics and Department of Philosophy, Georgetown University, Washington, D.C.
CHAIRMAN PELLEGRINO: And our first speaker will be Robert
Veatch, whose name will be known, I know, to many of you, a colleague
and friend of mine, and again, we will keep our introduction extremely
brief. So brief that I will give you only his present title: Kennedy Institute of Ethics and Department of Philosophy at Georgetown, as well, who has had a long and very distinguished experience in the field of organ donation.
DR. VEATCH: Thank you very much.
It's my assigned task to introduce and provide an overview of some of the ethical issues in organ transplantation. The subject of organ transplantation ethics divides very nicely into two major categories: the ethics of the allocation of organs and the ethics of procurement.
The allocation issues are relatively well settled today, and I will say very little about them, spending most of my time on the procurement topic. Legally and morally in the United States, when it comes to allocation, there is a formal commitment to simultaneously consider the moral duty of maximizing benefit from the organ system and allocating organs fairly.
The UNOS Ethics Committee, in fact, has adopted a position of requiring that these be given equal consideration.
There's one new controversy that's worth mentioning before we turn to the subject of procurement. Increasingly, the Web has begun to play a role in allocation issues. There are a number of Websites. I provide here in this slide the front page of one of these Websites called matchingdonors.com. It is a device where people needing organs are allowed to register and make their case for a donation of an organ.
You can see that there's a kind of commercial overlay, free air fares available for all matchingdonors.com patients and donors. In this Website, there is a listing of the various people who are seeking organs for procurement. For a rather substantial fee, people are allowed to make their case for a donation. This is an example of such a site. A picture is provided together with a rather attractive slogan, "I want my dad back."
You can see in the text — sorry — starting down here, "I am writing this on behalf of my very dear father. It has been over three years on dialysis for my dad now."
Further down in the text, "my children in the picture want their Papa back." Down in the next paragraph, "ironically I have worked as a transplant nurse for over ten years and have helped hundreds of people of all ages get their life saving kidney transplant."
The issue raised by this kind of a site is whether the private communication, a Wild West of the Web, makes organ procurement unseemly. I must say because my name is somehow associated with transplant, I was solicited by this Website wanting to know if I would like to advertise for patients for me to do transplants on patients on this site.
I indicated that since I'm not a surgeon I probably should not advertise for patients in the way they suggested. This, combined with the fees involved, raises questions about whether these Website are distorting the allocation process.
If you ask the question how does one obtain organs, through this Website, we're either getting altruistic, nondirected stranger donations that already would have occurred, and they're being diverted to the people who can make their best case, or what may turn out to be more likely, we're recruiting new donors who had not otherwise considered donating to strangers.
There are issues here of whether the fair allocation system is being circumvented. Notice that it was a transplant nurse who had the savvy, the knowledge of this site to make the pitch. It takes someone with knowledge of computers and Websites, as well as the funds to make this kind of appeal.
UNOS has said that it will not explicitly oppose this kind of recruitment. I think the question is whether the government ought to be concerned about the distortion of the allocation formula as a result of these devices.
The allocation formula is a very sophisticated, well worked out device that considers many complex factors, and this may end up short circuiting some of that allocation commitment.
Let me turn to organ procurement where, as I've said, I think most of the action will be with regard to the ethics of transplant. The story is rather well know. We have seen over the last ten or 15 years a nice, slow, steady increase in the number of donors that we have obtained annually.
We have, however, seen a dramatic rise in the listing of persons for organs, and it's clear that the situation is getting worse and worse. The result is a steady increase in waiting time so that now the mean waiting time is up around 1,100 days.
The implications of all of this is that in the last decade, 59,000 Americans have died waiting on the waiting list for an organ transplant. At the same time, there are approximately 60,000 cases where there has been a potentially medically suitable donor that has been lost through failure to obtain the consent and obtain the organs in a timely fashion.
So that even at the rate of one organ per donor, we would have been able to provide transplants for those 59,000. Not all of them obviously would have survived with a transplant, but we're talking about a substantial number of people who are dying for lack of a organ.
To make the story more complicated, many people have no principled objection to having their organs procured following their death, but they've simply never made the commitment. It's a hard subject to think about, and many people don't even write economic wills. This is not a high priority for many people.
So that we've got a situation where many lives are hanging in the balance, and yet there is no strong motivating force to get people to donate.
Furthermore, if someone dies and is a suitable donor, if that individual has not expressed a commitment to donation, there is a resistance among the family for making the commitment to donate the organ.
Realizing that the situation is getting progressively worse, there is increasing attention to what I think here in the Washington area it's appropriate to use the local jargon. So I will refer to it as the "nuclear option." The nuclear option would be to abandon the donation model that our country has been committed to since the 1980s and go to something that is sometimes boldly called "organ conscription." That's the language that Aaron Spital, a well known physician in the field of transplant is using.
It's really just the old organ salvaging scheme in the late 1960s and early '70s. We talked about routine salvaging of organs. That is a policy where organs would be routinely procured unless someone registered an objection.
Now, there's an empirical debate still about whether this would increase the organ supply. There's some reason to fear that routine salvaging would produce a backlash and some people would refuse to donate who otherwise might be willing to, but I think it's plausible based on experience in other countries that a conscription model would, in fact, increase the supply.
The moral issue is whether we as a nation are ready morally to abandon the individualism that has characterized this country. There are basically two ways you can think about the relationship of the individual and the state, and some nations have chosen to view the individual as a source of organs unless an objection is registered.
In general, the Catholic countries of Southern Europe, the socialist Scandinavian countries, and some Asian countries have gone to a model that legally authorizes procurement without an explicit consent, usually with an opt out provision for those to register their objection if they strongly object.
The alternative is the donation model, which is adopted in the Anglo-Saxon countries of Germany, the Netherlands, Great Britain, the United States, Canada, where we would require some explicit donation.
Now, we should recognize that in the U.S. we're not entirely committed to the priority of the individual. We have military conscription, and in an area closer to what we're talking about, we have laws that authorize medical examiner autopsy without the consent of the deceased or the family.
So with good reason, we have considered a kind of conscription model, but we're very hesitant to abandon the language of donation. I am struck by the fact that presumed consent is the euphemism that is often used for conscription. I'm open to moral discussion about conscription. I think countries that have adopted it are acting in good faith, and they're not absolutely outlandish policies.
I'm militantly opposed to taking conscription and applying the euphemism that there is a presumed consent. The fact of the matter is empirically we know about half the population would not consent if asked. That's true in countries around the world.
To claim you can presume consent when we have empirical evidence that a substantial number of people would not consent is at best a euphemism and at worse it's a conscious effort to try to hold onto the consent in donation model when, in fact, there is no consent and no basis for assuming consent.
In fact, no country in the world actually has a presumed consent law, and if you're going to talk about this in any further report, I would urge you to carefully distinguish between presuming consent and simply biting the bullet and saying we're going to have a conscription policy.
Let me raise for you six less drastic options before we contemplate the nuclear option. I raise these because I think they are issues of current discussion or might force us to begin thinking about some future alternatives that have not yet hit the agenda.
I'll say a word about required response, organ priority, market experiments, living donor exchanges, what I call the tainted organs problem, and finally, the most controversial, challenging the dead donor rule. Let me comment about each of these.
The first of the three that I list here potentially could double the number of organs. They are all models that would stimulate people to think about donation, and if they're willing to donate, to actually make the commitment.
Realistically we could go from roughly 50 percent authorization rates for procurement, I suspect, up to about 75 percent by simply developing mechanisms to encourage people who are in principle willing to donate to make the commitment and do so without an undue inducement.
The last three options on this list could produce substantially more organs, somewhere between roughly a 200 percent and a 400 percent increase, and may even approach the number of organs that we need to stabilize the waiting list or even reduce it. The question is how far can we work our way down this list without ethical offense.
Let me say a word first about required response or mandated choice. We now have laws that require requests of families for potential donors. A hospital is legally obliged to make the request for a donation.
We're also seen the beginning of the emergency of state level registries often related to Department of Motor Vehicles driver's license applications. What is being discussed and I think is worthy of consideration is going one step further and actually requiring a response to the donation question, not requiring that people donate, but simply saying this is a critical life saving decision and morally you are obliged to think about the problem to the point that you make a choice either in favor or against donation. A wise strategy would present a third option so someone could say they don't know what their decision is, in which case we would default to familial decisions.
The Department of Motor Vehicles' mechanism is, I think, a particularly bad way of developing these registries. There are 50 potential states so that it's all decentralized. I do almost all of my driving in the State of Virginia, but I'm not a legal resident of Virginia, and when I tried to register for the Virginia registry, I was told they didn't want my organs because I was not a legal resident of Virginia, even though when I have my accident I will almost certainly end up in a Virginia hospital.
Furthermore, the interaction with the Department of Motor Vehicles is mercifully infrequent. It's only every five or seven years. So it doesn't give you an opportunity to change your mind.
Most critically, from my experience, many of the employees of the Department of Motor Vehicle may not be properly motivated to initiate a conversation about the ethics of organ procurement. So I think that's a bad idea.
I would prefer some national registry so that everybody is in the same database. My personal preference would be to attach a donation question to the income tax return. It would reach every adult or almost every adult in the country. The IRS is pretty good at rules of confidentiality. They could download the responses, ship them to UNOS, and we'd have a national database that's renewed every year. So that would be my personal preference, but some national database seems critical.
I think the Council ought to endorse a national registry.
Let me move on to item number two, organ priority. There are various strategies for rewarding those who have donated by giving bonus points should those who have donated at some point need an organ themselves.
We already have bonus points for those who are living donors of kidneys. So the legal issue have been settled. This is not an undue inducement. It's not valuable consideration that is prohibited by law. I would like to see us explore ways of giving a small token, a bonus point or two for anyone who has signed a donor cards and had that donor card for, say, two years. That would avoid people signing the card just at the point they find out they need an organ for transplant.
I would also like to explore, although it raises some complex technical issues, whether we could give bonus points to family members who donate their loved one's organs after the loved one is deceased. I think the Council ought to endorse in principle the notion of bonus points and explore ways that the model can be expanded.
The third possibility is to begin experiments in market mechanisms. We've got this terrible problem of a lot of people who in principle are willing to donate, but they just have never made the donation decision. They haven't taken the time to think about it.
There are market mechanisms that have been on the table for many years. They have never been taken terribly seriously until recently. As those two curves between donation and listing get further and further apart, there are more serious proposals.
Now, there have always been those on the libertarian side who have thought markets are perfectly legitimate. They're a reasonable way of increasing the supply of organs. The resistance has always come from those who I would describe as being on the left who are concerned that any market, any payment for any step in the process, whether it's donation or actually providing the organ, will discriminate against the poor.
The concern for the poor is that offering financial incentives would be coercive. I'm pretty sure that coercion is not the right term. Coercion is, if you talk to philosophers, a term for forcible removal of options.
What we have here is the complex problem of the ethics of irresistible offers. Offering large financial incentives to provide organs might turn out to be irresistible in some cases, particularly for the poor.
Now, the ethical problem for the Council to deliberate on is whether an irresistible offer is always immoral. It's pretty clear to me that it's not always immoral. I consider the invitation to be with you this morning an irresistible offer. It seemed like a wonderful opportunity, and quite frankly, I couldn't turn it down, and yet I don't consider any of you immoral for having made the offer to me.
The real problem with irresistible offers is exploitation. Exploitation involves a rather complicated set of issues, and the Council may want to spend some time deliberating on exactly what constitutes unethical exploitation.
The exploiter needs to be able to offer some other options in order to exploit the one to whom an offer is made, but if a kidney or a heart surgeon offers a heart transplant to a patient telling the patient the alternative is death, that would strike me as for many people an irresistible offer, and yet a morally legitimate offer precisely because the surgeon has no alternative to offer to that individual.
The problem with financial incentives, if they come from the government, is that the government does have an alternative. It could have adopted an decent minimum wage or compensation so that no one is so deprived of the basic necessities that they find such an offer irresistible.
In 1983, I testified in Congress saying I opposed markets at the time because of the irresistible offer problem. I said if in 20 years or so we have not developed ways of responding to the basic needs of the poorest of our citizens we should revisit this question.
True to my word, I did revisit it 20 years later, and I've come reluctantly to the conclusion that it's time that we begin experimenting with very limited market mechanisms to encourage people to get over the resistance of thinking about this question.
Now, I've covered the three topics that I think are relatively noncontroversial and worthy of the Council's attention. Let me turn to three more in the time that remains that I think are more complex questions and maybe questions you have not thought about.
There are many people needing a kidney who have a willing living donor. Some of those willing living donors turn out to be incompatible with their planned recipient. So they are unable to make a living donation, and the recipient has to go on the waiting list and wait five years for an organ.
Some of these incompatibilities are A-B-O blood incompatibilities. Some of them are positive antigen cross-matches. There may be other reasons such as size.
If there is a blood group O potential family donor with a blood group O recipient, the blood group is not a problem. There may still be a positive cross-match. We could conclude that that's an incompatibility and this recipient has to go on the cadaver waiting list.
But as an alternative, we could have this O donor donate to the cadaver donor pool and in the process move the recipient up to get the next negative cross-match blood group O deceased donor.
This turns out to be ethically relatively noncontroversial. It is a policy we've adopted here in the Washington area and in a number of other jurisdictions. So the idea of living donor-cadaver exchanges is something that is very much on the agenda today.
Let's move to the next problem, however. There may be a family member willing to donate who is an A or a B or an AB blood type and their recipient is an O. That is an incompatible donation, and we could, following the model I just described, have this AB or A or B donor donate to the cadaver pool and in exchange for that, the next O blood group patient who donates to the cadaver pool — sorry — would then have that organ go to this original recipient who is O.
This presents an interesting ethical problem. This kind of an exchange has the effect of taking this person off the cadaver list and producing one more living donor transplant. So the effect is an overall shortening of the waiting list. That's a very nice thing.
The problem is every organ that comes into the list is non-O, and every organ that comes out of the list is an O organ. O candidates are among those who have the longest waiting times as we stand today. So it presents a classical Rawlsian fairness problem. Utilitarians would generally accept the harm to the Os on the list — they have to wait longer — in order to get the overall benefit of an overall shortening of the list.
Justice advocates, however, have adopted the view that this particular kind of an exchange is ethically unfair even though it is utility maximizing because it discriminates against Os on the waiting list who are unable to bring a familial donor and make such an exchange.
Now, having confronted this, there has been discussion in the literature in the last year or so about ways to get around this injustice. One possibility would be to get the consent of the Os on the waiting list to wait a little longer for the good of the overall community.
Lainie Ross, a physician at the University of Chicago, and I have both pursued this question, and she actually was part of a group that did an empirical study that founded 59 percent of the people on the waiting list would have been willing to wait a bit longer, but 59 percent is really not sufficient to justify the injustice to those who are already waiting the longest and would have to wait even longer.
The justification, if there is one, requires going back to our national commitment to balance utility and justice and explicitly make a commitment that we will have a slightly unjust allocation system in order to increase the number of donations.
I, as a way of proposing a temporary compromise, have urged the Washington Regional Transplant Consortium to cap the extra wait time for the Os on the list at 30 days predicted extra wait time.
But another alternative is to reduce the wait time for the O blood group by following a couple of strategies. One of them is to further some experiments in incompatible direct living donor exchange. There are groups, including at Johns Hopkins and in Japan, that are ignoring this block and are doing this exchange with some technological ways of attempting to protect the recipient from the blood incompatibility.
I doubt that that's going to develop until we develop more technology to overcome that incompatibility. The strategy that I think is interesting is something I call a voluntary paired donation. It was the subject of my editorial in the January American Journal of Transplant. We have many cases, by my calculation 1,300 cases a year in the United States, of an O donor family member who's willing to donate with a non-O recipient.
Now, this is a straightforward compatible donation, and they take place every day in the United States. We never hear about them because this is blood compatible and presents no problem.
However, looking at it from a systems point of view, you could describe this as the squandering of the O organ. We're putting an O organ, a valuable resource, into someone who doesn't need an O organ. We could find another pair, the pair I talked about earlier, of a non-O donor with an O recipient and pair these two people up.
This second group, the second pair, is not compatible, but what we could do is get this O donor to voluntarily give his organ to this O recipient in exchange for which the non-O family donor would give to this organ and that produces one extra living donation per paired exchange. If there is a potential of 1,300 of these in the United States, that's 1,300 people a year of O blood type who could be removed from the cadaveric wait list. The result would be two compatible transplants rather than one.
Now, people like Frank Delmonico will claim who as an O blood type donor would go through this when they could just give the organ to their spouse or their loved one. My suggestion is that there are advantages all around, and that rational people when they think about it will see the wisdom of this not only in terms of contributing to the community. That's obvious.
It's also obvious that this person gains because he gets a living organ rather than a cadaveric organ.
What may not be obvious is that this individual here can also gain. He can gain by getting a younger donor, a donor with better kidney function or a better HLA match. So it's not just an appeal to the altruism of this pair. It may be in most of the cases of the 1,300 possible that we could arrange this scheme so that it is simultaneously in the interest of both of these recipients to be involved.
I think the Council should endorse UNOS development of this voluntary living donor matching program.
Let me move on to still another, the fifth of the schemes I wanted to mention to you, the scheme that falls under the general category of medically suitable expanded criteria. Some have suggested that there are many organs out there that are classified as medically unsuitable that, in fact, could be procured. Approximately three-fourths of all referrals to OPOs for potential donors are classified as medically unsuitable for one of two reasons. The donor is believed to have some infectious disease, some disease that might be transmitted or — and this is kind of embarrassing — it turns out the donor is not yet dead.
We get referrals for organ donation, and when our team goes in and looks at the donor, it turns out the donor isn't brain dead, may be very close to being brain dead, but not brain dead. So in order to avoid embarrassing the physician who referred that patient, we use the euphemism of saying that donor is medically unsuitable. The reason he's medically unsuitable is not that he's unhealthy. It's that he's not dead yet, and we have a policy called the dead donor rule that we don't take organs from donors who are not deceased.
For example, we get referrals of patients who have high risk lifestyles, IV drug users or gay lifestyle persons, and historically we rejected those donors right off the top on the grounds that even if they test negative for HIV, they may not have seroconverted and there is a risk of transmission.
Now, the risk is very small, but it's real. We have begun asking the question of those on the waiting list: if such a potential donor became available, would you be willing to take that risk and get an organ now rather than waiting until your turn comes up for an organ without this risk?
Now, some people on the waiting list are near death. So, in effect, the choice being presented is would you rather die or receive an organ that tests negative, but poses some HIV risk?
Surgeons don't like to think these thoughts because it runs some risk of putting HIV into a patient without HIV, but we are now coding the waiting list so that people who are willing to consider such organs would have an opportunity to do so.
To stretch your thinking, consider that we get an organ that tests positive from a deceased potential donor. We by policy have HIV positive persons on the wait list for transplant. Could we even take the next step of offering a known HIV positive organ to an HIV positive recipient, explaining that there's a risk of transmitting maybe a different strain of the virus and so forth, but could we make that offer recognizing people would have the right to decline if they didn't want it.
And if you followed that step in this progression, think of the case of an HIV negative person on the wait list in liver failure, Status I, has a week to live, isn't getting an organ. Do we dare ask the question of whether that person would be willing to take the HIV positive organ, perfused as well as possible, but clearly not being able to establish that it's HIV free, and put that intentionally into a near death HIV negative recipient?
I think the Council should endorse coding of the wait list so that we have an indication of which of these tainted organs persons are willing to accept.
It turns out to be a problem not just for kidney or not just for livers and hearts, but for kidneys as well. We're increasingly realizing that kidney transplant is a lifesaving intervention. The deaths per thousand for patients on the wait list you can see is about 50 percent higher than for persons getting a transplant. So even for kidney this is a potentially lifesaving intervention.
I have one last suggestion. If this isn't controversial enough to stimulate discussion among the Council, let me move to my sixth and final suggestion.
Many people, thousands of people each year, are medically unsuitable because the potential donor is not dead. Now, some of these people are candidates for a planned cardiac arrest. That is a decision to withdraw life support because the individual, even though he's not dead, may be permanently comatose, and the person could become a donor after cardiac death. That's being done here in Washington. Ten percent of our donors are donations after planned cardiac death.
The more controversial and interesting problem is whether we as a nation should consider donation without brain death or cardiac death, that is, people who are legally today alive. To use another language, can we make exceptions to the dead donor rule?
In particular, there is beginning to be active discussion about procuring organs from those who are permanently comatose or permanently vegetative, but not legally dead by whole brain criteria.
Now, it turns out that there are two different strategies one might use. One might keep the existing definition of death and legislate exceptions to the dead donor rule, saying that you can't procure an organ from somebody unless they're dead, unless they are permanently comatose or permanently vegetative, and of course have consented to the procurement in advance.
Only explicit donors would have their organs procured under this scheme. That's one possibility. The other possibility is to further amend the definition of death to move to what's called a higher brain definition that would call people dead in our nation who have not literally lost every function of the entire brain.
As far as I know, no commentators have today that are commenting on death today really literally believe in a whole brain definition of death. It means every last function, every reflex through the brain stem has to be gone before death is pronounced.
If you read the literature, even the defenders of the present law acknowledge that there have to be exceptions for what one person has called an insignificant nest of cells.
So we could shift to a new definition of death that would classify some of these permanently comatose persons as dead. In fact, a large group of scholars now in rejecting a whole brain definition has either said go back to a cardiac definition and then write in some exceptions to the dead donor rule or, alternatively, go to a higher brain definition where some of these patients would be legally classified as dead.
The literature among the specialists in the field suggests that this is a plausible option, but would the people, the ordinary citizen, accept it? Laura Siminoff, Stewart Youngner, and their group at Case Western Reserve has recently conducted a study looking at the opinions of ordinary citizens in the State of Ohio. The results are really quite provocative.
They studied 1,351 citizens, ordinary people through polling mechanisms. These are top flight, sophisticated, empirical scientists. They presented three scenarios, pretesting to make sure that the ordinary citizen understood the scenario, one involving whole brain dead persons, people legally dead today in Ohio and every other state in the Union; a second scenario involving a permanently comatose patient who is not legally brain dead; and a third scenario involving a permanent vegetative state patient like Karen Quinlan or Terri Schiavo, who obviously is not legally dead today.
In their study they asked: would you consider each of these three patients dead? For the whole brain case, 1,164 said they're dead. That's 86 percent. That more or less squares with our knowledge that 10 or 15 percent of the population now have not bought brain-oriented death pronouncement.
However, what they also found was 57 percent considered the person in permanent coma to be dead, and 34 percent considered the vegetative state person dead. Well, so far that more or less reflects public opinion about brain death, with almost everybody accepting whole brain and lesser percentages accepting these other options.
They then asked the question: would you procure organs from these three cases? And as you can see, almost everybody who thinks the person is dead ends up favoring organ procurement. There are a handful of people here who think the patient is dead but wouldn't favor procurement for whatever religious or philosophical reasons, and this holds true right across. They're almost identical responses.
Now, here is where it gets interesting. They then went to those who said these patients were alive and asked even though they're alive, would you procure organs, and you see that there is another group of people, ordinary citizens who don't have the sophisticated linguistic analysis to sort this out. They say these people are alive, but it's okay to procure their organs.
Now, if you were to add those two groups together, you get in the case of brain death 93 percent who say it's okay to procure organs. In the case of permanent coma, you get one way or another 74 percent who would procure organs, and even in the case of permanent vegetative state, you get 55 percent who would procure organs.
I suggest that it's time to consider the enormous lifesaving potential of opening the question about going to a higher brain definition of death or, alternatively, making exceptions to the dead donor rule.
The majority of ordinary citizens seem already to be in favor at least in the Midwestern State of Ohio.
Let me quickly summarize and I'll be done. Six schemes that I mentioned, each of which leads me to make a recommendation to you folks. I think the Council should endorse a national registry. I think the Council should endorse bonus points for those who have donated; should endorse limited market experiments to sort out whether, in fact, this would get people over the resistance to being willing to donate.
And finally, continuing the summary, I believe the Council should endorse UNOS development of a living donor matching program, such as the one I described, particularly the one with the high payoff, the voluntary exchange from familial O donors.
I think the Council should endorse coding of the wait list for willingness to accept organs posing some level of disease risk, and you can talk about how far down that line you want to go with donors that have either malignancies or viral infectious diseases.
And finally, the Council should initiate a study of organ procurement from those who would be dead by higher brain definition of death, but are not dead under the current legal definition.
With that, let me stop and I look forward to any questions or discussion that might result.
Thank you very much.
CHAIRMAN PELLEGRINO: Thank you very much, Dr. Veatch, for a very direct, clear, highly provocative presentation of the possibilities and the ethical issues that go with it. The full range, I suspect, has been presented before us with specific recommendations.
I now open up the subject for discussion by the members of the Council.
DR. FOSTER: Mr. Chairman, I'll ask the first question.
Dr. Veatch, in reading your paper — and maybe this is for the next session, and maybe it's covered in one of the six things — but I had anticipated that you would also address the issue that you've thought about of direct cash payments for the donation of organs. Now, if you think that's going to come up in the next session I'll hold the question, but if it's to the next session, then I would hope you would also add your comments at that point.
DR. VEATCH: Yes, my understanding is it will come up in the next session.
I've tried to adopt a very cautious, middle of the road approach. Historically I resisted all market mechanisms because of the risk of injustice. I think we've waited long enough. There are too many people dying. I think it's time to begin limited experiments with cash payments.
These would be cash payments either for donation after death, where payment would go to the estate of $1,000 or so, an enormous money saving proposition. So the money is not an issue. The issue is the ethics of that.
I think we're ready for a limited experiment, perhaps in a single state like Pennsylvania that has shown an inclination.
I'm willing to discuss cash payments in the matchingdonor.com kind of model for living donation of kidneys. Iran has adopted that policy and completely removed their waiting list for kidneys.
Now, our nation may not consider Iran as the model that we want to follow, but it's interesting to see what the result was at least in that culture and in some of the other cultures that have gone to cash payment.
I'm nervous about it. I think the way to go is very limited experiments before we decide whether it really has discriminatory effects.
DR. FOSTER: Well, I'll probably wait until the next thing, but I myself am rather skeptical that either any of these six things alone or combined can really do anything about the curves that are going on. I mean, if you really want to be serious about having people waiting for five years for a kidney, which is what it is in Dallas, and so forth, if you really want to do something about it, and if you consider premature death, which is not going to happen with people who have money and so forth, but for the poor it is right now.
I work in a hospital that takes care of the poor. We cannot get a liver transplant or a kidney transplant for many of our people who are new immigrants and so forth and so on. That to me is a radical problem about fairness and justice and so forth.
I'm not very interested in some of the concerns of justice that others have brought out in a minor way. I'm worried about people who every day have no hope of getting a kidney. It seems to me that one ought to be more radical in terms of the solution.
There's a lot of money made in this business. In Baylor Hospital, which is the biggest private hospital in Dallas, the most lucrative thing in the hospital is transplantation. I mean, these are huge amounts of money, and we're arguing about you use $1,000. I would say, you know, why not — I'm just talking about dead, you know — just enhancing the likelihood that a family to get the burial cost, let's say. Maybe it costs $10,000 to bury somebody. I don't know. It's so tiny that that would likely do something about it.
Now, I will save the rest of it, but as a person who works every day facing this problem, I'm not a transplant surgeon, you know. I mean, it just kills me to have people just die right in front of me that we could save because we can't get an organ. And I don't think that even 1,300 changing Os and so forth is going to do anything about it. I think we have to do something radical about it.
But I'll wait will the next issue to comment on that.
DR. VEATCH: My suggestion was that the combination of these six schemes has the potential of substantially changing that waiting list, but one of the six items is experiments with markets.
One last point. I'm uncomfortable trying to dress up cash payments by giving them a rationale like paying burial costs. If you follow through the logic if you pay the burial cost, the estate that normally pays the burial cost is that much larger, and it really amounts to a cash payment to the beneficiary of the estate.
I would prefer to call it that straight out rather than — there is a wonderful euphemism in the literature called rewarded gifting. We will not pay you for your organ, but if you give us an organ, we will reward you with cash.
I think that comes powerfully close to a market mechanism, and I would prefer to just say we're paying people for their organs.
DR. FOSTER: Let me just clarify my thoughts are not — I read your paper about that. I'm not interested in hiding this for anything. I'm saying you have to pay UNOS for these things. You know, they cost; you know, different places of the country you pay for these organs. I simply say we're paying like everything else we do in the country for something at what it's worth and just call it that. I'm not going to try to put it into a euphemism. I didn't imply that at all.
I'm just straight up saying this is a matter of solving a problem with money, and it will save money in the long run, apart from the humanitarian thing. So I didn't want to get confused about trying to — I'm not an ethicist. So I'm not trying to hide my thoughts there.
CHAIRMAN PELLEGRINO: I have Dr. Meilaender and then Dr. Eberstadt.
DR. MEILAENDER: I want to try to ask a couple of questions that sort of move behind where you began, if I could because I almost feel as if I were entering the discussion too far along for me at least to think it through. Because there just seem to be some issues that need sorting out that are kind of presupposed here.
For instance, a couple of times along the way you used language about encouraging people to overcome resistance to organ donation, but I need to know something more about the nature of the resistance in order to know whether I want to encourage them to overcome it or whether encouraging them to overcome it would be corrupting them in some way.
I mean if it's just selfishment, that's one kind of resistance, but there may be other harder to articulate sorts of resistance, and so I'd like just to hear you reflect just a little bit on that.
A second thing. You started with the nuclear option, as you called it, of conscription and then moved to some less drastic possibilities, but how exactly did you rank those lexically because several of the less drastic possibilities seemed more nuclear than conscription to me. Challenging the dead donor rule, for instance.
So I mean, I just don't understand quite how that went.
And then third, and maybe most hard to reflect on and yet important, way back there somewhere underlying where you started are just questions about sort of what is an organ and what is a body and how are they related to each other, and is there some reason why organs shouldn't be for sale, for instance? I mean, not everything is for sale. How do I know?
I think public offices should not be for sale, and if we try to explain that, we have to think about what it is and so froth. How do I know whether an organ is the sort of thing that should be for sale unless I think about kind of what it is in relation to a body?
Those are three examples of questions that seem to me sort of that come before where you started us, and I'd like to hear you just — and I know we don't have a lot of time — but just say a little bit about them if you would.
DR. VEATCH: Yes. In some ways my response to your third point is tied up with my response to your first, your questions about my reference to encouraging overcoming of resistance.
Let me make a distinction between resistance to thinking about the question of donation and resistance to donating. I have enormous respect for someone who has thought through these issues and has decided that it's not appropriate to donate. I'm more uncomfortable with the psychology of someone who says, "Well, this is an unpleasant thought about my distant future or my death, and it's just not something I want to think about right now."
I am committed to the view that each of us owes to our fellow members of the moral community at least enough to think about this question. So when I talk about encouraging overcoming of resistance, my main focus in on about the 25 percent or so of potential medically suitable organs from people who in principle don't object to having their organs procured, but have never gone on record.
Lots of those organs are lost today because people have not thought about the question. I believe that we're at a point where using small incentives like bonus points or even small payments to think about that question is not only morally legitimate, but morally imperative today, as long as we're going to stay in the donation model.
If we go to the conscription model, then the problem goes away. I'm sufficiently committed to the donation model, the priority of the decision of the individual, that I don't want to take organs unless there is a gift of the organ.
But at the same time I think there is a moral obligation on members of the moral community to have thought about this problem and come to some conclusion. The incentives that I have suggested are designed at least in part not to buy the organs but to stimulate people to think about whether they're willing to make the donation.
I suggested that conscription was the nuclear option in large part because I think it requires the most fundamental decision about the nature of the relation of the individual to the society, and going to conscription or routine salvaging or what's euphemistically called presumed consent requires a reversal of our traditional affirmation of the priority of the individual.
All of the six items I mention are less drastic in that sense, and some that sound most drastic, like procuring of tainted organs and changing the definition of death, I think are defensible on their own regardless of the implications for organ procurement.
I think people should have a right to choose to be alive with a tainted organ rather than dead without one. I think people should be allowed to choose a certain range of definitions of death based on their religious and philosophical belief systems. I've held that for 30 years, well before anybody ever thought about this definition of death issue in the context of organ procurement.
CHAIRMAN PELLEGRINO: I have four members of the Council who wish to comment, and it constrains me to make the comment also that the time is limited. So if you can make it as concrete as possible it will be helpful.
I have Dr. Eberstadt and then Dr. Hurlbut, then Dr. Gomez-Lobo, and then Dr. McHugh.
DR. EBERSTADT: Professor Veatch, what I think will be a quick question about your own thinking on financial incentives and organ procurement, I read your very interesting paper, and if I understand it correctly, your own thinking has been moved towards reconsideration due in part or largely by your judgment about the condition of the poor in the United States and what you see as our government's failure to deal with poverty in the U.S.
As it happens I'm doing a monograph right now on the poverty rate in the U.S., which I believe is an absolutely dreadful mismeasure of material poverty, and I try to make the case in this monograph that since 1983, when you testified before Congress, the material condition of the U.S. poor has actually dramatically increased in many different ways.
My monograph may or may not be convincing to any reader, but if we hypothesize that you were convinced by this set of arguments I made, would that be enough to make you reconsider your reconsideration of financial incentives?
DR. VEATCH: I've said all along that financial incentives per se are not the problem. The problem is developing financial incentives in a social context where some would be exploited because of their desperate poverty.
So if you tell me that you hypothesize this society where that dreadful level of poverty does not exist, where the exploitation would not occur because of that, then I'm much more open to financial payments than I otherwise would be.
I focus on this analysis. I assume libertarians have always been satisfied with market mechanisms. The political problem with markets has been the resistance from the egalitarian left, and I've said I was part of that egalitarian left leaning portion of the population, but we've waited long enough with the number of lives that are at stake, and we ought to cautiously begin experimenting.
CHAIRMAN PELLEGRINO: Dr. Hurlbut.
DR. HURLBUT: Well, picking up on that theme from a different angle, reading your paper and especially in the phrase where you speak of the poor being allowed to market the one valuable commodity they possess, it struck me as raising some fundamental questions that maybe we get on the table first.
First of all, it did strike me that I teach in a university and many of my students feel very poor. So it raises an interesting question of who should be allowed to donate a kidney in the first place.
You mentioned that driver's license is the moment, and they do that in California, too, where you can indicate a willingness to donate. They give licenses at 16. Is that too young for somebody to decide?
Let me give you a series of questions, and you can answer them all at once. Is that too young to decide?
I noticed in the picture that you gave us in the beginning Jackie Stupani and Mary Christiansen. If I understood it right, the younger woman donated to the older woman; is that right, in this picture?
DR. VEATCH: I'm not sure which.
DR. HURLBUT: The online thing where the 64 year old grandmother —
DR. VEATCH: I'm not sure what the answer is to your question.
DR. HURLBUT: Okay. Well, here's the series of little questions. What's the average age of death awaiting donation?
What's the average age of a donor?
And what's the estimated increase in life span after a donation?
And do you have a feeling for whether or not there's an age where somebody shouldn't donate? In other words, there are risks associated with donation. Let's not ignore that fact, and there are idealisms involved that may be disproporationate, too. There are very positive idealisms obviously also, but the question is: is there something in the way of even just getting down to the equation here without the deep, deep questions that Gil was raising? Is there something a little sort of troubling about the idea of young people donating for old people, for example?
That's the kind of category of question I want to address.
DR. VEATCH: I think we need to make a distinction between donation after death and living donation. For living donation, surely the consent has to be limited to competent adults, and there needs to be psychological work-up of the donor to make sure they're competent. A 16 year old would not normally qualify for living donation.
For donation after death, the driver's license checkoff, I am not uncomfortable with someone as young as 16 making that choice. We could adopt a policy that you can't become an organ donor until you're 18 or 21. By definition, the risks to the donor are not medical and direct. If there's a risk to the donor at all, it is psychological and spiritual.
I'm quite comfortable with a 16 year old becoming a donor on a driver's license. That doesn't trouble me.
With regard to living donation, I am very hesitant to impose limits on bonded donors. By bonded donors, I mean someone with a preexisting relationship with the recipient like a spouse. It makes me very uncomfortable to envision, say, a spouse who knows that he or she has the lifesaving potential for dealing with a medical problem of a loved one and to have some review committee in the transplant world review the case and decide the donation is not acceptable because it's too risky. I find that very troublesome.
I'm a member of the Living Donor Task Force and strongly oppose such limits.
DR. HURLBUT: Do you have the statistics for the questions that I asked about the average age and so forth?
DR. VEATCH: Those numbers are available. I don't have them off the top of my head.
I don't see difficulty with donors of too old an age once they qualify to be recipients of a transplant, certainly not in terms of cadaveric donation, but even in terms of living donation. Frankly, it doesn't trouble me. I would be interested in hearing arguments to the contrary.
CHAIRMAN PELLEGRINO: I have Dr. Gómez-Lobo, and let me give the list please because the time is, again, going and I need to warn you about that. Dr. McHugh, Dr. Kass, and then Dr. Lawler. So that everyone may have a chance to comment, brevity would be most helpful as well as virtuous.
DR.GÓMEZ-LOBO: I'll try to follow the path of virtue myself.
Let me go to the point that mostly worries me as a member of a Bioethics Council, as someone who is expected to give advice on ethics, and I think the most troubling part for me is the role of the empirical study in ethical thinking.
I have in front of me, of course, the results of the empirical study of the Ohio citizens. Now, what is the value of that for the Bioethics Council? The fact that people are willing to procure organs from people who they think are alive. Now, one way of viewing that would be to say, now, there's a very serious corruption here in ethical thinking, if that's what they think.
Now, what's the solution for that? I really admire your willingness to go the frankness road and not call, say, rewarded gifting or compensated gifting "gifting." I totally agree that one should call that purchasing and selling of organs.
But here we seem to face the idea of changing the definition of death. I would call it the criteria of death just to accommodate this possibility. Now, I find that, frankly, unacceptable. I think that the criteria for death should be independent of that and that there should be a moral decision affirming that we should never ever procure organs from people who are alive.
DR. VEATCH: I would agree that it is never acceptable to change a definition of death just to get organs. Leon will remember, I'm sure, Hans Jonas suggesting if that's our strategy, why not define all college students as dead. We'd get much better organs and solve some other problems along the way.
DR. VEATCH: We can't change the definition of death for that purpose. I tried to make clear that my starting point was that the present definition of death is incoherent as it stands, and there must be a philosophical correction, one that has been accepted for at least 30 or 40 years by a large number of theorists, including one of the leading moral theologians of the Vatican that endorsed a higher brain definition.
Once we have decided that there is a more philosophically defensible definition of death, the question then becomes, well, why don't we adopt it and save some lives as a fringe benefit.
Typically the answer is, well, it's a political problem. It won't sell to the ordinary person. The sole reason I presented the Ohio data was to attempt to speak to the objection that even though higher brain definition of death is philosophically defensible, the ordinary citizen won't accept it.
The result seems to be that many ordinary citizens don't exactly grasp the difference between what it means to be dead and what it means to be alive. I, frankly, think I could take the people who indicated in the survey that they were willing to procure organs from the living and convince them that, in fact, the reason they believe they could procure the organs was they believe the person was already dead in the sense of having lost standing as a full member of the moral community.
So I use the survey merely to offset the claim that the philosophically defensible proposal is not politically feasible.
CHAIRMAN PELLEGRINO: Dr. McHugh.
DR. McHUGH: Thank you, Dr. Veatch, for your presentation.
But I also have the same sense that Gil Meilaender has, that there are a very large number of themes underlying this that relate to issues of resistance and religious matters of meaning in this process because we don't sell certain kinds of things to one another and don't make exchanges at that level.
But I have fundamentally a more simple question to ask of you and of all the people like myself who are involved in hospital care where we see that the clamor for organs is far exceeding its supply. And most of these solutions that are proposed, even the solutions you propose, I don't think are going to solve that problem.
Dan and I have been looking at the kidney business since 1955-56, when the first transplants were made, and have seen the wonderful achievements and progress in science in relationship to this thing that has happened over 50 years. It began with us with identical twins and now has come to the place where we're at.
Now, I'm not sure that I want right now — of course, for individuals I want them, the individuals I know and I appreciate my patients and the like, I would like them to get organs when they can, but at the same time, these statistics of showing this demand, it just says that the science has got to get better, and the science of xenotransplant, you know, the trajectory from the beginning at the Brigham with those twins to now, well, where are we with xenotransplantation? And shouldn't this pressure be the kind of pressure that we want to be presented, to acknowledge, and say more investment needs to come into xenotransplant because that's going to be the solution?
DR. VEATCH: Let me simply say I'm supportive of experiments in xenotransplant and immunosuppression as well.
CHAIRMAN PELLEGRINO: Dr. Kass.
DR. KASS: Since time is short I'll simply just register that I don't think the current criteria of brain death or whole brain death are incoherent. I think they can be defended; that there are people writing in the literature. It is too bad. Perhaps this Council could take up that subject and defend the understanding of death as the death of the organism as a whole, but you know I think that we differ. I have just been silent on the subject.
I'm more interested in — and this will perhaps be taken up more in the next session — your thoughts on the buying and selling and the market. You say in the paper that there really is — this i on page 14 — "There has never been any serious moral problem with permitting financial incentives to nudge middle and upper class people to think about their willingness to consent to organ procurement."
In other words, the issue for you has to do solely with the pressure that this places on the poor. Is it really true that if there were no poor we would have no concerns about becoming a society in which organs are bought and sold?
If that's your concern, why don't you simply say, look, only those people who pay income tax above a certain sort can enter into the business of buying and selling.
And, on the other hand, if you are now willing to experiment with markets involving the poor, why aren't you in favor of letting them get out there in the market and buy and sell to the highest bidder so that they actually make something from this?
In other words, isn't there really something disquieting about entering into a society in which parts of the body are treated as alienable things, like automobiles and other disposable goods. If that's not a question for you, I don't see why you don't find some solution compatible with your worries about the poor, either to let them get full advantage of their organs or just keep them out of the market so that they won't be exploited.
DR. VEATCH: Let me simply say that, indeed, I've been troubled by just those questions for a very long time. I believe what I've endorsed is incentives for thinking about donation. I'm more comfortable with incentives for thinking about donation than I am about incentives to actually providing the organs, but over the years I've been moved by the very serious problem of the number of people whose life and death hangs in the balance.
CHAIRMAN PELLEGRINO: Dr. Lawler.
DR. LAWLER: I think after listening to Dan I'm all in favor of more aggressive methods to acquire the organs of people who are dead in the noncontroversial sense of dead, but going further than that seems to me to be a huge problem.
The question Bill asks, I think you answered it too easily. A husband giving an organ to a wife, this is an act of love. A daughter giving a kidney to a father creeps me out beyond belief for reasons Bill was trying to call to your attention, I think.
And then the Website creeped me out beyond belief for this reason. If you have a market, then you have to have advertising, and advertising means scaring up kidneys by having commercials like, "What are you doing at home sitting selfishly around with two kidneys? You don't really need them."
DR. LAWLER: You know, "what kind of person are you?" It's not so much the monetary thing that does bother — it does bother me. I'm not for it, but that in idealistic young people, 18, 19, we don't have the draft anymore and they're not going to conscript my organs, but I could volunteer my organs.
This seems to me to be quite unreasonable demand to put on people, right? And so when you create a market, you then have to stimulate demand and it requires a certain kind of advertising. In a way, although I would be very concerned about exploiting the necessity that governs the poor, I might even be more concerned about exploiting the idealism which governs the rich and pampered.
DR. VEATCH: I think those are all valid concerns. Let me simply note that in terms of volunteering organs, that's presently legal today and is being done. So all the questions about the validity of the donation from a young person are already on the agenda and OPOs and procurement personnel have to screen nondirected donors to eliminate those who for one reason or another are not making an adequately competent donation.
Adding money to that mix doesn't change that issue, although it raises the deeper kinds of concerns that Dr. Kass was trying to raise.
CHAIRMAN PELLEGRINO: Thank you very much.
We have reached the end of this first session. Let me point out that we have two more speakers on the same subject coming on at 10:45, and therefore beseech the Council to be back promptly on time because I intend to start promptly on time because I know you'll want to have questions for the other speakers as well.
(Whereupon, the foregoing matter went off the record at 10:32 a.m. and went back on the record at 10:47 a.m.)