Thursday, September 7, 2006
Session 2: Living Organ Donation: Outcomes and Ethics
Discussion of Staff Working Paper by Ginger Gruters, M.A.
CHAIRMAN PELLEGRINO: Thank you for reassembling so promptly, keeping us on schedule.
Before we take up the next item, I want to remind you, Council members, that you have two statements from the transplant community as background to refer to, one having a consensus statement on the Amsterdam forum on the care of the live kidney donor and then an ethics statement of the Vancouver forum on the liver, lung, liver, pancreas and intestine donor. They're brief and they're to the point and I think they'd be very relevant to your discussions and contemplations of the issue.
Our next item is the discussion of the question of living organ donation, the outcomes and the ethics, referring to some of the data that now exists on the practice of living donors.
In this case, as in previous ones, a staff summarization of where we are has been presented and distributed to the Council members in advance for their consideration and our procedure will be as before, I will ask Council Member Dr. Robert George to open up the discussion and then we will open up the rest of the discussion to the Council members.
Robby?
PROF. GEORGE: Thank you very much, Ed, and let me begin with a special word of thanks to you and to Dan Davis for accommodating my need to have the schedule shifted around this morning in anticipation of being held against my will for 45 minutes or an hour in some place like New Carrollton which, in fact, happened. I asked Ed and Dan if it would be possible to switch the first two sessions and they were very generous and accommodating that, so thank you.
Thanks, too, to Ginger for a wonderfully clear paper where in brief compass she not only gave us the facts, but laid the ethical issues out for us.
Well, let me begin by introducing something very familiar to all Americans, something called the general libertarian position. And that is the position that as long as there is no coercion or deception, a potential donor should be able to donate any organ to anyone and even make nondirected donations as he chooses. This would include choices to donate organs such as the heart, where the donation would result in the donor's death. It would also include the right to sell one's organs.
A small, but not insignificant number of Americans hold or are inclined toward the general libertarian position and even people who reject it see its attractiveness and often have difficulty explaining why they reject it, at least judging from my discussions with students in class, they have difficulty seeing or explaining why they reject it.
Some accept the premise or at least purport to accept it that people "have a right to control their own bodies." Or "have a right to do as they please with their bodies so long as they do not harm others." But they nevertheless worry that accepting the libertarian principle, as the ground of public policy in this area and others, for example, think of the question of regulation of hallucinogenic and other recreational drugs or the question of prostitution, would be a mistake because of the practical difficulties with preventing coercion and deception.
What I'm suggesting here is that a lot of people who think that the basic premise is sound, that people should be able to do with their bodies whatever they please, so long as there's no coercion or deception, nevertheless worry that we can't eliminate or even significantly restrict coercion and deception if the general libertarian position would be used as a basis for public policy.
Indeed, as they note, there are difficulties even in defining coercion and deception and in saying what is to account as coercion or deception. In the case of coercion, what is to account as psychological pressure? In the case of deception, what is to account as disclosure of relevant information?
Now, of course, there are others who reject the moral premise of the general libertarian position. They recognize a legitimate realm of freedom or autonomy in matters concerning the body, including centrally-made decisions about health care and even declining treatments. But they do not have a view, according to which legitimate exercises of rights to choose are instanciations of a broader, more general or abstract right to control one's own body or to do as one pleases so long as there is no harm to others. They don't accept the premise of the general libertarian position.
In rejecting the concept of the body as a form of property, belonging to the person whose body it is, so called self-ownership, they do not embrace the view that the body is the property of the state or society or in many cases even of God, rather, they hold an understanding of the body as an aspect of the personal reality of the human being such that it is not properly regarded as property at all or the property of anyone including oneself.
For people who take this position, and I take it to be Leon's position, it's certainly own my position, the fundamental concern about live organ donation is a concern to avoid a social sliding into the commodification of the body and of bodily organs, whether or not there is an exchange of money involved. The question for people like Leon and me is then how to justify living organ donation in cases where it strikes us as plainly justifiable and even laudable, in view of the fact that the donor's health is always impaired at least temporarily in the process of donating an organ. I take that from Ginger's paper.
Having in mind the general principle of medical ethics that, as Leon puts it, "a physician should not violate the bodily wholeness of a patient for someone else's benefit." Now I agree with Leon that the attempt and I'll quote him again, "to get around that wise constraint on physicianly power by invoking general beneficence and the moral, psychic and spiritual well-being of the donor seems a large stretch."
I agree with Leon that we do not want physicians making decisions to remove healthy organs based on the physician's assessments of whether the act of organ donation will serve the moral and spiritual well-being of the perspective donor in ways that compensate for the damage that will be done to the donor's physical health in the operation to remove the organ for donation.
But then where does that leave us? Perhaps, perhaps we are left with Leon's somewhat startling conclusion, "I would much prefer to say that the operating on live donors is an out and out violation of the traditional medical ethic, yet then argue that it is humanly justifiable in some, but not all, cases, especially spousal donation and parent-to-child donation".
Now this is certainly not a conclusion I like. Nor I gather is Leon himself comfortable with it. Before embracing it, I would want to consider as carefully as possible justifications for living organ donation that conceive the surgeon and those assisting him as serving the common good of the donor and recipient as friends. And here I am using the term in its richer, Aristotelian sense. So in this sense, even parent and child are friends in the relevant sense. Spouses are friends in the relevant sense.
But without the reduction of the benefit to the donor to the status of some sort of psychic satisfaction or even moral or spiritual betterment. I do want to resist what Leon wants to resist in that area.
Now perhaps no such justification can be made to work, and we are left with Leon's conclusion. But I wouldn't want to say that before hearing from Gill and Alfonso and Diana and Peter. I'm singling them out as the Council colleagues that I know have thought about this question, but my other Council colleagues, too.
Thank you, Ed.
PROF. SCHNEIDER: Since somebody needs to start us off, I would be happy to try to do so. And I have tried to think about this since our last meeting. I found myself somewhat at sea because I recognized so little of the arguments that were being made.
Let me try, as briefly as possible, to tell you some of the ways in which I approached this from I think quite a different point of view. Let me first confess any conflicts of interest that I have and tell you what my experience is that illuminates what I'm saying.
I am the relative of a recipient of two transplants, and I have done a very great deal of my research some years ago amidst dialysis patients who were of course themselves primarily anxious to receive transplants and many of whom had received transplants. I spent enough time amongst them that I became good friends with a number of them. I hope they would think so too. It is their lives and experiences that animate what I am going to say.
The first thing is I guess while I admire all of the papers that I've read emanating from the Council for their intelligence and their scholarly achievement, if I were writing them I would have written them in a very different sort of way.
First, I find an absence of a really passionate sense of the good that transplants can do. There is, of course, an acknowledgement that transplants may improve health. It's really a lot more than that. First of all, of course, for many kinds of transplants, it's not a question of improving the recipient's health. It's a question of improving — of making possible the recipient's continued life.
Even with kidney transplants where life itself isn't at issue, the difference between being on dialysis and having an actually functioning kidney is huge. People who are on dialysis actually report levels of happiness that are not all that distant from those who are ordinarily healthy people. When they receive a transplant, they report that their lives have been transformed, that they had lost track of what it really means to be healthy, and they glow with the satisfactions of discovering what health can be like.
Similarly, I think that I would have been somewhat less ambitiously concerned with detailing the disadvantages of donation from the donor's point of view. For example, the questions about the risks to the donor are questions at least for the kidney transplant that have been thought about for a long time and it's not a question where you can ever say that you have fully been able to establish all of the possible risks, but the suggestion that there are some long-range risks that are so ominous that they need to be taken very, very seriously strikes me as being overdrawn.
There is even some interesting literature from Sweden, I think, that suggests that the mortality rates of donors are about a third of those of the population and that is if you ask at a particular point in time after the donation whether the donor is still alive, the donor is much more likely to be alive than the average citizen, similarly situated citizen would be. And of course, that's in substantial part because donors are picked rather carefully.
But one of the standard suggestions is that donation is about as risky as extending your commute by a certain number of miles every day. In other words, it's within the range of risk that people take all the time without ever thinking about having done so.
More to the point, what I think we don't hear very much about is other kinds of effects that the donation has in other parts of the motivation that people have for donation. And one of the things that has puzzled me the most is what I would describe as something almost approaching, certainly is a very stringent level of skepticism about altruism and a kind of suggestion that it's hard to understand people who are behaving altruistically by donating organs.
The response that you get from donors when you ask them whether they would do it again is somewhere ordinarily in the 90s, 90 percent of the people say they would be happy to do it again. It's very hard in social science literature to find rates of response in the 90s for almost anything, much less something as dramatic as giving an organ.
In fact, what a substantial number of donors say is that they have never done anything in their lives that is as gratifying and important to them as having donated the organ. And some of the studies suggest that donors turn out on average to be happier people, possibly because of the donation and the satisfaction that people get from having done good in the world.
Similarly, there is an emphasis on the problem of coercion, whether donors are somehow being coerced. Well, to some extent I have to say leaving aside questions of what coercion might mean, a certain amount of familial pressure does not seem to me to be entirely out of place in these circumstances, and I'm prepared to live with a certain amount of what you might call coercion.
In any event, the attempts to ferret out coercion have not been very successful and here, I'm relying on the most extensive study of this which is the Simmons study which is a book on — which tries to investigate the problems that may arise with donors of inter vivos kidneys.
The next set of questions where I find myself a little at sea have to do with the — I guess it's the social consequences of a system in which organ donation is possible. Some of that is put in terms of a fear of commodification. Some of it is put in terms of the moral and I guess cultural and psychological importance of embodiment.
I've struggled hard to understand these arguments. I went back and I read Leon's arguments in the other papers. Leon says that his arguments rest on ideas, on I guess intuitions that are hard to articulate and if they're hard to articulate, I guess it's not quite so puzzling that they're also hard to understand.
I think that they turn on a false perception of the actual psychology of donation and reception. When people think about giving organs, I don't think that they think in anything like the terms of commodification or of some violation of themselves. I think they think in quite personal and direct terms about the good that they can do in the world, sometimes for easily identifiable people and sometimes for people more generally.
So I think that it's important to understand what the actual psychology of donors is and that psychology is one that does not focus on these questions of mutilation and does not focus on questions of transfer of property, but rather focus on the things that human beings can do for each other.
I guess the last thing I want to say is one more word about altruism. I would like to see the altruism sort of what I would describe as the anti-altruism argument described more thoroughly. It seems to me to start, but also if I'm understanding it correctly, almost to stop with the suggestion that there are some kinds of altruism of which we would not approve and the usual example is that you would not approve of a donation of a heart.
Well, even there, I would like to say that there are all kinds of sacrifices of life that we do approve of, sacrifices of life for other people and even for causes. The Christian tradition surely begins partly "greater love hath no man that he would give up his life for his neighbor." So, even with the extreme version, I'm not quite so comfortable that it's a straightforward, obviously this is impossible, so let's not think about it.
But the kinds of donations that we're talking about, livers and kidneys and so on, are not intent to be donations in which life is sacrificed. They're very far from that and then I'm not sure why — I'm not sure what the argument, as you might say — against altruism would be? A number of other questions, but I think I've said enough for now.
CHAIRMAN PELLEGRINO: Thank you very much.
DR. FOSTER:I have a question about just one point. I presume that most of your conclusions here about living donors have been in family situations and people who are known to each other, not just — most of these are probably not anonymous donors along these lines.
Do you think the argument would still hold about the altruism and so forth if we moved into the next discussion, that is, that this was commercialized in terms of paying for organs. In other words, what I'm trying to ask at the beginning is are the conclusions — I'm perfectly willing to accept the safety things that you have talked about and never thought about the commute thing which is interesting, but would the supply in another set of donors that would be probably quite different from the living donors that we now experience?
PROF. SCHNEIDER: Obviously, there's a lot less literature, as you're suggesting, on the nondirected donation. I don't know of any literature that suggests that those are so radically different from the other kind.
I do want to say that I think that there is a danger in thinking about sales. And I see it in a lot of the papers. The suggestion seems to be that if something is in commerce that it is being regarded as what a lawyer, an economist would call a fungible economy. Here is a bushel of wheat. Bushels of wheat are pretty much — it doesn't matter which grains you're getting, it's just a bushel of wheat. And that people regard something that they're selling as something that isn't really very important and isn't really very valuable except in a very commercial sort of sense.
I just don't think that that's an accurate description of the way, the many kinds of ways that people can relate to things that they're buying and selling.
Yesterday, I arrived a little early in town and I went down to M Street to an antique store that I'm very fond of and there are some things that I would like to buy that would mean a very great deal to me and that I would cherish, if I persuade myself that I can do this. And I think that it's quite possible that if people are in some sense paid for their donation that the real motive for it will not be I want the money, but will be much more important and admirable kinds of reasons.
So until we know at least a lot more about how such transactions would work, I'm very leery of assuming that they will work like a wheat market.
CHAIRMAN PELLEGRINO: Dr. Schaub?
PROF. SCHAUB: Robby has given new meaning to Aristotle's assertion that friends hold all things in common. I'm not sure that's what Aristotle meant when he said that. I mean it may be that friends strive to hold all things in common, but in this case, in the case of organ donation to effectuate their generosity, they need the cooperation of doctors. And I'm sorry to say that it does seem to me that live donation is a violation of the medical ethic, so I think I agree with Leon about this.
And if live donation is a violation of the medical ethic, I don't see why it's allowable, why the violation is allowable in some cases, family and friends and not allowable in other cases. I don't see how to draw the line between family and friends and non-family gifts.
If the reason that we make this exception is because of the generosity of the act and generosity is a virtue, it's just as generous, maybe more generous to give the gift of life to a stranger. There's certainly more self-interest involved in a family donation and we see that doctors have not been able to enforce this distinction. There has been a steady increase in nondirected donation. Nondirected donation was apparently at one point heartily resisted, but that resistance has crumbled.
Let me sketch a scenario. We know that all of the major religions have now approved of live donation. What if a particular sect were to go further and strongly encourage or maybe even require live donation? Some denominations have first confession or first communion. This denomination would have first donation. All men are brothers. This group of believers love their brothers enough not just to turn the other cheek, but to offer up the other kidney. Would there be any reason why transplant surgeons should decline to accept those offerings?
So I mean it seems that what we've done is we have allowed this argument from generosity to override the medical ethic and once we've done that I don't see how we set bounds to generosity. And I guess I would argue that the natural check on generosity, if it is in need of a check should be the ethical principles of the professions. So if you looked at the criminal justice system, there might be plenty of mothers out there who are willing to take the murder rap for their guilty son, but prosecutors are bound by the evidence. They're bound by guilt and innocence. And in the same way doctors in the past were bound by this medical ethic that disallowed certain natural generous impulses of people.
CHAIRMAN PELLEGRINO: Thank you.
Dr. Schneider?
PROF. SCHNEIDER: It would help me a lot to know what this medical ethic is and where it comes from and whether it still makes sense and if there is such a medical ethic and if it's a medical ethic that really made sense at one time, did it partly make sense at that time because organ transplantation wasn't possible and there was no other reason that physicians would be chopping away at one person on behalf of another.
Medical ethics have changed an awful lot in the last century. What principle of medical ethics is it that is so worthy of preservation and does it still make sense?
CHAIRMAN PELLEGRINO: Does someone want to answer that?
PROF. SCHAUB: Yes. I would — Leon spells it out briefly in his note on this paper. He goes back to the Hippocratic Oath. He does not think that the Hippocratic Oath has been superseded and he says that the principle is that the physician acts always and only for the benefit of the sick, not the family, the hospital, the larger society or in the present case, for some other sick person. And he certainly would not violate the bodily wholeness of the healthy patient for someone else's benefit.
DR. FOSTER:But I think that — I mean if you go back to the Hippocratic Oath, it really fundamentally comes out to the primum non nocere, first do no harm. But that doesn't hold — we do harm all the time every time we do chemotherapy, we do harm to a patient in the hope of a greater beneficence there. So I think that Leon and I think he's talking about not doing any harm here. I may be wrong, but that's what I think.
PROF. SCHAUB: I think not, actually. I mean it's interesting at the beginning of this, it's just one paragraph here from him, but he says that he doesn't believe this principle of "do no harm" plays such a magisterial role in medical ethics or medical practice, so he is not hinging his exception on "do not harm." He's hinging it on what he says is the duty of the physician to act always and only for the benefit of the sick.
CHAIRMAN PELLEGRINO: I have Dr. Lawler and Dr. Meilaender and then Dr. Schneider. And then I'd like to make a quick note about the principle, the first principle of medical ethics.
PROF. LAWLER: I almost want to hear the footnote first.
(Laughter.)
DR. LAWLER: But Diana was very eloquent. On the other hand, the objection that was raised last time still stands. How then do we justify cosmetic surgery? How then do we justify nipping and tucking which doesn't affect — do the patient any good, and in fact, there's an element of coercion there. People get nipped or tucked and so forth to be more competitive in the marketplace. So chemotherapy is to do harm in the hopes that you do good, right?
But plastic surgery, cosmetic surgery, not reconstructive, but designer cosmetic and plastic surgery is hard to know how we justify that. And an obvious point would be some of that surgery is no more dangerous and some of that surgery I think is more dangerous than being the surgery required to be a kidney donor and obviously the surgery required to be a kidney donor does someone some good. Nipping and tucking, strictly speaking, does no one any good except in an amorphous of aesthetics in a way.
So I agree, at least with the one point that was made, that maybe the reports are a little bit weak on discussing the good that we pursue through the donation of kidneys. And maybe they're a little weak on really outlining the dilemma presented to us by the stage of science we're at now and it's something like this. Kidney transplantation is getting better and better. The side effects are managed, better people are living longer.
Dialysis remains relatively constant and whatever the studies show about the subjective happiness really a very brutal thing, a brutal debilitating and really over a long — over some period of time, a killing thing. And because transplantation is getting better, dialysis remains constant, more and more people want transplants. The waiting list is getting longer and preventive medicine, I think Dr. Hippen was right to explain, although I'm all for better medicine, although I may not look like it, I really wouldn't change the fundamental situation of the waiting list getting longer. And so given the very specific bad situation we're in, maybe we do need to say more about the good that is a transplant.
And so I actually — I think I agree with Leon that finally you can't reconcile the ethical injunction of the profession and with donation. On the other hand, there's something to be said as Robby said for the freedom people have to do good for their friends, especially when the good is quite good and the risk isn't, in a certain way, all that great. And so all professional principles have to be applied prudentially. So I see the problem in principle. It's not that dramatic to me in practice.
So I'm certainly all for, I'm not for like commanding it, but I can see the good that is done when you donate organs to friends or even to strangers, although the objection Diana raised with the religion that would require it is troubling. Doctors are good at many things, but they may not be so good at discerning the intention of their patients or making decisions on the basis of intention. So I do see the slippery slope here.
Nonetheless, I'm not as troubled by it, given the dilemma that has been presented to us by a very specific stage of scientific development.
CHAIRMAN PELLEGRINO: Dr. Meilaender?
PROF. MEILAENDER: You wanted to come back to the question of just what it is that the physician's principle is. I don't think — I think Leon was right. The issue here is not first do no harm, it's be wholly attentive to the well-being of the patient. And if the friendship language is appropriate anywhere here, it's actually sort of physician as friend. Just as the lawyer needs to be wholly attentive to the well-being of his client, not the larger question of whether society would be better off he weren't so attentive to the well-being of this client, so the physician is not to regard his patient as a public resource, but rather as someone to whom he gives his best skill and attention.
I think that's the issue and that's what causes the difficulty for living donation. It's not just that you're cutting somebody as in cosmetic surgery, it's not just that in a certain sense there's a physical harm being done. It's that it raises questions about whether we have compromised that single-minded attentiveness that physicians are to give their patients.
Now that gets compromised in some other ways sometimes, but we nevertheless continue to be committed to it in many ways and actually, most of us who are patients rather like, would rather like to think that our physicians are pretty committed to it as well.
So I think that's the principle and then it seems to me whatever we end up saying about this, about living donation, where I'd want to back off, Carl, from the direction that you were pressing us is that I wouldn't want to pretend that this wasn't a serious question or that I couldn't understand it. I can understand it pretty well. When I go into the doctor's office, that's exactly the attitude I'm looking for from him. So that if it's to be compromised, if there's an important good here that's to be compromised, then I want to think through the good.
I don't want to take for granted that because we've got a practice that seems to compromise it, the practice must be okay and we can just proceed. Maybe it is okay and maybe we can go a better job of explaining why it's okay than has been done before.
That's perfectly all right, but there is an important good there and it would be very, kind of thin gruel we were to offer if we didn't try to think our way through that, I believe. That's what I think is at stake.
CHAIRMAN PELLEGRINO: Thank you.
PROF. SCHNEIDER: Well, first, since my attention has been drawn to the duty of the lawyer to be only in the service of his client, it's not true. It's radically not true. The lawyer is also an officer of the Court and the lawyer has ethical obligations not just to the client, has ethical obligations to the system and has ethical obligations to the people that the client may be dealing with. The lawyer has obligations to report some of the illegal and demoral things that the client may be involved with, has an ethical obligation not to do what would be in the interest of the client, for example, like putting the client on the stand to commit perjury and the lawyer is widely thought to have an obligation to try to maintain a distance from the client exactly so as to be able to try to repress the client's desire to do bad things, not just illegal things, but bad things in dealing with other people.
Now you can say that in some sense that's in the true interests of the client. The client certainly doesn't think so and the lawyer often doesn't think so, but my question is still about this duty of the doctor to serve only the interests of the patient and — or in this case it says the benefit of the sick. And I'm not sure how that applies in this situation.
I mean the fact that the Hippocratic Oath is, I believe, almost never any longer exacted from future doctors and new oaths have been substituted, am I not correct?
CHAIRMAN PELLEGRINO: No, it is given in most schools, but it is highly modified.
PROF. SCHNEIDER: Okay. Highly modified. And as Oliver Wendell Holmes said there is no more revolting justification for an idea than it was the practice in the time of Henry IV.
It seems to me that this rule is hard to understand in this sense. This is being done for the benefit of the sick. It is being done — the operation is being performed for the benefit of the sick. And in an important sense it's being done for the benefit of the person who is being subjected to the operation. If there is one thing that modern bioethics seems to say with force and unanimity it's that we want the person affected to be deciding what is valuable to him or to her and this donor has decided that this is something sufficiently valuable, this is something the donor wants to do.
So I'm not clear that this is a principle of medical ethics that applies very aptly in this new situation.
CHAIRMAN PELLEGRINO: Dr. Meilaender.
PROF. MEILAENDER: I have some other things I'll get on the list for, but if that is the thing that modern bioethics above all wants to say, then we should set our face squarely against that. That's an arguable principle and we should by no means just acquiesce.
CHAIRMAN PELLEGRINO: Dr. Carson?
DR. CARSON: First of all, on the Hippocratic Oath, I give two or three medical school commencement addresses each year and [in] almost every one [it] is still administered.
And also, I have to say it was very wonderful to hear Dr. Schneider talk about what lawyers are supposed to be like. It's very nice to hear that.
(Laughter.)
PROF. SCHNEIDER: Spoken like a true physician.
DR. CARSON: That's refreshing. Now I had a patient a few years ago, a teenager, who had a brain tumor. We took it out. He did extremely well. Several months later to be involved in a horrendous automobile accident in which he lost one of his limbs and had severe injuries to others.
His mother decided that she would donate two nerves, very long segments of nerves — some of you might have seen the story in the news — which meant that certain parts of her body would be without sensation. And it was done. The grafting turned out to be quite successful. One could make the argument that she should not have been allowed to do that because she was in some way damaging her body. And yet, you could also look at the bigger picture here. She was doing something very important for her son and she was doing something very important for herself psychologically. So I think you always have to look at the big picture issues here.
You know, going back to surgery that may be dangerous. Peter appropriately pointed out some of the things that happened with plastic surgeons and cosmetic surgery. But as a pediatric neurosurgeon I'm guilty of cosmetic surgery too because sometimes we have children with significant cranial facial abnormalities. These are things that would harm them, in any physical sense, but they would be horribly harmed by the emotional trauma that they go through because in school other children are not kind to them. And we can greatly ameliorate that situation with surgery that, in fact, can be life-threatening.
So all of these things have things that you have to look at. You know, even the concept of giving one's life for another. In the military, when someone throws themselves on a hand grenade to save their colleagues, they're given a Medal of Honor. So why is it so different when somebody wants to give a portion of their body to save someone else? I just think it's a big picture issue and when you try to just take one segment of it, it becomes more complex.
CHAIRMAN PELLEGRINO: Thank you very much. Dr. George.
PROF. GEORGE: Well, I hope that someone will try to assist with my proposal to seek a justification for living organ donation that does not involve what I've described as Leon's startling conclusion that we accept that living organ donation violates the principle of medical ethics, but we should go ahead and be willing to violate it in certain cases because of the competing goods to be achieved.
But let me just say why I think there is a serious issue here. I guess this is sort of a response to Carl. I think I'm basically on Carl's side, on the underlying substantive question of living organ donation as I gather Leon is. But I do think there is a serious issue here that really can't be waved away. The ethic makes sense, I think for the reasons Gil articulated and others. That's fundamentally why I would like to find a justification that doesn't involve compromising it.
I don't think it's sufficient as a reply, Carl, to Diana's challenge, to say that well, the operation of removing the healthy organ from the donor, is for the benefit of the sick. I think the reason that's not responsive is that the operation with respect to the donor himself and in respect of his health only diminishes it.
So yes, you're going to improve the health. That's the whole objective and everybody here, the donor, the physician, everybody involved is collaborating toward that objective, is to improve the health, perhaps even save the life of the person for whom the donation will be made.
But with respect to the individual on whom the doctor is now laying hands, to remove the organ to be donated, I think it's fair to say that his health is only diminished, maybe not much, but only diminished, unless — unless we're willing to say what Leon rightly in my view wards us off of saying which is that well, his overall well-being is improved, his now being the donor, his overall well-being is improved because while his physical health might be damaged at least to some extent, that's got to be taken as part of a whole package which includes the psychic, perhaps moral, perhaps spiritual betterment and achieving an objective that he himself has which is to make the donation.
I think Leon's right not to want to go there with that expansive definition of well-being that would enable us to comfort ourselves by saying well, the physician actually isn't doing any harm to the donor. He's just providing a net benefit to the donor since the psychic and moral and spiritual betterment outweighs any damage to physical health.
I do think it's important to reaffirm that the goal, the object, the justifying point of medicine is health. I think it's also very important to reject any utilitarian approach to these questions which would try to justify the direct doing of harm by reference to an overall net advancement of some conception of a greater good. There are independent reasons I think that won't work. I mean we can go into them if people want to argue about that.
So where does that leave us? Well, it either leaves us in Diana's situation or Leon's. I take the difference to be that Leon is willing to compromise the medical, the principle of medical ethics and Diana is not willing to do that. Or, we need some other justification which is what I was trying to invite my colleagues to help me to construct that would enable us to say truthfully that there is no compromising of the traditional medical ethic despite the diminution of the health or the damaging of the health of the donor, not because the psychic benefits outweigh it, but because of something having to do with the common good of the donor and the person he will be benefitting which is advanced by the physicians assisting them in moving the kidney from donor to beneficiary.
As I say, I don't know that such a justification is possible, but I think it's worth thinking about and trying to construct, trying to understand. Before we say that either we have to compromise the traditional principle of medical ethics or we're going to turn our faces against, what strikes me intuitively is the very great and laudable practice of living organ donation.
CHAIRMAN PELLEGRINO: Thank you.
PROF. MEILAENDER: I want to make a number of points, some of them come back to take up some of Carl's comments and others move beyond and none of them as a real long point, but just various issues.
The point, true enough I guess, that Carl made that donation is within the range of risks that people take all the time, though true, doesn't seem to me to get at the kind of moral question one asks. We don't just ask questions about range of risks, we ask about the kind of risk, is it the same kind of risk or not. That's what we need to think through and that's what all this talk about the body and the relation of the body itself is about, whether it's the same kind of risk as increasing one's commute. And I don't actually think it is. I'm not trying to argue that it's different right now, I'm just saying that that's the question that would need to be answered. It's not sufficient to show that statistically it might be about as risky as something else that we do.
Another one of your formulations, Carl, and I believe it's true that the actual psychology of the donor is that they're focused wholeheartedly on the good that they can do in the world. And God bless them, that's a good thing, no doubt. But again, it's by no means the only moral consideration.
If, in fact, you ever ran into a person whose sole moral consideration was the — was sort of the good that they can do in the world, they would be extraordinarily inhumane. You have to ask about how you do this good. Dickens had fun with purely philanthropic characters. So again, it's one consideration, but it's by no means the only kind of moral question that we ask ourselves.
I want to say one more word on the doctor being sort of devoted to the good of the patient and not regarding the patient with justice or resource for the good of others. I think even — for better or worse, and I mean there are complicated questions, but even in the practice of living donation, we can see that come out. We're told that sometimes, for instance, doctors will say that a potential donor is not a good tissue match because of a sense whether on the basis of something fully articulated or only partly articulated, that this person has hesitations and reservations about actually doing it.
Now whether that's the right way to handle that question, I don't know and it's not a very straight forward way to handle it, but it's a sense that there's a kind of a good owed to this particular person, even if some other good that they'd like to accomplish can't come out of it. I think you can see it there and I think it does remain important, even if it's not the only consideration.
One of the deeper issues that Carl raised was about altruism and sort of why be skeptical about people being altruistic. Actually, of course, there are a lot of reasons to be skeptical about altruism on many occasions, but this particular instance, why be skeptical about it. And it isn't so much, I think, I don't think the issue here is being skeptical about it as wondering about what altruism does or does not justify.
If we've got five people here, all of whom could efficiently use one of my kidneys, and one of them is my daughter, I not only don't think I have to randomize the choice among those five, I think I ought not randomize the choice among the five. That is to say I think there are certain kinds of special obligations that weigh in in a way that some sort of general altruism doesn't. That's why even Robby picked up Leon's child/parent donation. Parent to child has a slightly different ring and is not quite the same.
I think one has to think through all these different kinds of things, not on the basis of just of some general altruism, but on the basis of particular relationships in which we stand and how those do or do not bind us.
And then the last thing I'd say, I mean I think Robby is not wrong to continue to press the point he's pressing and I'm not terribly persuaded that the move to a friendly, although ingenious that you tried at the start works, I think I would rather try to make the case on the basis of generosity, which his a word I like a little better than altruism in this context, but understanding it as a human generosity that does have limits, may have limits in terms of to whom it should be directed. Certainly has limits with respect to what organs it would be appropriate to use. That's not unproblematic. It does teach us to sort of think with the body as just a thing that we use in some ways and so there are dangers in it.
It raises questions about the professional ethic, but the professional ethic of doctors like all professional ethics doesn't exist entirely in a vacuum. It's not the whole of the moral life. And so one could go to work on that. But if I were going to try to make the case, I think I'd make it on the basis of generosity, but a limited generosity appropriate to human beings who are embodied, who do stand in special relationships to particular people and therefore who have obligations of different kinds. That seems to me to be the better way to try to go.
CHAIRMAN PELLEGRINO: Okay. Professor George, you might want to respond.
PROF. GEORGE: Well, I just want to make sure that the recorder got the ingenious part.
(Laughter.)
PROF. GEORGE: Gil, I like the approach and I appreciate your taking up my suggestion that we try to think about a way to preserve the traditional medical ethics principles while justifying living organ donation. But I would want to hear a bit more and I'm very, very open to being persuaded on this. I'd want to hear a bit more about what it is about generosity, especially if it were abstracted from considerations of the common good of friends, again, in this Aristotelian sense, that would do the work of justification in an analysis that took as its starting point the problem created by the fact that the surgeon's operating on the donor does nothing but nothing but diminish or damage the health of the donor, at least nothing in respect of the health of the donor, but diminish it.
CHAIRMAN PELLEGRINO: Dr. Gomez-Lobo?
DR. GÓMEZ-LOBO: Let me take a stab at Robby's challenge. How about a simple-minded solution along these lines? I would say it is sometimes reasonable to give up a good, sometimes an important human good for the sake of another good. There are people, for instance, who renounce having children or having a family which is a very important good for the sake say of a task which requires them say to travel far and to dangerous places, something along those lines. So I would think the person who is a donor is someone who is giving up a very important good for the sake of very precise good of another person. That could be my first step.
Now the next step which is a troublesome one would be to say that there is a principle, a traditional principle of medical ethics to which, of course, I generally subscribe, but which governed the actions of physicians before the existence of transplants. I think that the care for the patient's good, for my own patient, as a physician is I find very solid. But then I would like to say but it does not cover these new cases, so that a physician would not be held accountable by that principle to the action she's involved in now because what the physician would be doing would be pursuing the good of the recipient and would just engage in an action of well, instrumental action which would be an action of renunciation on the part of the donor.
PROF. LAWLER: Right. I'm not sure how this is good for the physician because physicians are here all about health, right? But of course, there are human goods higher than health like friendship, like moral virtue, the moral virtue of generosity. But the moral virtues and the common good sometimes conflict with health because they're based on the opinion that health is not the highest thing, but it puts a physician in kind of a problem, right? Because as Diana pointed out, in order for me to exercise my moral virtue of generosity and give you my kidney, I require the assistance of the physician whose bottom line is health.
So as a physician, is a physician allowed to surrender the bottom line of health in order to facilitate my pursuit of moral virtue?
DR. GÓMEZ-LOBO:No, my point was precisely to describe the action as a pursuit of the health of the recipient.
PROF. LAWLER: But there are obvious limits to that, right? I can't you my heart, we agree on this, right? But can the physician even recognize that? When treating me, can the physician take into account the health of someone else?
PROF. GEORGE: Alfonso, I think if we go down this road, we would probably be pressed to conclude, be forced to conclude logically, that there actually wouldn't be anything intrinsically wrong with someone donating a heart at the cost of his own life and there wouldn't be anything intrinsically wrong with a physician performing that operation. But we might nevertheless conclude while there's nothing intrinsically wrong with the act, it's an act that nevertheless should be prohibited because the social consequences of accepting it would be so grave as to put a lot of people at risk and perhaps also have deleterious effects on the medical profession and on individual doctors and so forth.
Maybe one thing we ought to get clear about in the argument when we use as the limiting case the donation, the possible donation of an organ like the heart where the donation result will result in death, maybe we should get clear on whether our opposition to that is based on the judgment that it is intrinsically wrong and as a matter of strict principle it would be wrong to do it, or based rather on a prudential judgment that it would be an unwise policy that would permit it.
DR. GÓMEZ-LOBO:I would stick to the strict principle. And the way of blocking the slippery slope there would be to say that the action of the physician and the extraction of the heart is killing, whereas the extraction of the kidney, it would not be.
PROF. GEORGE: I am not sure about that, Alfonso. The jumping on the grenade is not an act of suicide. Now the removal of the heart will result in death, just the way the jumping on the grenade will result in death, but the removing of the heart, the death that results from removing of the heart might be an instance of indirect killing, just as the jumping on the grenade is a case of indirect self-killing or indirect killing because after all, it's not part of your objective to get the person dead. In removing the heart, if miraculously the person continued to live, without the heart, you would have accomplished everything you set out to accomplish, the death not being necessary as part of what you're actually trying to achieve.
PROF. MEILAENDER: I'm not sure about the effect on that one, Robby. I don't think so. I think that — remember, the description of the act is not just what you want in some general sense, it's a description of the act itself or the intention understood in that way and I don't think that you're going to be able to conflate the heart excision with the kidney one.
PROF. GEORGE: Can you distinguish the jumping on the grenade then?
PROF. MEILAENDER: The death is not just the result of the act, it's the aim of the act.
PROF. GEORGE: That's not true in jumping on the grenade.
PROF. MEILAENDER: I agree with you on the grenade.
PROF. GEORGE: So what's the difference between the two cases?
PROF. MEILAENDER: Because all he's doing in jumping on the grenade is shielding his comrades with the foreseen result of death, if he has time to think about it which he probably doesn't. But what you're doing is you're aiming at the removal of the organ necessary to continue life.
PROF. SCHNEIDER: I still find myself baffled with need of help here. As I'm understanding the position at the moment, it sounds to me like the position that is simply based on an asserted definition. The physician is interested in the health of the physician's particular patient and health defined in a pretty physical sort of way. What I am trying to understand is why that is the definition of the physician's purpose we have to understand.
I do not understand it to be a correct description of the way that physicians actually act when they make decisions. Physicians make decisions about social welfare against their own patients' welfare — or at least perceived welfare — all the time. They have to make rationing kinds of decisions. They have to make decisions about the use of antibiotics that may seem to be beneficial to one patient and not beneficial to patients as a whole. So my question is why do we accept this definition? And should we accept this definition?
CHAIRMAN PELLEGRINO: Dr. Carson?
DR. CARSON: You know, going back to Robby's issue and distinguishing, I want to again bring up the example that I gave early on about the lawyer who was a C-1 quadriplegic who basically persuaded all of the reluctant medical profession to take away his life support and I think he was allowed to die. If, in fact, in his request for death he had decided that he wanted to give his heart to his daughter, I have a hard time distinguishing how that would be any different than just letting him die, number one.
Number two, I know an awful lot of transplant surgeons and to be honest with you, when someone is willing to donate an organ, they don't go through a lot of philosophical machinations. They go through the standard let's check this patient out. Let's make sure there's no coercion. Let's make sure that they're medically sound and all of those things are done, but it does not become a big philosophical argument.
CHAIRMAN PELLEGRINO: Thank you. Anyone else?
PROF. GEORGE: Your footnote, Ed.
CHAIRMAN PELLEGRINO: The footnote is awfully long.
(Laughter.)
CHAIRMAN PELLEGRINO: It's a little bit like the footnotes in the Hamburg, that the Germans — for that, more footnote.
Just quickly, I have difficulty — Leon is not here, so I have difficulty criticizing the reasoning he put forth, so I'm reluctant to do that. All I would say is I think what's going through my mind is that the conclusion to do wrong so that good may come from it is an intuitional feeling he has, I think is a very bad way to argue the case because if we go to intuition modifying a principle, then I think that's not a justification, number one.
Number two, I do believe it can be reconciled and some of you have already touched on this, but I would say the first principle of medical ethics is not primum non nocere. It is to the principle of beneficence, that is to say to act in the way that will benefit the patient most. We can justify that if you want.
Dr. Schneider, I've got reams of things I've written which I don't want to repeat here on the fact that I think there's a moral foundation for the precepts that bind us in medicine. It isn't a social construction. That's an inflammatory statement, I realize, but I think it can be done.
Not to waste time here, I think that we need to look at the good of the patient as something more than the medical good. I think that's the restriction on Leon's argument, that he's at the level of medical good only.
I think of four levels of the patient's good. The medical good is the lowest. The second is the patient's conception of what is good. The third is the good of the patient as a human being, the good for humans, as we know it in classical philosophy. And then the spiritual good, which is the highest good.
Now you can make arguments at the top three levels that you're doing good for the patient by taking a kidney, providing there's some proportionality between the risk and the good to be done. Autonomy of the patient does not mean that the physician has to do it. So you have the question then it's more complex than we've been talking about it here. A physician has to decide whether in fact it does fit his notion of the good of the patient.
So I think all these things need to be discussed and I don't want to take your time now. But for me, this act would be justifiable, largely in terms of the upper three levels of the good of the patient, rather than just the medical good and the physician is charged with more than just the medical good. That's a summarization of how I'd respond to it.
Yes?
PROF. LAWLER: What is it in the physician's training that allows the physician to discern the spiritual good of the patient?
What is it in the physician's training that allows a physician to be particularly good at discerning the spiritual good of the patient.
CHAIRMAN PELLEGRINO: They're not. The physician doesn't determine the spiritual good. The patient determines the spiritual good. But it is a fact from the good of the patient. So for an example, let's take the situation you brought up. There was a spiritual sect that said that one ought to donate kidneys. For that patient, that would be the highest good. If you take the Jehovah's Witness, the highest good for that person is not to have blood. It violates Books, I think it's 3 and 9, of Leviticus. We may or may not agree with that, but the patient sees that as his highest good, so high that he will sacrifice his life. Now whether I do it or not is the autonomy of the physician. In consideration of autonomy, ... the patient and the physician both have autonomy interacting.
So that spiritual good then is determined by the patient, however he wants to do that. I don't have to go along with it, but I do have to respect the patient and not impose my will upon him.
PROF. LAWLER: But you as a physician still have to have spiritual knowledge just to know whether or not the patient is nuts, right? In other words, you have to determine whether or not to go along with it.
CHAIRMAN PELLEGRINO: No, no. That isn't a determination. The determination of whether I think I am able to do that to maintain my own personal and professional integrity. That's the side of the autonomy of the physician — to protect his or her professional and moral integrity. That's why when you ask for assisted suicide I have to say, "No, I'm sorry. I can't do that."
PROF. LAWLER: Then in some deep way you might agree with Diana because it may be her spiritual good to donate a kidney, but from the point of view of your autonomy as a physician, you can't recognize that higher good because you still can't do her any harm.
CHAIRMAN PELLEGRINO: That's why I have to say no to the patient, but it's on the basis of a principle, not the basis of intuition.
PROF. SCHNEIDER: May I add one more footnote to the footnote which is permissible in some scholarly traditions?
(Laughter.)
PROF. SCHNEIDER: I was provoked by this constant reference to primum non nocere to go look it up and see how ancient it is. In fact, it's hard to trace its usage in any kind of common discourse about medicine until well into the 20th century. You can trace it back to Hippocrates in his non-oath form. But it then seems to pretty much vanish from medical discourse until the late — mid to late 19th century where you get little shavings of it in that it enters more largely into discourse, into the 20th century. And it can't mean that a doctor can't do harm because doctors do harm in a large, large proportion of their treatments. So it must mean harm in some other way and my own suspicion is that it's simply good prudential advice to doctors to be a little careful.
CHAIRMAN PELLEGRINO: I think, and this is not the place to do it, I would argue with you historically.
PROF. SCHNEIDER: I'd be happy to provide footnotes.
CHAIRMAN PELLEGRINO: I'm happy to provide them on the other side. No, but I think it is a much taxed point, I would agree with that. But I think there's evidence on both sides.
PROF. GEORGE: Well, just for the record, I think another argument we need to have is over the meaning of "do no harm." I would want to contest some points I think with both Dan and Carl about the meaning of that.
CHAIRMAN PELLEGRINO: We are on the subject. It could go on and on and on.
Yes, please.
PROF. SCHAUB: Just a quick question that maybe one of the paper writers could answer. Can individuals make a second or a third donation? In other words, could a kidney donor a year or so later donate a liver or a lung?
CHAIRMAN PELLEGRINO: Does someone want to respond to that? I've been talking too much.
MS. GRUTERS: As far as I know that is possible, but again, they would have to go through the donation process and dependent upon the donation center and the transplant surgeon who would be willing to do that. Now with pancreas donation, partial pancreas donation, that usually is done with — if someone needs a kidney, then someone can also donate part of their pancreas. That's becoming less common according to statistics, but that is definitely the preferred method if there is going to be a pancreatic transplant. So they would also donate one kidney and part of their pancreas and please, any —
DR. CARSON: I can answer that.
MS. GRUTERS: Okay, wonderful.
DR. CARSON: What happens after the first donation is you have to go through the complete donation process for each subsequent organ and the fact that you've done any previous donations diminishes the likelihood that you're going to be accepted. So there are certain cases in which it happens, but in a large number of cases, it can't happen because you're placed in a different medical category.
PROF. SCHAUB: Why would it diminish the likelihood that you would be acceptable?
DR. CARSON: Because, for instance, if you've given a kidney, then you've already compromised your body's reserve. So —
PROF. SCHAUB: So there is an understanding that harm has been done to the donor?
DR. CARSON: There is an understanding that there's not as much reserve there as there was before.
PROF. MEILAENDER: And on some of the arguments we've followed, there's really no reason not to give a second kidney.
CHAIRMAN PELLEGRINO: Dr. Gomez-Lobo, last word?
DR. GÓMEZ-LOBO:Yes. Just a clarification, please on page seven, I was puzzled by the claim "it is also possible to donate all or part of the liver, lung, pancreas, intestine and heart." Can you actually donate part of the heart?
MS. GRUTERS: Yes. Now I don't understand the actual medical how they do that. There's very little literature that I've found that discussed it, but it's part of the heart. Is that correct?
DR. CARSON: Pericardial donation. But in terms of continuing to live other than the pericardium, you know, there's no donations that are done.
CHAIRMAN PELLEGRINO: Thank you all very much. We'll reassemble at 2 p.m.
(Whereupon, at 12:20 p.m., the meeting was recessed, to reconvene at 2:00 p.m.)
