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Meeting Transcript
April 2, 2004


Hyatt Regency Crystal City at
Ronald Reagan Washington National Airport
2799 Jefferson Davis Highway
Arlington, VA 22202

COUNCIL MEMBERS PRESENT

Leon R. Kass, M.D., Ph.D., Chairman
American Enterprise Institute

Rebecca S. Dresser, J.D.
Washington University School of Law

Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School

Francis Fukuyama, Ph.D.
Johns Hopkins University

Robert P. George, D.Phil., J.D.
Princeton University

Alfonso Gómez-Lobo, Dr. phil.
Georgetown University

William B. Hurlbut, M.D.
Stanford University

Charles Krauthammer, M.D.
Syndicated Columnist

Peter A. Lawler, Ph.D.
Berry College

Gilbert C. Meilaender, Ph.D.
Valparaiso University

Janet D. Rowley, M.D., D.Sc.
The University of Chicago

Michael J. Sandel, D.Phil.
Harvard University

Diana J. Schaub, Ph.D.
Loyola College

James Q. Wilson, Ph.D.
Pepperdine University


INDEX

SESSION 5: BIOETHICAL ISSUES OF AGING: DEMENTIA AND HUMAN PERSONHOOD

Guest: William F. May, Ph.D., Senior Consultant

CHAIRMAN KASS:  Could Council members please take their seats so we can get started?

This morning the Council turns its attention in sessions five and six entitled Bioethical Issues of Aging.  First, Dementia and Human Personhood, and second, The Wisdom of advance directives.

We look not at questions about the beginnings of life or our higher powers and their capacity and their development, but at the other end of the life, the bioethical issues and the experience of aging and the care of the elderly.  You'll recall that this was the second of the topics that were recommended at the last meeting that we tried to open up and explore.

This topic is related to but not identical with issues of death and dying.  Questions of death and dying occur at all ages, and questions about the elderly and their care is about much more than dying and end-of-life issues.

We are interested in both the experiential and psychological matters, the experience of growing old and caring for loved ones as well as the legal, social and policy dilemmas that are faced by an increasingly aging society.

A couple of general remarks and then we will move into the discussion.

To repeat, our interest in this topic cannot be simply defined by the so-called end-of-life issues:  assisted suicide, euthanasia, deciding when or whether to terminate life-sustaining treatment. These acute ethical dilemmas are really part of a much larger human and social phenomena:  the changes and challenges entailed in growing old and declining and losing our powers.  And there are challenges here to self and identity, changes in our closest human relationships and, when aggregated across a population, changes in a society as a whole.

Second, these questions are old.  But we do face them in a new context.  The success of modern medicine means that many people are living longer, healthier, often fuller lives.  But it has in recent decades meant and will increasingly mean—unless something is done to reverse these degenerations—longer periods of dependency and decline.  And it means, or it may mean, that the demographic makeup of American society and other advanced nations will be unlike anything in human history.  And here a few facts, demographic facts, I think would be in order.

The United States elderly, those over 65 and older, are presently 16 percent of our population.  This number is expected to rise to one quarter of the entire population by the year 2050.

In the year 1900 there were 3 million people over the age of 65, 4.1 percent of the population.  By mid century 12.3 million people over 65, 8 percent of the population.  Now 34 million people in the United States over age 65, now about 14, soon to be 15 percent of the population.

The oldest old, people 85 or older, make up the fastest growing segment in the United States population.  In 1996 an estimated 3.8 million persons were age 85 or older, and approximately 1.4 million over 90.  The expectation is that by 2010 people over age 85 will increase by another 50 percent, to close to 6 million by the end of this decade.

Returning now to the question of dementia—this from the American Psychiatric Association—15 percent of older Americans presently suffer from some form of dementia which is characterized by confusion, memory loss and disorientation.  And of that number, an estimated 60 percent suffers specifically from Alzheimer's disease.  Alzheimer's disease is regarded as the fourth leading cause of death in America, and roughly 1 million people over 65 have severe Alzheimer's disease, and another 3 million mildly or moderately affected.

I think that's probably enough, just to sort of put this problem demographically on the map.  But the demographics of this matter are not the only thing that interests us, because the individual stories all present their own unique and perplexing and difficult questions.  To be sure, we have to think about things, like who will pay for Medicare, will there be enough caregivers and caretakers.  But on a more intimate level, there are questions about balancing care for one's children and care for one's parent—a problem many of us have already faced—or living through long periods of life with mental faculty intact and the body in ruins, or with the body intact and mental faculties fading.

In short, to think about aging in today's America is to think about the dilemmas of our success; that many of these new problems have been created by making life longer, fuller and healthier, and they are perhaps not problems that we can solve, but rather dilemmas at best confront and only partially ameliorate.

Finally, so that no one is confused about where we are in our own explorations of this topic, this is a huge subject and our exploration of it could take many forms and head in many different directions.  It's clearly a subject of great social importance and ethical significance, and we would like to begin by trying to introduce some of the key questions—both experiential and personal and social, legal and political.

To help us in getting started on this project, I would like to say that we are most fortunate to have our former Council member Bill May, who has agreed to serve as special consultant to the Council and advisor on this project.  His own work in this area is very rich, indeed.

We will need, depending upon which way we go, presentations from those with special expertise on the social, economic and demographic dimensions as well as people in psychology and the people who work in the area of aging, and to draw on the wisdom of our own aging Council members who have reflected on these subjects for many years.

The population of those over 65 on this Council has increased since our last meeting.  One of us speaking has joined the new class, happily.

Our aim today is, in fact, to get at these larger questions and to do so in two parts.  First, to begin really on the personal and existential side to think about the meaning of dementia for the idea of the human person, and its bearing on how it is that we should regard people in those conditions.  Am I the same person as my mental faculties fade and as I no longer remember families and loved ones?  Can I choose ahead of time what will be in my best interests, if one day I suffer dementia?  Can the fully me of 65 speak for the demented me of 85?  And how should the families and the caretakers of those suffering from dementia regard their loved ones, especially when their loved ones seem happy in their condition and yet so different from the mother or the father or the spouse that we once knew?

Those, I think, are recognizable questions.  These are not abstract and remote questions.  And to get us started on this discussion,  I would like to keep the policy questions for the second session where Rebecca will take the lead, and talk about advance directives and thinking about that whole practice.  But Gil has started us in the domain of what one could still call the search for a richer bioethics by causing us to pause on the whole notion of the demented person, and how to think about the question of identity and personhood through time as these powers fade.

And in a way, he's asking us the question:  does it really make sense to treat the demented person differently than one treats a human being at any other time?  And, in fact, raises the question of whether the demented person—or especially the demented person, understood as having somehow lost personhood -is a coherent and morally appropriate notion.

At the risk of starting with the largest question first and not getting anywhere, I'm going to put it out there and see and try to hold people to the conversation for a while, rather than go in a variety of different directions.

How do we think about a person whose powers have started to decline?  In fact, a person with moderate Alzheimer's?  How should we really begin to think about who it is that we have there?  And I'm sure we have a lot of experience to draw on.

Rebecca, please?

PROFESSOR DRESSER:  Here's something to reflect on.  This was an article in the Times week before last by a woman who was 32 when her husband got dementia and Alzheimer's.  He was in his 40s.  And she's talking about caring for him.  And she said "I tried to be with him wherever he was. People talked about how sad the situation was.  I said 'This is a new person.  Come on over and get to know him.'"

So, what do you think of that?

CHAIRMAN KASS:  Jim Wilson?

PROFESSOR WILSON:  I don't have any way of clarifying the question you've asked, other than to offer the following cautionary remark.  I am struck by the extent to which people who have a formed loving relationship with another person find that that loving relationship endures despite horrible things.  This happens at the beginning of life with a child that's born with some crippling defects.  And it is striking to me that in an era that is usually described as practical and utilitarian, the vast majority of parents go to great lengths to care for it.

And I'm also struck in our practical and utilitarian age that people whose husband or wife or uncle or grandparent suffers dementia, how much affection is devoted to their caring.

I only offer these remarks so that we begin with an understanding that, insofar as I can tell, people do not judge these individuals simply as failed persons or even, in some meaningless sense, new persons.  They judge them as continuations of persons with whom they have a powerful attachment.

CHAIRMAN KASS:  Gil Meilaender?

PROFESSOR MEILAENDER:   I think that's true, what Jim just said experientially.  The interesting and puzzling question it raises then, though, is why?  If all or most, at least, of the characteristics that made them the person one interacted with for years don't seem present any longer, on what basis do we do it?  That to me is the question worth puzzling over.  I don't disagree—and indeed I applaud—what Jim described.  But it's not always easy to figure out why we do that.  And to the degree that we could figure it out, we'd have some understanding of what we really think is central to the human being and to continuity of the person.

CHAIRMAN KASS:  Jim, please.

PROFESSOR WILSON:  Gil, I think one important element, though not the only one, is sheer memory.  An attachment is formed and you become attached to that person and the memory makes that attachment grow and sustain itself.  And if the person who once formed the memory begins to change somehow their behavior, the memory doesn't evaporate or at least doesn't evaporate very quickly.  That is, no doubt, not a complete answer, but it's a part of the answer.

PROFESSOR MEILAENDER:  I'm sure it is, but it has to have something to do with the body, it seems to me, as well.  I mean, sheer bodily continuity has to be involved in this, otherwise I can't make sense out of the way many of us, at least, do think about it.

CHAIRMAN KASS:  Diana?

DR. SCHAUB:  Don't people also do it out of a sense of obligation?  Don't people continue to care for loved ones, in part, out of a sense of obligation and that they regard themselves, the person doing the caring, as a willing and promising being, so that—I mean, that it may go back to our own sense of ourselves as the caregivers, as individuals with will.  If you've made a promise for better or worse, then you hold to that promise, even when the person you made the promise to is no longer a person capable of promising.

CHAIRMAN KASS:  Do you want to respond, Gil?  I mean, I don't want to keep you on the griddle.  I think your continuing answers will help clarify and enrich, I think, the character of the questions.

PROFESSOR MEILAENDER:  I'm sure you're right, that it has to do not only with characteristics in the person loved and cared for, but in what, in a certain sense, one brings along with one's self to the caring relationship.  But there might be a point at which—again, I don't actually understand.  I don't believe this.  But there might be a point at which one would think that it just didn't make sense any longer, you see.  That the one to whom you had made this commitment wasn't there to be cared for any longer.  And so, again, I think it's important and sort of puzzling to figure out why.  You don't want to think that this is an irrational commitment that you have.  That's all.

CHAIRMAN KASS:  Diana, you want to respond quickly?

DR. SCHAUB:  Well, yes.  It was just actually just something that I was struck by in reading these various pieces, both your distinction between will on the one hand and sort of body and time on the other, and Dworkin's separation between critical interests and experiential interest.  It seemed to me there was a certain similarity between those. 

And then it also struck me that in so many of these stories and just in things that I've read also, it seems often to be the partner, the wife or husband, who is in favor of going with the advance directive or cutting off certain kinds of medical care.  And it's the mother or the parents or the sister who is in favor of doing all things possible.  And that seemed to me to sort of accord with these two ways of conceiving of the human being, that it makes sense that the spouse looks on the partner as a person with will; that's what brought them together, the promises they made to one another.  And when that is no longer possible, that person that they knew isn't there, there may be a certain point, yes, at which the spouse says:  this is it.

In other words, that they are sort of natural spokesman for these two different positions, and that mothers, you know, they're used to regarding their children as willful beings whose wills are to be overridden.  And so an advance directive, you know, has no binding force for them.  It's just overridden in the best interest of the person as body.  I mean, that's how the person came to know the child.

CHAIRMAN KASS:  The mother's connection to the child being primarily generative to begin with?  Yes.

PROFESSOR DRESSER:  Yes.  And siding with those.

CHAIRMAN KASS:  Still, let's keep this same conversation going just for a bit.

PROFESSOR WILSON:  Diana, you made this observation about the differences in continuing attachment between the spouse on the one hand and mothers and sisters on the other hand.  I hate to interject an awkward social science puzzle in this, but are you controlling here for the level of the daily care?  If the spouse is caring for them daily and the mother and children see them episodically, this could explain these differences.  I'm not asserting that's the case.  I'm just wondering whether daily proximity helps explain this phenomenon?

DR. SCHAUB:  Yes, sure.  There may be disproportionate burdens.  Yes.

DR. FOSTER:  Most of the time when you've got true Alzheimer's disease, there's no mother or father around for it.  I doubt very seriously that this is Alzheimer's that Rebecca talked about.  Alzheimer's disease is a late disease, unless you have the early form in families.  Unless this was a family, that's almost ridiculous to think that this is Alzheimer's at 42 disease.  Maybe a prion disease or something like that that gives you dementia.  But, by and large, there are not mothers and fathers around, because this is a disease that begins late, normally.

CHAIRMAN KASS:  This could be a young wife of an old man.

DR. KRAUTHAMMER:  But we could extrapolate from other—

CHAIRMAN KASS:  He was in his 40s.

DR. KRAUTHAMMER:  Oh, he was in his 40s.  I'm sorry.

PROFESSOR DRESSER:  Well, there are these families with genes who get it early.  And I don't know—

DR. FOSTER:  Yes, but even in familial diseases, it's very early to—I mean that's very early.  It would have to be—you'd have to have a family history here.

DR. KRAUTHAMMER:  But even if this doesn't happen in Alzheimer's, there are a lot of other instances of disabling or sort of depersonalizing illnesses like severe psychiatric illness which occur earlier in life or—I think Diana's point is extremely acute.  It's the parents who stay around the longest.  You get early schizophrenics who are depersonalized in a sense, I mean almost—

DR. FOSTER:  Well, we're technically talking about, Charles, medically technically talking about dementia, which is not in the ordinary medical usage the same thing as a psychiatric illness.

DR. KRAUTHAMMER:  No.  But I see dementia as a subset here of situations in which the old person has disappeared.  It's the most common, it's the most sort of socially urgent because of the aging population.  But if you get a 22 year old who becomes schizophrenic, you have lost that child, if it's a severe psychosis. 

In fact, I think dementia, as sort of phenonomenologically, as an intermediate case.  Because in dementia there's a kind of passive loss of the person, whereas in a paranoid psychosis that person can become your enemy.  I mean, it's even more difficult psychologically to handle the change of person which occurs. 

So I see these as sort of very similar cases.  It is the loss of the older person.  And I think Diana's observation is extremely acute, because you see that in the population of younger people in which this happens; it's the biologically attached—the ones whose memory perhaps is the oldest and the longest—who stick around, and it is the spouses and the girlfriends and the friends who disappear.  And so I think there really is a very strong connection here.

And I think Jim asked a very interesting question:  Why do people stick around?  My question is:  Why do people leave?  And understanding why that they leave, I think, is going to be the socially important one, because when they leave, society steps in, or no one steps in.

And I would just add one other point, which is—in asking what are the conditions that make people want to stay and care—I think the societal culture is extremely important.  I think—I would guess that in Holland people stay around less long, and they're more inclined to kill that person and get rid of them, than in America.  And I don't think that the Dutch people are inherently less caring than Americans are.  I think you get taught by law and custom how to look at and treat people who have, say, left you psychologically.  And if you have a society in which it becomes a regular practice to do away with them, I think you change how people look at how they ought to do.

So, again, I'd return to the point Diana made, that people have a sense of obligation.  That can be eroded by societal norms and societal laws as well.

PROFESSOR WILSON:  I just wanted to drop in a little fact on the point you just made.  A few years ago a study was done in Sweden and the United States, asking a random sample in each population:  who do you think should have primary responsibility for the care of your parents?  In the United States, 65 percent said the family.  In Sweden, 11 percent said the family.  And Sweden is Netherlands squared.

DR. KRAUTHAMMER:  That's the difference between a social scientist and a columnist.  I made it up, he gave us the evidence.

DR. ROWLEY:  But on this same topic there must be data as to how many—well, I'm not sure exactly how to frame the question.  But there must be data on how many individuals in The Netherlands actually do choose, say, assisted suicide.  My impression was that it was an extraordinarily small proportion, but there certainly are data on that, which I just don't have.  Rebecca may.

PROFESSOR DRESSER:  One of the things that's difficult here, it's hard to study that.  Say in The Netherlands, part of the law is that the coroner is supposed to go to the home where the patient has died and verify that all the criteria were met.  But doctors have said in surveys, only 50 percent of them call the coroner.  So it's hard to know exactly what the practice is.

But I've read and seen claims that The Netherlands actually thinks we are rather barbaric in how liberal we are regarding foregoing life-sustaining treatment, and that nursing homes are very conservative about allowing people to die, much less actively hastening death.

So I think it may be a little more complicated than that.

CHAIRMAN KASS:  Excuse me. Thank you.

I would like to sort of shepherd us to stay on the question of identity and attachments.  But Peter's been waiting and—go where you will, and I'll try to keep us on one question at a time.

DR. LAWLER:  All right.  This may be a simple minded way of looking at it, but our legal system is based upon the thought that we're autonomous individuals or essentially will.  But this is psychologically untrue, right?  Because we're also biological dependent beings, and there is something good about dependence.  So our legal theory is, we're autonomous beings and autonomy's good and dependence is bad.  But in fact everything we do everyday, as has been well pointed out, contradicts the psychology of our legal theory.  So it does seem, based upon the evidence and the made-up stuff that was given us, that we can live better with dependence if dependence is personal or biological or specific.  And dependence only becomes grotesque when it's impersonal.

So to the extent that parents or even spouses do the job of caring for the person who is more dependent than the person has ever been before, who has lost all sorts of autonomy, to the extent that, you know, especially parents and families step in, dependence doesn't seem very monstrous.  Dependence only seems monstrous when it's impersonal or institutional.  And it's that point people probably do want to die, insofar as they can think about it.

So, for example, if I were to become in many respects dependent, surrender my mental and physical autonomy to a great degree but to still some extent be happy, if I were at home with my wife or my parents—assume they were younger than they really are—this would not seem so bad.  If I were stuck in a nursing home and were impersonally dependent, that is, have the impersonality of autonomy with dependence, now this is what is terrible.  When dependence is personal, it's not so bad. 

Autonomy in its very nature is a rather impersonal thing.  You know, I'm a person, I'm an equal person with everyone else.  I have a will like everyone else has will.  So the really grotesque thing is impersonal dependence.

CHAIRMAN KASS:  Sorry.  Gil?

PROFESSOR MEILAENDER:  Yes.  I just wanted to make a short comment, coming back to what Charles said and seconding it in a way, that we're talking about dementia because we decided to think about aging in general, and it's obvious.  But the larger question at work here is, it seems to me, the one Charles identified; what constitutes the person over time or alternatively, when is it coherent to think about a time when you wouldn't have the same person because of some drastic sort of change?  And similar questions do arise, it seems to me, in other kinds of circumstances.

So I don't think there's anything wrong about seeing that common concept at work, and to think about it in any of those instances may help us clarify what we think about the question of identity in the case of dementia.

CHAIRMAN KASS:  Alfonso, go ahead, please.

DR. GÓMEZ-LOBO:  This is perhaps a very modest effort to answer Gil's basic question.  And if my perception is correct, of course there have been various competing theories about the constitution of human beings throughout history.  But simplifying a bit, one could say that today there are two basic outlooks which are sort of out there.  The one that's become a favorite, I would say, is the one that sees personal identity as centered around the so-called higher faculties.  I mean, there's a lot of literature around this.  And this generates a kind of dualism, because people who hold this position are really forced to say, well there is a body, there is human beingness, but there's no personhood.  And then, of course, personhood comes in.

In fact, I was reading a paper the other day that spoke about the unoccupied body before the arrival of personhood, which was an interesting metaphor. 

Now, of course, any theory that accepts those basic assumptions is going to say, well once the person is gone in this sense, something else is left there but the person's no longer there.

Now the other way of viewing human beings, and I think that Peter was pointing to this, is the one that holds that we are indeed basically animals.  That we are living organisms endowed with certain properties, with certain capacities that we may sometimes exercise with great success, sometimes with less success.  And that if we lose for some reason the capacity to exercise those powers, those higher powers, that does not mean that we have ceased to be. In other words, the personal identity is really the identity, the bodily identity through time. 

And it seems to me that if we keep clear in our minds those two paradigm positions, we're going to understand a lot of the discussions that take place today at the ethical level, because the ethical positions depend a lot of what you consider the person or the human being to be.

CHAIRMAN KASS:  Could I ask a question then of you, Alfonso, or of Gil, to short of sharpen this?  Knowing that I think you're both friendly—and Gil is explicitly, I think, friendly—to the idea of personhood not as something, as a possession that our body has, but in this nice formulation a person is simply that someone who has a history through time, an embodied life through time.  Do you think it makes absolutely no sense to say if someone that you have known a long time—this is no longer the same person, that the person I know is not here?  Am I being loose with my speech and if I thought about it, I'd never say such a thing?  Or, aren't there really occasions where he's not here anymore? 

DR. KRAUTHAMMER:  Of course there are.  I'm sorry, go ahead.

DR. GÓMEZ-LOBO:  Yes.  Well, again, it may be a manner of speaking.  I can say of my children that they're no longer the same person they were when they were these terrible teenagers, and now they've matured, etcetera.  So it depends on how you mean it.

But it seems to me quite clear that if you go deep down and ask yourself, is this another person that's here after, say, an inception of dementia, I would have to say, no.  It's the same person, it is my mother, but she is going through a phase in her life of great diminution of her powers.  But I cannot say it's another person.

CHAIRMAN KASS:  Gil might want to get on this, too.  And Charles, I think, has something to add. But let me push a little harder.

In an earlier age, people would speak about people being possessed by demons.  In other words, to try to give an explanation of some kind of radical transformation, we now have psychiatric diagnoses for some of these same kinds of conditions, and Charles has already introduced this.  And at the end of life where the body still is there and one could still embrace the person one has embraced one's entire life.  I don't want to demean that.  But there really is a kind of puzzle, where is she.  If speech is gone, the capacity to return affection is gone, it's not just that the will is gone, but all of those things.  Are we just being—?

Well, if we think deeply and we sort of ponder the philosophical implications of it, you might induce us to be more modest.  But isn't the existential experience that this is no longer who this was, in any of those cases? 

DR. GÓMEZ-LOBO:  Not for me, if I may resort to my own experience.  You know, I've had relatives in that condition and I would say it's the same person but really, really severely impeded.  And, of course, I cannot relate to this person as I used to, etcetera.  But to go and say no, there's the discontinuity of identity through time, I think that's unsustainable.

CHAIRMAN KASS:  Gil and then Charles and Peter and Michael.

PROFESSOR MEILAENDER:  Of course it's understandable how one might say or think something like that, under various circumstances.  To the degree that I found myself thinking that, though, I hope that I would instruct myself to be sure to think carefully about it since, after all, it seems to me that a human life precisely is the history of that organism over time, and that life begins in a very rudimentary state of development, with relatively few of the capacities in expression that we prize most and think of ourselves as exhibiting at the zenith of life, which we all think we're more or less at.  And the trajectory of life eventually returns to circumstances in which many of those capacities are no longer so clearly expressed.

So, of course, we understand and we understand that that kind of expression gives expression to a certain feeling of sadness and pathos and so forth.  But I don't think I either would think that if I were speaking carefully I would suppose that that person wasn't there any longer.

CHAIRMAN KASS:  Charles? 

DR. KRAUTHAMMER:  I think your use of the word careful is what's important here. 

I think maybe we can resolve the dilemma by saying that we experience the person as having disappeared, but we almost dare not say it, or we dare not say it as a form of public policy, because the implications might be that that person no longer deserves to be treated as a human person.

I mean, when you ask, can we talk about it in these terms, I think many of us, perhaps not Alfonso, but I can understand how many people would experience the loss of a person.

I remember seeing relatives of my schizophrenic patients who had that acute sense of having lost their child.  In fact, it was—as I indicated earlier, it was worse.  They had not only lost their child, but a new person had arisen who was now unrecognizable and very much antagonistic.  So that's how they experienced it.

Now, we wouldn't dare translate that into policy, of saying they no longer was a person or you had to change the name on the driver's license, which is I think what we're talking about here, in how to treat the elderly; do we treat them as a person.  So we think we might agree they possess personhood, but we experience them as having perhaps lost it, or we having lost the person we knew.  Maybe that's the distinction we make, between experiential and sort of legal and moral.

PROFESSOR MEILAENDER:  Just really quickly.  What makes it so terrible—that one's child has become one's enemy there—is precisely that it is one's child and who is still one's child.  Enemies are not a good thing, but we have them and we deal with them.  But to have one's child, one who's still one's child, become one's enemy.  So the continuity has to be there also, along with the extraordinary transformation, to make it such a terrible occurrence.

DR. KRAUTHAMMER:  Well, that continuity is what keeps them in the game, otherwise they'd leave. No, I understand that.  But I'm saying the experience is, the old child is gone, is no longer.  Where did he go, is what they ask.

CHAIRMAN KASS:  But Gil's point, Charles, Gil's point is that you want to distinguish what might be true from what would be unedifying to say.  And Gil is suggesting that the fact that one still regards this as one's child is part of the truth of the matter.  The claim is the child is not utterly gone even when he's turned into the enemy.

DR. KRAUTHAMMER:  And I would say that that second truth is what informs us; that as a societal and legal issue, that's the important element we need to hang onto.  It still is the child, no matter how you might experience it otherwise.

CHAIRMAN KASS:  Yes.  Peter and then Michael.

DR. LAWLER:  So the answer to your question is yes and no, right?  It's in some ways the same person and in some ways not the person.

So if we try to push our knowledge of personhood further than we reasonably can, we want it to be yes or no, right?  We want to say in certain respects the person you knew as a rational being and communicated with and shared joys and responsibilities with is gone for now, at least.  But on the other hand, there is a real experience you have with a living being which is not gone. 

And so it's almost as if we don't understand personhood that well when we identify persons as minds or willful mental beings the person is gone.  If we understand persons as bodies, the person is still completely there.  But in fact neither understanding of identity seems to exhaust what we really know.  For that reason public policy should be based on the yes, because if you would say the person is no longer there, we know that's not completely true.  And because we know that's not completely true, we have to—insofar as we want to give definition to the word personhood, which I don't really want to particularly— we have to act on the basis of something is still there even if not everything.  It's still our child and all that.  But we don't want to lose our intellectual humility on this.  There is something mysterious about this precisely because we're not minds; we're not bodies.  We're some third thing that can't be reduced to either mind or body.

CHAIRMAN KASS:  Michael Sandel and then Bill May.

PROFESSOR SANDEL:  I wanted to push Charles in his reaction to Gil's strong thesis.  Gil's strong thesis is about the body.  Gil has a thing about the body, we've heard it before, and I think it's worth exploring here.

And here it is explicit that personal identity is not defined by memory, but by the body.  So the issue in the case of the schizophrenic child, the parents still—well, they do and they don't regard this child as the child they knew.  But insofar as they do and insofar as they hang in there and see that this is the same person, is it because of the bodily continuity, or is it because of some mix of memory, recognition and life story?

Do you accept Gil's fundamental thesis that the continuity of personal identity is defined by the body, the continuity of the body?

DR. KRAUTHAMMER:  I would say both. I see no reason not to say both. 

What trap have I walked into, Michael?  I don't see it.

No, I mean is there a different answer?

PROFESSOR SANDEL:  Well it's hard to make sense of the part you were emphasizing where people say it's not the same person I knew.  That's merely a metaphor, a manner of speaking, if you think that the identity, the continuity of identity is vouchsafed by the continuity of the body.  The rest is metaphor then.

DR. KRAUTHAMMER:  But I don't understand how you've weakened it by calling it a metaphor.  The experience is very real however metaphorically expressed. The person you knew, you raised for 22 years, is totally gone and replaced by a different being. You know it's your child because of the body, and you have your experiences, which makes the pain.  But that's the psychological reality.

PROFESSOR MEILAENDER:  It's not merely metaphor.  I mean what's lost or changed are some of the most characteristic human capacities that all of us treasure and value.  So when those are lost or diminished, something very important has happened.  And so I wouldn't call it merely metaphor. I would simply say that there's no life story without the bodily continuity as well.

PROFESSOR SANDEL:  Would you say if someone underwent a religious conversion—if someone who committed a crime and then underwent a religious conversion, that for purposes—whether the legal and moral responsibility is detachable from the question of the  experiential.  Now, here you might say the person who has been transformed is a different person, a different person from the depraved criminal I used to be.  I've undergone a religious conversion.

Now, might that not make a difference to the way we would deal with that person, even legally, certainly the way we would judge them morally in virtue of recognizing a discontinuity of a certain kind of personal identity that would have a practical import?

PROFESSOR MEILAENDER:  I wouldn't say they would become a different person even undergoing a religious conversion, a matter about which I have given some thought.  I would say he had been transformed in certain ways. I would say there was both continuity and discontinuity in the history of that person.  But if it was simply a new person, I wouldn't know what the significance of a religious conversion was.  Just the old person was gone and there was now a new person. It's only significant precisely because this person has been transformed.

CHAIRMAN KASS:  Bill May.

DR. MAY:  The discussion of the marital relationship which was mentioned earlier, the anguish that it's not the person I married, there are two directions in which that can go, of course.  It's not the person I married; I'm out of here.  The vow has reached its limit because there's no longer this other there, that an exchange occurred.  But I've seen situations where it's been very important to say it's not the person I married in order to free them from the demand that is there built into the relationship that it should be John and it isn't.  And so that there's a kind of necessity of a kind of burial in order to be free, even to relate and to cope with it.

Now then the question for the person is that it's not simply the change in their identity, but the change that it forces upon me in that terrific decision, if you stick with it, that your relationship gets radically redefined.

So there's the problem on the one hand to keep from haunting that other out there with expectations that were legitimate in one setting but no longer are legitimate. He's no longer himself.  And you need to accept that and not bury the person, but bury that terrific expectation that is built there in all the complexity of a marital relationship. It's no longer John but now my relationship has to undergo a terrific change. 

And I've seen older men dealing with a spouse in Alzheimer's where now the question is to what degree am I willing to undergo this huge redefinition of myself that is imposed upon me by that event.

CHAIRMAN KASS:  Alfonso, please.

DR. GÓMEZ-LOBO:  I'm not sure I understood the position you were sketching, Bill. But what does it do to marital vows?  I mean, marital vows have this wonderful phrase, you know "for richer, for poorer, in good health or ill health."  Now, if my spouse undergoes this illness and I say, well, it's another person, sorry, I would find that rather questionable.  Isn't it precisely  because the person has lost these powers that I would say the seriousness of the vows kicks in in a very special way?

I hope you're not suggesting the contrary.

DR. MAY:  Well, this raises another dimension of Gil's essay.  An awful lot is packed into three or four pages.

But if you argue, as you do early, against the essay that if we think about advance directive as a kind of willful act, what about the willful—attempting to shape a future when in fact that person is to undergo changes later on.  And maybe what looks awful early on, later on is not going to be so awful because here you got this person happily engaged in a much lower level of activity which previously they would have thought appalling.  Well, if you go down that route early, what about the willful element in the decision to marry in the vow?  I mean, there's another decision to shape the future.  advance directive is one kind of decision to shape the future.  The marriage vow is another.  And to what degree is this mere willfulness, which is part of what you insist on in order to prepare the way for a differing understanding of how seriously we ought to take that advance directive?

CHAIRMAN KASS:  Gil, do you want to respond on this marriage vow matter?  We're going to have two different understandings of this question, I hope.

PROFESSOR MEILAENDER: It's interesting, Bill, because we were actually talking about it at dinner last night.  The same question sort of spontaneously bubbled up.

I think that the difference is—I mean, it's a very interesting question and a puzzling one in some ways. But I think the difference is that the promise in marriage is not precisely an attempt to shape or control the future. It's giving one's self over to something considerably beyond one's control.  In that sense it's quite different from the attempt to take a particular point in time and make it determinative for my condition for the rest of my life.  What you do in the marriage promise is give yourself over to a whole range of indeterminate circumstances that you can do nothing about.  So in that sense I think they're quite different in the attitude that they do or do not display with respect to the attempt to willfully control the future.

CHAIRMAN KASS: To put another way it's a willful promise to surrender a certain amount of willfulness; that is to say, come what may, is really the extent.

Bill, do you want—after Michael, then please.  And Peter, too.

PROFESSOR SANDEL:  Well, I think that there is a problem here that Bill has pointed out about willfulness as the source of obligations.  And I don't think you can slip out of it that easily, Gil.

I think that the problem of resting or tying obligations of these kinds to an act will, that difficulty does arise in both the case of the advance directive and in the case that sees the obligations to one's spouse as flowing from an act of will or a vow.  I think that's the mistake in the case of Alfonso's example.

The obligation that persists to one's spouse or mate even when that person undergoes the loss of memory, for example, I wouldn't say that that obligation flows from an act of will that was the marriage vow. It flows from an obligation one has to one's spouse with one whom has—and the test of that is that I don't think Alfonso would say that the obligation would be transformed in the case of relations that weren't based on any vow; for example, obligations to one's parents where there was no vow.

The obligations to one's parents or to one's children can't be traced to a vow.  And yet they are as weighty and they persist in the face of transformations in identity in just the same way as the obligations to one's spouse would persist.  So it can't be that the act of will is somehow the source of the obligation, primarily because I'm sure you would recognize that those obligations of care and concern apply in these other relations where there was no vow or act of will.

DR. GÓMEZ-LOBO:  Yes.  But very quickly.  Very quickly.

We have all sorts of obligations. Some are contractual, some are natural.

CHAIRMAN KASS:  Peter.

DR. LAWLER:  Considering this, I'm reminded of the fact that my wife often says to me, and not in a good way, you're not the person I married.  But she doesn't leave, right?  And so it seems to me the extreme case you sketched out so well, and I really thought this was your point when you sketched out, the extreme case where you are in certain ways no longer the person I married except in the bodily way, this reveals to you kind of what marriage is all about; a deep sense of the promise you actually made which I perfectly agree is not mainly an act of will.  I mean, we are abstracting in a monstrously inhuman way here from love, which is what is much more continuous over time than the will can ever be, right?  We want to master the future through will, but it is quite impossible.  So insofar as there is continuity, it's mainly love, right? 

But the problem is our law understands marriage in terms of will. It's a contract you can break.  Because I've heard many a person say, "why did you get divorced?" "Because it's just not the person I married."

And so I agree that we have monstrous deformation of the understanding of the thing here when we reduce it to will.  But our law does kind of reduce it to will.  There's a problem.

CHAIRMAN KASS:  Diana?

DR. SCHAUB:  Well, now I have about four different responses to make to different comments.

On the one, your answer may have handled it.  Some are natural given relations and others are chosen relations.  And those chosen relations are signified by the vow or solidified by the vow.

But I was baffled by what you just said, Peter. If you define the spousal obligation by love, if the love disappears, then the obligation disappears. It does seem to me it is the promise which is binding even if the love changes.

DR. LAWLER:  This may even be the deficiency in the law.  We don't hold people to this promise really under the law. You can wilfully split anytime you want, to only slightly simplify the character of our law. So the promise is part of it, right, and certainly you have a responsibility rooted in the will.  But insofar as this caregiving in this extreme case take place, the will simply cannot be enough or even the main thing.  I actually have experience in this.

So I agree that every time we speak about these things, we speak abstractly, and so in pushing love I abstracted from the place of the will to some extent.  But on the other hand, if it's simply a matter of will, simply a matter of fulfilling the promise in the abstract without any human connection, it won't be a true or beneficial thing for you.

CHAIRMAN KASS:  Briefly respond?

DR. SCHAUB:  Yes.  Actually this is not a response to Peter but another hypothetical that I wanted to give. We have been focusing on how do related people react to changes in identity or possible loss of identity. What about the person himself?  If you were you to get a diagnosis of Alzheimer's, what would your reaction to that be and what would it indicate about your own sense of your own identity?  Wouldn't you be fearful that you were losing yourself, and that if you could be translated promptly from a condition of competence to the condition of incompetence and complete dependence, that might not be so horrifying.  What must be most horrifying is that that middle position where you are aware of your own degeneration and aware of what is coming.  I mean, I just throw it out to see if that helps us to think about identity.

CHAIRMAN KASS: Does someone want to join to this particular thing?  Rebecca, please.

PROFESSOR DRESSER: Derek Parfit is the modern proponent of psychological theory of personal identity.  And part of his theory, I think, would be helpful to this discussion in that he talks about personal identity as not all or nothing.  It's a matter of degree.  And so some of the things we've been struggling with concern—I mean, I think we're trying to draw lines, is the same person still there, is the same person not still there. But in a lot of these situations, I think the experiential sense is some of the person is still there and some of the person is different.  And so it can be confusing to figure out our obligations, our obligations that we feel may not be the same as the ones we felt at one point, but we still may feel some obligations to that individual to the extent that it seems to be the same person.  And, also, even if it seems to be a somewhat different person in some ways, we may feel that we owe obligations to that vulnerable person who's dependent.  It's still a person, even though the individual's not fully the same person.

CHAIRMAN KASS:  Gil?

PROFESSOR MEILAENDER:  I don't want to leave the marriage issue quite yet.

Two comments.  One, certainly on the one hand I take it, Michael, that you wouldn't want to deny the force of what Diana and Alfonso said; that you do enter it through an act of will, through a promise of some sort.  But there's a sense in which it's not just that, of course.  It's implicitly renewed every day. There's a history that it has that's the history of the bodily life together of these two people so that it's not just an act of will. It has a history. And probably if two people made that promise and an hour later we're in a car accident where one of them lost all the higher capacities, we'd be more puzzled about what we wanted to say about that than after 40 years.

So, I mean, the history makes an enormous difference. It doesn't deny the fact that the promise is also important.

And that leads me to the more general point that Peter said much earlier the human being is some sort of third thing and the person, the human person is in some way the intersection of body and mind or spirit or whatever we want to call it. And there's always going to be something that puzzles us in moments when the intersection doesn't seem to be there any longer.  I mean, we could at least hypothesize weird circumstances in which it seemed to be all mind and no body, and we'd be puzzled then, too, about what we wanted to say.

So, it's not surprising that those circumstances are puzzling.  It's simply, I think, mistaken to try to solve them in ways that suggest that when something is—when some capacity or other is gone, that we have somehow lost the person at that point. It's more puzzling than that.

CHAIRMAN KASS:  Michael.

PROFESSOR SANDEL:  Well, I agree for the most part with what Gil has just said.  But I think what that points up and acknowledges is that the act of will is not a necessary condition of an obligation of care of the kind we normally regard ourselves as having toward spouses or children or our parents. It's not a necessary condition.  And it may not even be a sufficient condition of the kind of obligation we have in those cases as is brought out by Gil's example of people who exchange vows but have no history together in the hypothetical of the car accident.  There would be some obligation, but it would not have the character or the kind or the weight of the obligation that would obtain in the case of the 40 year life story, nor would it have the character and the quality and the weight of an obligation we might have to loved ones where who are not spouses and where there had been no exchange of vows.  So all of that supports the idea that the will is a very frail instrument on which to hang the kinds of obligations of care that we're talking about here.

PROFESSOR MEILAENDER: Just a comment.  I take it, though, that actually that reinforces the general point that I've been trying to make.

CHAIRMAN KASS:  Exactly.

PROFESSOR MEILAENDER:  The fact that it's precisely the history of the bodily organism that is crucial here.

PROFESSOR SANDEL:  Well, sort of.  The history, yes, but the bodily organism, no.  Because what has a history is not a bodily organism, but a storytelling being, a being capable of narrative and recognition and self-understanding.  And so that's why I quarrel, maybe cavil with you, Gil, on tying personal identity to the body.

Now when you add the storytelling or the narrative dimension, or the dimension of memory and the capacity for recognition of one's life story, the aspiration to render a whole, then perhaps there isn't such a difference.  But to go back to the religious conversion case, you're right, of course. That part of the identity of the convert is similar and different, and it's important to the identity of the convert that he or she once had this other set of religious convictions.  That's true.  But the issue, if there is an issue here between us, is not that. It's what supplies or accounts for the continuity in the life story.

I would be inclined to say that the continuity there that confers the identity of the convert as a convert, surely there's a continuity, you're right.  But that's not the physical embodiment that gives that principle of continuity.  It's that the person, his or her friends, could tell a story about the transition and the transformation from one set of convictions that would make sense to the participant.  That's the test, so that's why I don't think you want or should want the body to be the marker of identity.

CHAIRMAN KASS: Could I?  I think this may be partly a misunderstanding of what Gil is saying for which Gil's way of saying it is perhaps partly responsible.

I don't think he's identifying the human person with the body as an anatomist would somehow understand the body.

PROFESSOR SANDEL:  I'm not sure about that, because I have a long memory and I remember when Gil was saying that personal identity was called into question with a kidney transplant.  That's why I want to see just how bodily—

PROFESSOR MEILAENDER:  You locate that memory for me in data if you would.

CHAIRMAN KASS:  This is important. The question is: What is it that has a history and has a life that can be narrated?  Surely it is not simply the narrative capacity alone which does not exist save as embodied.  I mean, you seem to be—if you're accusing Gil of being, strangely, a materialist, which those of us who have listened to him around this room couldn't possibly imagine that that would be accurate.  You seem to be in danger of being a kind of idealist who thinks that the narrative capacity has an existence separate from this thing to which is it mysteriously related.  And I think what Gil and Peter and, I think, Diana and I think also Bill, implicitly, and Alfonso are saying is that the attempt somehow to locate identity in that which can explain itself to itself is only part of the truth of the matter.  And I'm not sure whether you're denying that; or if you are, why you would.

PROFESSOR SANDEL:  Well, if the thing is a physical and empirically instantiated body I would deny that, because the same account and the same dilemmas of identity through time can arise with respect to peoples, nations, communities, religious traditions.  And the same issues of continuity and discontinuity of the identity of a people, let's say, can be posed and that's because, even though you wouldn't identify a people with the physical bodies of the members of the community who comprise a people, you would identify it with the capacity to make sense of a narrative, of a story, of a trajectory through time.

CHAIRMAN KASS:  Well, let me make a sort of point, and this is sort of more personal than I would ordinarily like to be.  Having attended one of my parents, my mother, for 13 years of Alzheimer's disease, at the end of which time she was unfortunately through most of this time in that condition that Diana—not so far gone that she wasn't aware of how, when on the eve of her death I was there and visited and embraced her, was I embracing my mother and only because of a memory?  I mean, you can't answer for me psychologically.  If I said to you I was acknowledging not something that I had remembered, because the fact of the matter is over 13 years I had more or less forgotten a whole part of who she was when she was most herself. And it took great efforts to remove this cloud.  And, nevertheless, at every encounter not only because of memory and partly because of affection and partly because of duty, you know she's still there.  And the embrace I gave her at the end was not all that different from the embrace that I had given her for much of my life.

And I think that's not to somehow reify the person in the body or to make some kind of error, but to acknowledge that each time I'd visit I would recognize her.  This is—

PROFESSOR SANDEL:  Well, recognition, yes. But now the richness of the account is bound up with a certain kind of recognition.  And recognition is not just a bodily form of understanding.  You're giving now a much richer account of a mere bodily continuity.

CHAIRMAN KASS: I think... well, Peter.

DR. LAWLER:  Well, it seems to me that this argument, if that's what it is, is based upon a willful confusion.

Obviously, beings that are only bodies don't have history in a normal sense of the word "history".  If they do have history, it's like natural history; they are imposed upon them from outside.

To have history, you have to have a body that is to be constituted by time, have a definite beginning and an end which a pure mind wouldn't have, presumably.  But you have to be in some sense self-conscious.  So nations only have histories sort of by analogy or something, because the precondition of all history, as Frank points out all the time, is the time-bound character of the individual human being.

And so the question Diana asked was a great question because this being who suddenly finds out he or she has Alzheimer's, that's all of us.  It's just in this case the thing is made more sharply because we all are stuck with inevitable deterioration.  That's part of our history.  That's part of our embodiment.  But it's not part of the embodiment particularly of your dog because your dog is unaware of this problem, right?  If your dog has Alzheimer's, if the vet diagnoses your dog with Alzheimer's, your dog is just as happy that same day. Your dog couldn't care less. Your dog has no awareness of this.

So there has to be some self-consciousness there which, as our scientist pointed out, right, comes from our natural capabilities.  You know, our ability to have language so we can so know the world and know ourselves is an aid.  It's not this mysterious thing hanging above our nature.  As I said, it's a capability of our natures.

But when you talk about human beings, if we talk about them in terms of bodies—the one thing Gil said I had to disagree with, is marriage is not between two bodies nor is it between two minds.  It's between two—I'm going to repeat, two third things.  So just like even human sexuality is not between two minds, obviously, it's also not between two bodies. Because everything human beings do is infused by these things that are part of us that can't be reduced to body.

PROFESSOR GEORGE:  Can I just ask a question of Peter about that because I was puzzled the first time you said it.

You're saying that the human being or marriage is not between two minds or two bodies but some third thing. I find that puzzling, because I can't imagine what the third thing would be.  And it seems implicitly to deny that that third thing is either the body or the mind or some union of body and mind.  It would seem to me that the correct answer to the question would be not that it's a third thing, but that it's the union of body and mind; that people are not minds residing in bodies but they're a union of body and mind or body, mind and spirit and not some third thing would be independent of either of the two things with which we associate ourselves, these two things now considered as a unity.

DR. LAWLER:  Well, the third thing, right, can't be reduced to either of the two component parts. So almost all the experiences I have all day long aren't the experiences of a being with a mind or a being with a body.  And so it's understood correctly—it's okay to say a being with a history, a being who—although I'm a narrative guy by inclination.  But the being with a capability for language by nature is a being who is open to the truth about all things, but not in the way a pure mind would be.  And so to say they were a union of body and mind is not to say that we're an altogether harmonious union of body and mind, but that we're relatively paradoxical beings. 

PROFESSOR GEORGE:  Well—

DR. LAWLER: If I were to say something more, it would point me in a religious direction, which I don't want to go particularly, except to say from the point of view of minds and bodies or these two systems that we tend to reduce things to, most of our experiences are pretty strange and paradoxical, you know.

PROFESSOR GEORGE:  That sounds fine to me. Just to clarify again, you're not suggesting for example that there's an entity of some sort of soul or some other label that is distinct from the body and the mind that is a third thing so that the real person is neither body—

DR. LAWLER:  No.  See, that could be misunderstood. I'm not a materialist, but I'm a strict, if understood properly, a strict naturalist.  The thing we are is a natural being that has mental qualities and physical qualities but the way these things are expressed—the way I do things can't be understood as the way a mind does things or a way a body does things.  So we can't understand human experience abstractly, which is our dominant tendency, actually. 

PROFESSOR GEORGE:  But if I ask you, "Are you your body,?" presumably you would say, "Yes, although there's more than me to that."

DR. LAWLER: Yes.

PROFESSOR GEORGE:  More to me than that.

DR. LAWLER:  That I wouldn't be without my body as far as we can tell by nature.

PROFESSOR GEORGE:  But you're not suggesting—

DR. LAWLER:  Yes, right.

PROFESSOR GEORGE: —that you're some entity residing in your body?  I guess here's the question.  Sorry, Leon to have gone into this, but let's see if we can follow it through.

Some people suppose that we are nonbodily persons who are somehow associated with or reside in or use as an instrument or occupy a nonpersonal body.  On that view, the body is not part of the personal reality of the human being.  It's a subpersonal reality that the human being considered as a center of desire and consciousness inhabits and uses in a kind of an instrumental—

DR. LAWLER:  I couldn't be more opposed to that.

PROFESSOR GEORGE:  More opposed to that?

DR. LAWLER:  Yes.

PROFESSOR GEORGE:  So that you are in favor of the view that the body is not subpersonal, but it's part of the personal reality of the human being?  It's not all there is to the human being, but it's part of the personal reality?

DR. LAWLER:  Well, right.  When Leon asked these probing questions, my answers were always yes and no, right, finally. In a certain sense something is lost, but it seems monstrous to me to say the person is lost.

CHAIRMAN KASS:  Actually, if I could come to Peter's—Peter will tell me if I'm coming to his aid and clarification. He said, if I understood him, he said, look, the attempt to identify the person as body or as mind is an error of philosophical abstraction.  It's the intrusion of theory into—I mean, this is the way we try to sort out these things.

You wanted him to say that he is not without body, but he is something more than a body, and he won't say that.  In other words, it's not as if there's something added to a body.

DR. LAWLER:  Yes. I'm neither a materialist nor an idealist.

PROFESSOR GEORGE:  No.  That I understand. My question really is about the status of the body.  Is the body a subpersonal reality or is it part of the personal reality of the human being?  So that if I have a body but not a functioning mind -I'm not performing the kinds of mental acts characteristic of human beings—am I still a person? Alfonso, you know, has given us a clear yes answer to that and I'm wondered if you'd say the same thing.

DR. LAWLER:  You know, everything in my being opposes clear yes and no answers. But I will say I'm in agreement with you.  To say that being is subpersonal depends upon an abstract and unreal view of what a person is.

DR. KRAUTHAMMER:  He's asking if a person in a coma—I'm sorry.  I mean, the example would be—a person in a permanent coma would be the example of that question.

DR. LAWLER: We can't... it is impossible for us to even reduce, if we think clearly, as you were talking about before, we can't reduce the person in a coma. It would be monstrously abstract to say the person in a coma is mere body, therefore not a person.  That's an abolition of what the—the mystery of what a person is finally.   I say mystery, yes.

CHAIRMAN KASS: Let me make a comment. We're close to the break and maybe, for a change, we should observe the schedule.

There may be people wondering what's going on here this morning, but I hope not.  Insofar as we as a culture are trying to talk about how to respond to the problem of, let us say, demented people or of people similarly reduced for other reasons, it's very easy for a rather casual use of language strengthened in part by our political philosophy that places such a premium on autonomy by certain kinds of tendencies, in fact in the field of bioethics that echo these sorts of things, that in an attempt to somehow solve certain kinds of practical problems we rush in with concepts ill-considered.  And that one of the contributions, if we do go down this road and this area, one of the real contributions I think a group like this can make is indeed to lift up to view some of these very puzzling features of what a human being is, of what a human person is, and not allow the policy questions to be decided thoughtlessly because the terms and notions are either incompletely clear or because the thing being described is so mysterious that it defies easy capture by any kind of attempt to settle this matter once and for all.

This is not, I think as Michael is sometime fond of saying, a graduate seminar at the highest level. It's flattering. I wish it were true.  But that this kind of discussion I think does have some kind of practical bearing when one begins to move into things like advance directives or how one begins to think when in fact one aggregates demented persons as a category and moves them out of their concrete reality where they find themselves and their families in dealing with the medical profession in nursing homes and the like.

So speaking for myself, I thought this was a very rich beginning for what I hope could be a further elaboration and the clarification of this conceptual issue, which really is at the heart of how one will come to think about these more practical questions.

Let's break. And let's come back at 10:15 and we'll be on schedule.

(Whereupon, at 9:58 a.m., a recess until 10:28 a.m.)

SESSION 6: BIOETHICAL ISSUES OF AGING II: THE WISDOM OF ADVANCE DIRECTIVES

CHAIRMAN KASS:  Could we get started, please?

I forgot to mention that I've left at your place this notice on a new exhibit at the Holocaust Museum called Deadly Medicine:  Creating the Master Race, on the eugenic practices of Nazi Germany.  This exhibit will open in April and will be around, I think, when we next meet.  And an inquiry was raised whether members might be interested on the day before the meeting or perhaps at the end of the meeting arranging for some kind of special visit over there.

You don't have to let us know now, but we'll canvass people if they would like to see this. I gather this is really quite impressive. I know someone who works at the museum, and although this is not an immediate problem for us, this is in a way one of the events that helped found the whole modern bioethics concern and I think worthy of our individual attention, if not as a group.

The personal and existential and quasi-philosophical discussion of the first session is now to be followed by a sort of more legal and policy oriented question around the limited issue of the wisdom of advance directives.  And Rebecca has supplied the background materials which include some really quite wonderful things of her own.  And I've asked her if she would be willing to lead off the discussion with some prepared remarks and help frame what we should talk about.

Rebecca, thank you.

PROFESSOR DRESSER:  Thanks, Leon.

Well, I really welcome the opportunity to explore these issues with such a thoughtful and accomplished group. And I'm really looking forward to hearing your ideas.

I think bioethics so often focuses on the speculative, the symbolic, the exotic developments that may have little direct impact on people's lives, but this topic today is very different.  Many, many families face the confusing and difficult situation of deciding about life-extending interventions for older relatives unable to make their own treatment choices.  And many who are not now in that situation really worry that it will happen at some future point, probably many of us.

Besides being a personal and family problem, it's a big and expanding social problem.  There already is a large and soon to be larger population of people affected by dementia. And I think we're really far from being ready to cope with this.

So let me give you some observations on the situation with a focus on treatment choices for dementia patients.

First I want to describe problems with the advance directive or as it's also known, subjective approach to treatment decision making, and then where I think some improvements could be made.

So a bit of background. How did we get to this point where advance directives became the favored approached in treatment decision making? Well, in the '60s and '70s as modern medicine was coming up with all these new technologies, these ways to sustain human life such as respirators, the perception was that doctors were using this technology indiscriminately.  That they didn't have good judgment about how to use this new power.  So people were very afraid about being kept on life support for too long in what they perceived as an undignified state. So this general legal rule emerged which holds that in a contemporaneous treatment situation, a competent person should be able to decide based on her individual values, whether treatment would be worth it.

So then it seemed to follow naturally that if illness or injury makes someone unable to decide, the best alternative would be to decide based on instructions issued while that person could still think about the choice.  So living wills and then advanced treatment directives developed so that people could give these kind of instructions.

Now, the philosophical support for advance directives is generally based on respect for individual autonomy. And this approach, I think, has also been attractive because it seems at least to put the decision in the hands of the patient as opposed to the hands of others, such as the family and the doctor. And this is seen as desirable because it's too easy for families and doctors to subordinate the patient's interests to their own concerns, whether this is conscious or unconscious.  But I think the philosophical and legal support ignores serious obstacles to putting advance directives into practice.

Studies of advance directives point to many practical problems.  First of all, most people don't make advance directives despite many years of effort at education and promotion.  And the directives that are made tend to be quite general.  They often fail to offer very clear guidance to clinicians and families at the bedside.  They tend to be things such as "I don't want extraordinary means if I'm ever imminently dying" or something to that effect.

Now some advance directive documents are more specific and they'll ask what would you want in a particular condition, would you want feeding tubes, respirators, surgeries, all these different things.  But then the concern becomes whether the person completing this kind of specific advance directive has an adequate understanding of these specific treatment decisions that are being made.  And I'll come back to this problem in a second.

Another general problem is that it's not clear that advance directive accurately and effectively communicate a person's wishes.  So, for example, there is this study of dialysis patients. These are competent people dependent on a life-extending treatment. So in this study they asked people to complete advance directives saying what they would want if they got advanced Alzheimer's, I believe it was.  And then they went back to the people and said, "Well how strictly do you want us to follow these?" And it turned out only one-third of the people wanted their directives strictly followed.  One-third said they wanted their families and doctors to have some leeway to override the directive if they thought that would be in their best interests.  And another third said they wanted their families and doctors to completely ignore the advance directive.  So you might say, "Well why would you make one in the first place?"  I don't know.  I guess they were in the study, they had to.

So in any event, this advance directive did not really explain the person's actual treatment preferences.

Another study, and this is a little complicated.  It involved older competent people. And they asked these individuals, "All right, if you became incompetent who would you want to be your decision maker?"  And it was normally a spouse or a son or daughter.  And then they asked these older competent people to fill out a questionnaire on life-sustaining treatment preferences of four different illness situations and six different treatment interventions.  And then they went to these chosen surrogate decision makers, the sons, daughters, and spouses and said, "All right, fill out this questionnaire based on what you think your older relative would put on it."  And there were five groups, one control group and four experimental.

To make a long story short, the relatives who were able to look at an advance directive to try to fill out this questionnaire on life sustaining treatment preferences did no better than the control group that was just filling out the questionnaire based on their familiarity with the older individuals.  So the advance directive did not increase the surrogate's knowledge of what the older person would want if incompetent.  So not very effective.

The third general problem is that people making directives often have a poor understanding of what they are deciding, and so there are many questions here.  First of all, if you're just a healthy person and you're trying to think of all the different things that could happen to you, it's very difficult even for physicians to try to predict that.  So it's just factually complex.

And then another problem is do people completing advance directives imagine what they would want in a future state of dementia when their needs and preferences and interests might be quite different from what they are now? 

Even in competent persons treatment preferences change.  There have been studies where they go back to older people every year and say, "Okay, what do you think now?"  And there is variation.  However, many of these people do not know that their preferences have changed.  Social psychologists have found that we think we're much more consistent than we actually are in our preferences and values.  So people might not change their advance directives even though their preferences have changed.

There are other problems such as some studies where half to two-thirds of the advance directives never make it to the bedside.  They're left in the nursing home or they're at home.  And some evidence that advance directives are not followed at the bedside if the doctors and families don't think that they're a good idea.

If I haven't persuaded you, there's a forthcoming article in the Hastings Center Report by a social psychologist, Carl Schneider, who is a law professor, where they've gathered all the empirical studies.  It's called "Enough:  The Failure of the Living Will."  And they say the following: "Even if one assumes that living wills desirably serve a strong version of patients' autonomy, living wills do not and cannot achieve that goal."

So in sum despite its theoretical appeal to many people, individual autonomy over future end-of-life treatment as an incompetent patient may be too complicated to put into practice.

Besides these practical problems, there are moral and policy problems with the conventional focus on advance directives.  Certain advance directives threaten the welfare of incompetent patients.  In these cases giving priority to the patient's earlier choice would be detrimental to the patient in her current state.  So the conflict situations fall into two categories.

In one, the directive refuses a treatment that would effectively relieve an incompetent patient's pain or discomfort or would allow the patient to continue a life that appears to have value to her.  In the other one, a situation that's less thought about, but people you know in advance directives can say, "I want everything."  So someone says, "I want such-and-such treatment."  Later on it appears that giving the treatment would be extremely burdensome to the patient in her current state and it would not confer a countervailing benefit in the form of an extended life that would appear to have value to her. 

So in both of these cases the question is which should take priority; the advance directive or the observers at the bedside's idea of what seems to be in the patient's best interests?

Now, many would say that this prior "autonomous" should prevail. But based on the empirical data I've described a little bit, we could say, well, are the advance directive instructions the informed considered choice we would want in such an important situation?  And then, how should we balance the moral significance of this earlier, less than ideal choice by the individual against what seems to observers to be the patient's current welfare?

And then at a policy level this balancing has to take into account the moral duty to protect vulnerable and competent persons, and this is reflected in the parens patriae role of the courts and the anti-discrimination provisions of our disability laws.

So besides this moral and policy problem of threatening harm to individual patients, advance directives have had a second negative effect on patient care.  And this is inadvertent, but because scholars in bioethics and law and officials, legislatures, and so forth, focus on advance directives as the way to resolve future treatment dilemmas; that is for about 15 years the notion has been we just have to get everyone to make an advance directive and then we'll be set. But people don't make directives. They're vague and so forth.  So actually the majority of treatment dilemmas don't involve an advance directive.  But scholars and the legal system haven't done all that much to delineate what is acceptable care for patients when you don't have an advance directive.  The standards that should govern care of patients without clear directives remain relatively undeveloped, so there's not much guidance.  And as a result, incompetent patients are exposed to ethically questionable decisions on either side; both to give treatment and to withhold treatment.

So I think when we anticipate our possible futures as incompetent patients we should accept that we cannot exercise firm control over our later medical care.  That for the most part we're going to be dependent on others to protect us from harm and indignities.  But I don't think that accepting this means that we're helpless to prevent what we're worried about, that is undignified and burdensome care and burdens on our family and so forth. 

I think that many of the fears that motivate people to make advance directives could be more effectively addressed by changing the policy and clinical context in which incompetent patients receive care.  And there are two dimensions to this.

One, there have to be at the policy level efforts to clarify the scope of permissible decisions by relatives and others at the bedside.  So the way I think about it is there is a circle of permissible decisions for incompetent patients and then what's beyond the pale?  Either over treatment or under treatment.  And there hasn't been very much work done on that, and I think we might be able to advance the ball in that area.

This whole idea of what is in the patient's contemporaneous interest, this is an essential element of many actual treatment cases, but it's been inadequately explored.  What is inhumane treatment?  What is pointless treatment?  Those are the important questions, I think.

The other dimension of this involves improving the background conditions. So securing improvements in clinical care for chronically and terminally ill patients in general. And this has gotten a lot more attention in the last decade, so there's been a big advocacy campaign and medical organizations have been working on improving the care for dying people just in general, whether they have an advance directive or not.  And among the goals are to furnish all incompetent patients with treatment to promote their experiential well being and to allow treatment to be foregone when this appears to families and clinicians to be a reasonable option for the individual patient.  And here humane and dignified care is regarded as something the community should provide, a mission for the community rather than a matter for individuals to take care of through making an advance directive.  And this seems to me a more sensible and defensible way to plan for our possible futures as incompetent patients.

So, that's all I have to say right now.

CHAIRMAN KASS:  Well, thank you very much, Rebecca.

Just a point of clarification on one of the first of the suggestions at the end about clarifying the scope of decision-making.  Could you say just a couple of sentences?  I'm not sure I followed that.

PROFESSOR DRESSER:  Okay.  So the actual situation at the bedside now and probably in the future, I don't think we're going to see a huge increase in advance directives that are very specific.  The question is what should we do?  When would a decision not to treat be acceptable for this patient, we wouldn't be harming the patient by forgoing a feeding tube or some other kind of treatment?  And when does it seem beyond the pale and impermissible? 

So take that case of Margo that I wrote about in one of the articles and Dworkin wrote about, too. 

So here's this woman with pretty advanced Alzheimer's but she's still able to engage in low level activities and seems to be enjoying life.  She gets pneumonia, antibiotics.  Let's just say oral antibiotics to start with would be probably effective.  If a family says well don't give it to her, we don't think it's in her best interest or we don't think she would want it based on some vague idea of the person she once was but kind of an—there's no advance directive, so it's just here's what we think. She wouldn't want to live in this degrading state.  Is that something that should be permissible or is that something that law and policy should say no, families don't have that much discretion?  There has to be a better case for this treatment being burdensome.

So say a person like Margo gets cancer and needs chemotherapy?  Well, in that case chemotherapy has side effects, isn't effective in many cases.  You know, may extend life for a year or something; 50 percent chance of extending life for a year.  When somebody is as old as she is, 80 percent of people get some sort of burdensome side effects.  Now that's a harder case.  Is it better for her to get—I would say it's probably not in her interest to get that kind of a burdensome treatment.

So it's exploring those kinds of choices.  And they're always going to be somewhat fact specific.  But I do think that some general guidelines could be given that don't exist now.

CHAIRMAN KASS:  Thank you.

So these were substantive and not just procedural suggestions that you thought we should offer.

Let me call on Alfonso, but let me give—invite I suppose is the right word, our one practicing clinician here to at least think about a response from the bedside to this situation and whether the problem is as stated and whether some of these suggestions make sense.

But Alfonso is first in the queue.

DR. GÓMEZ-LOBO:  This is a very simple and elementary question, I think.  The way you present things, Rebecca, does this really mean abandoning the primacy of autonomy for a very reasonable set of circumstances and going back to sort of the old Hippocratic principle of doing everything for the patient's good?  Is that the shift I'm seeing here?

PROFESSOR DRESSER:  Well the Hippocratic Oath says, "Do no harm."  And I don't think that that means doing everything for the patient, because I think that can be harmful.

DR. GÓMEZ-LOBO:  I'm sorry.  I didn't mean do everything.  But that the main focus of the physician is the patient's good.  Now if you go against the good, it's harm.

PROFESSOR DRESSER:  Right. Right.

DR. GÓMEZ-LOBO:  But away from autonomy.

PROFESSOR DRESSER:  Well, I guess not completely. I think advance directives can be useful. In fact, I have an advance directive, a pretty specific one because I think it's a prudential thing to do. It gives your family members more authority in the hospital; that is if you can wave this piece of paper, the doctors are more likely to pay attention to you. But I have a lot of question marks in my advance directive, I'm not sure what I would want in various situations.

So I don't think future-oriented autonomy is going to solve most of the bedside dilemmas.  I think some situations, the vegetative state is something we probably would want to talk about.  Because Alzheimer's — the very end stage of Alzheimer's is the vegetative state.  But, see, in that case I would say the patient does not have sufficient interest that the treatment would have to continue, but I know people at this table would differ with me on that.  But it is going back to looking at what are the interests of the individual in this current state because future-oriented autonomy or "precedent autonomy" as Dworkin calls it, it doesn't seem to be workable or practical even if you think it ought to govern.

DR. FOSTER:  Well, I really don't have much to say.  In the state of Texas, for example, it is state law that a directive has to be obtained every time if the patient comes into the hospital. It's not optional. One has to do it.  So, you know, discussion about it is irrelevant in terms of that.

The problems that you've spoken about are very real problems.  Families decide at the end they don't want to, you know, either way as you've pointed out.

Another thing very complicating for physicians is that even though there is an advance directive, the fear of malpractice suits about withholding treatment is such that patients in nursing homes almost inevitably, no matter that they're comatose and have no ability to compare are sent to the hospital.  And they're always admitted to the hospital and they end up being treated for the things.  I mean, we every single day in Parkland Memorial Hospital we have people sent back in who have advance directives that are clear in their intent and are not paid attention to by the nursing homes because nursing homes have been sued by families that have changed their mind about doing that.

And even the hospital itself, sometimes because of beliefs of the staff that override what the family wants. I'll give you just one example.  A patient who had a fungating breast cancer through the wall of her chest. It was a massive thing.  Couldn't even bring it down to remove the mass. And the family wished to follow the advance directive.  And a nurse on this floor who believed that this was wrong to have any withholding of treatment, it was a form in her view of—I don't want to use the term murder, but that's what she thought.  She, on her own over the weekend, when I, as the attending physician, was out of the hospital, consulted the hospital lawyer and said that she would do things.  So I came back in the next day and the feeding tube was back in this person and was sent out, you know, to die a little bit later because of a legal requirement in the hospital. So it's a complicated thing.

I feel much better if I have an advance directive from a person.  You know, my own view is if a person does that when in their own mind, it is correct.  I mean, I have one, too. And I would think that that would be more important than now that the patient's 85 years old and dementia has taken the place so there is no thought and now somebody says well she would want to stay in this state.  Well, I mean in one sense that is violent assault on her autonomy because she has said what she wants and now—I mean, they can you know it's assumed autonomy because she's not present.  I mean, I know you could do that. But it seems to me that that's a terrible thing to do.

I would be if I had any way, if my kids did that to me, then I would probably try to send a little scary lightening bolt not to hit them, but to give them a little scare.

I mean, I think it's a moral issue not to follow what the patient says when they were mentally component.

Again, I think the things that you have talked about are very real, but we don't have options about that in Texas.  Whether they're followed, but we have to have it done.

CHAIRMAN KASS:  Could I ask you as a factual matter, are these advance directive about end-of-life care when people have terminal illness?  Because I think one of the things that Rebecca's papers have shown us is that while lots of people have been doing things for end-of-life treatment when people have terminal illness, the large population of people who are demented who are not yet with terminal illness—

DR. FOSTER:  Most of these apply to sort of end stage things.

CHAIRMAN KASS:  End stage things?

DR. FOSTER:  Although they're written in such a way that treatment that is not expected to be of benefit and so forth can be withheld.  Most of it is end of life. That's where the do not resuscitate orders come in.

CHAIRMAN KASS:  Bill May.

DR. MAY:  I may be incorrect, but I've heard from some people that durable power of attorney may be actually more helpful.  How about advance directives plus durable power of attorney to make more sure that institutions will not be intimidated?

DR. FOSTER:  Well, I think that's absolutely right. I mean, most lawyers if you're getting your will done and so forth, you have a durable power of attorney coupled with—and that makes it much better to do that, yes.  But the problem is that poor people can't get that. I mean, it's hard for them to get it in terms of getting legal help and so forth. And if you take care of the poor, which we do to a large extent in Parkland Hospital, they don't have the advantage of advice about things of that sort.

CHAIRMAN KASS:  Frank.

PROFESSOR FUKUYAMA:  Well, I actually found Rebecca's, the readings that were in the book quite helpful in thinking about this. Because I guess my view of this had always been the cases where the patient was vegetative or simply had no will or autonomy whatsoever, which in a way is the easy case.  But the Margo case that you cited from Dworkin was actually the much more challenging one where the choice is actually—so that autonomy is not something that's in a binary state; it's either on or off, there are actual different degrees of autonomy.

And so in the Margo case she had a reduced degree of autonomy that might be compared to that of a child.  And what Dworkin was arguing in effect was that the will of the younger Margo ought to supersede the will of the older Margo even though the older Margo, even though probably would actually want to be kept alive and have the antibiotics and so forth.  And so it really does seem to get back to this discussion which I'm sorry I missed the bulk of in the earlier session about where is the personhood there.  I mean, do we have a grounds for saying that the real person was the one with the more fully formed adult will or if you have a reduced degree of autonomy, you know are you somehow not a person and therefore should one will bind the other.  And that seems to be the kind of interesting—the most more interesting case.

And actually after you walk through that case, it just seemed to me that it really was not obvious at all, you know, which autonomy we should respect.

DR. FOSTER:  Let me just say one other thing very quickly, and I don't want to sound self-serving about a profession and so forth, but the courts have clearly held that families and patients cannot require a physician to do or not to do any things. These are advice.  I mean, we're not obligated for an 85 year old person to do chemotherapy.  The courts have made that clear.

There is a second issue of judgment that the physician may have.  The late Franz Ingelfinger, who was the long time editor of the New England Journal of Medicine, himself a gastroenterologist who worked on the esophagus developed esophageal cancer.  And he wrote an article in the New England Journal of Medicine called "Arrogance."  This was a time of the peak of autonomy for patients.  Women would be squatting over mirrors to try to see if they could do their own pelvic examinations and see if they could just see—because they had the autonomy for their own health.

Because he was probably the most famous physician in the world, the editor of the New England Journal of Medicine usually is in terms of name, he received advice from all over the world telling him radiation first, surgery this, that and the other.  And finally someone told him, he says "Franz, what you need is a doctor."  And so he chose an internist and said, "I put myself in your care."  And afterwards he said it was like a huge burden off of his life. He got back to editing the New England Journal of Medicine.  And, by the way, his two children were doctors and so forth and so on. And he wanted somebody who was competent who cared for him to make the decisions should we do this or should we not do that.

Now, one could say that's a very arrogant position to say that maybe the physician would be the best person to make a choice as to whether this was good or helpful or not.  And I'm not defending that at all.  But I think that most physicians—I don't have statistics. But I think that many physicians will always want to do what they would do for their own family.  That's a question that's asked us all the time; if this was your wife or this was your mother, what would you do.  And when one answers under those circumstances, almost always in my experience the family will go with the judgment of the physician which is there. Because you try to explain what the downsides are, what the upsides are, what a treatment that might add two months, you know, but makes one sick is usually not—there might be circumstances where you would do that if somebody didn't have time to make a will or something. I mean, I've done that.  Do a treatment that might be give me two or three months because of some critical issue in the family.

So I do think that there's been an arrogance about doctors who think they're gods, you know.  But on the other hand, we probably do have a better sense of what should be done than the family does.

When my own father died of lung cancer—he wasn't a smoker, he just had an endocarcinoma — he had not wanted anything.  He just had an IV glucose, just a glucose to keep open so they could give, you know, if he needed anything to do.  And his granddaughter came in there and began screaming that when that was taken out of the arm.  It was just giving fluids.  She began to scream, "They're killing grandpa."  It was not killing grandpa, I mean it was just glucose and water going in there.  He had no need for it.  And we just took it out.

So, anyway, I think that there is sense where the physician should have, you know, at least advice in these things and maybe more than that.  I don't know.

CHAIRMAN KASS:  Rebecca, you want to—

PROFESSOR DRESSER:  A couple of points.

One, I agree with you that having a supportive physician can be the key to these cases.  However, different physicians have different values. So some physicians, for example our former Surgeon General Everett Koop, there's a famous book called The Long Dying of Baby Andrew about a premature infant and one of their physicians was Dr. Koop.  And at least at that point in his life you had to do everything.  And so if the individual physician has these certain values and you're a family with that physician, that's what will be proposed/imposed. And maybe you're with a physician whose—well, what's it worth to have a life with dementia?  Not very much. So let's not do anything.

So it's so ad hoc, that's the problem with that situation.

The other, I don't know this Texas law specifically.  There is a federal law, the Patient Self-Determination Act that says every patient going into a hospital, a nursing home, an HMO is supposed to be asked whether they have an advance directive and told their rights under state law to make one. And this has been in effect since the early '90s. And this was supposed to be the thing that would really push us over the edge, you know, getting people to do these things more frequently. And they haven't.

And part of that statute says no one should be forced to make an advance directive.  I'd be kind of surprised if Texas forces you.

DR. FOSTER:   Yes, I may be quoting it wrong at being forced. It may be more close to what you—but the Texas law is separate from the federal law.

PROFESSOR DRESSER:  Right. Yes.

The other thing about the—I agree part of the problem is defensive medicine and the legal—the conservative attitude of hospital physicians and nursing home administrators.  And that might be something we could talk about.  That they're too worried about lawsuits.  In fact, the expert on this, Alan Meisel who has a treatise called "The Right to Die," he says there have been more lawsuits by families for over treatment when treatment was given that either the patient didn't want or the family didn't want and they were so angry they went to court to sue for that.  Then this whole problem of families suing for under treatment.  So I understand that's a big perception among doctors, but I'm not sure how much of it is actually true.

CHAIRMAN KASS:  Gil and then Jim Wilson.

PROFESSOR MEILAENDER:  I'd like to come back to a version of the question Alfonso asked, Rebecca and just sort of get you to think a little more about it.

I would have said from your comments here and certainly from the reading as well, that you were tilting in the direction of favoring what we might call an objective best interest standard as opposed to a more subjective patient autonomy standard.  But then with your answer to Alfonso I wasn't sure how far you wanted to push that. It turned out that you got a very specific advance directive of your own and you seemed to kind of back off a little bit from that.

And so could you clarify?  I mean, the way I took your comments here was really to say, well we've got these laws about advance directives on the books and they're probably not going to go away.  I mean, you weren't calling for some sort of full force attack on them or anything. But in fact they don't get the job done, they don't really accomplish in many cases what we want.  And we'd be better off with respect to many patients, in particular those cases where our hands haven't been tied legally by an advance directive that does exist, we'd be better off turning in the direction of thinking simply about what is in the best interest of these patients, trying to lay out at least some boundaries for detailing that, then we would be thinking simply in terms of their autonomous choices or putting our efforts to encouraging more of them to express those choices through advance directives.  That's what I thought was the direction you were heading, but then I wasn't so sure after your response to Alfonso.  And I wonder if you could just say a little more about just your own thought on it?

PROFESSOR DRESSER:  Sure.  My view is that we do have to focus on the patient's current interests.  One of the reasons I gave you, the two medical journal articles, was I thought that they did a beautiful job of describing the reality of these cases.  And the struggle that many doctors have, that's the other problem with just saying, oh well, good doctors will take care of it.  A lot of doctors really are suffering with trying to figure out what they ought to do.

So, yes, I think we need to focus on that.  But then the other question is all right, you focus on that in order to say okay if a family asks for X it's fine, we think that's permissible. That's within the scope of best interests, whatever you want to call it, or it's beyond the pale.  If an advance directive asks for nontreatment or treatment, it's within the scope of acceptable treatment options, so go with the advance directive.

If the advance directive asks for, I want active euthanasia if I ever get Alzheimer's disease, you don't follow that advance directive.  It's clearly beyond acceptable medical practice at this point in our—not even in Oregon is it acceptable.  But there may be other cases where somebody says, "I don't want anything" in their advanced directive where we would override it.  Or "I want a heart transplant if I have dementia"; we wouldn't follow that directive.

So in order to decide whether to give effect to the advance directive, you have to pay some attention to the patient's current interests.  In order to decide whether to give effect to the family's request, you have to pay some attention to the patient's best interests.  So they can work together.

PROFESSOR MEILAENDER:  Just a quick follow up.  But if you're prepared to override an advance directive on the grounds of current best interest, that means you really do want to give primary weight to the objective best interest standard, right?

PROFESSOR DRESSER:  Right. But I would say that probably in many cases the advance directive does not conflict with the patient's current interest, such as I would think in the vegetative state, but you would not think that, I don't think.

CHAIRMAN KASS:  Jim Wilson?

PROFESSOR WILSON:  I want to return to a statement Dan Foster made about his experiences reinforced by Rebecca's observation, with which I concur that the thrust of the culture in which American hospitals and medical practice is now embedded gives them, on the whole, a rather conservative view.  That is to say conservative in the sense that they want to supply treatment because the risks of not supplying treatment not only lead to more lawsuits, which they may win, but run against the several state and federal court decisions about when treatment can be withheld.

But now let's imagine this culture changes and let's put ourselves in The Netherlands where assisted suicide is legal and where it may increasingly become legal in some parts of the United States.  There the doctor's attitude, it seems to me, will change, one saying we must do whatever is necessary to preserve this person to doing whatever is necessary to end the burdens on the system.

Now, at this point I had hoped to give you the exact social science citation to The Netherlands' experience, and I cannot remember it because I am in my pre-dementia stage.  But if you press me hard, I will get the citation and I think it will show that altering the legal and cultural system alters the behavior of doctors.

CHAIRMAN KASS:  Peter and then Janet.

DR. LAWLER:  Imagine there were a law requiring everyone to have an advance directive and we all had to do it on the same day.  We would probably want to maximize our autonomy. We would probably say rather than be incapacitated, I'd rather die.  Rather than be a burden on my family, I'd rather die.  And you can imagine the guys sitting around the bar kind of competing over who has the most manly advance directive.  But this is a natural thing because human beings really want to be willful in that way; they really want to have control over their lives.  They really wish they wouldn't die and get incapacitated.

On the other hand, actually put in the situation that Dan described, his answer is exactly right; I would want to have a competent person who cares for me making the decisions.  Because at that point I'm not fit to be autonomous.  How could I be autonomous?  I would rather have that burden lifted from me, although it would seem in the nonsexist sense, unmanly to sign something like that.  Although now that I've heard all of you speak, that's what I would do.  If the law required me to have an advance directive I would say I want a competent person to care for me according to my objective best interest.  And it's hard for me to specify what that might be.  In any case, I'm not going to be in a position to know at that point, so that's what I would do.

That doesn't answer that many questions, because it's unclear for reasons that have been given how much my doctor would really care for me. He might be more worried about legal questions or whatever, although in principle I'd rather have a philosopher-king doctor who loves me more than any other human being at that point.

I may not be able to write all this down in my advanced directive, right?  But I think all this does point to the objective best interest.

In the case Rebecca laid out of the woman who is child-like and happy, I don't think it's a close call. I mean, she gets the treatment because I think that is in her objective best interest.  You wouldn't withhold treatment from your dog in that situation, your dog being child like and happy and have some kind of problem that could be resolved.

So I think somehow I'm not against advance directives in every circumstance.  It's natural for people to want to do something like that. I just don't think that for reasons you gave, it would work out that often. And so legally we really shouldn't allow them that much.

CHAIRMAN KASS:  Excuse me, Janet, please?

DR. ROWLEY:  Well, I have multiple different concerns about the discussion, and I'm probably the closest to having these problems come as realities. But I would like to say that I think it is appalling that advance directives that an individual who is thoughtful and considers what their life is and looks to the future very uncertain of what their life will become, that their advance directives when they are thoughtful, intelligent individuals should be the prime governance of how that person is treated in the future.

And I think that to override that by saying well the person is still alive and happy, not the way the person was, but not unhappy and that less competent state is going to persuade us that we ignore the person's advance directive, I think that's absolutely dreadful.  And I think that we have to come back to reality, which often doesn't have much place in our discussions.

We heard yesterday about the needs for children and the need for better, richer environments for many of our children for them to be able to function at a level that they could.  We are a society with limited, restricted resources.  Not unlimited resources.  And we're going to have to make choices.  And I think for the state to say that some person in a vegetative state, that the state, the government has an interest in seeing that that person is kept alive at thousands of dollars a day, whereas we won't spend that kind of money for helping children who are our future, is the most unethical thing that I've heard of.

CHAIRMAN KASS:  Rebecca, please.

PROFESSOR DRESSER:  I totally agree with- well, I have a lot of agreement with the last part of your statement.  So with Margo, the case, would you follow her directive not to have the antibiotics?  And then also, what about someone whose advance directive says, "I want the doctors to do everything they can as long as my body can keep on going. It's God's decision.  So give me everything."  Would you give equal respect to that, quote, autonomous choice?

DR. ROWLEY:  Well, I guess I hadn't really realized that many people in their advance directive do choose everything.  So, that's a more difficult question.  And you're right, if you are going to say one is absolutely supreme, then you can't distinguish between those.  And I haven't thought about it enough to give you an answer in that.

I think in the case of Margo that I would withhold treatment because I think one has to consider not only the individual, but the family.  And I was actually going to ask Leon about his mother. If his mother had had a choice, would she want to be the way she was for that period?  Because, I mean, I want my children to remember me as I am now. I don't want them to remember as I may be in the future, substantially less than I am now. 

It's a question of controlling one's future. And I think that as I watch my friends—this fortunately was not my case, and my parents or my husband's case with his parents, but I watch friends just agonize over the very slow, painful demise of parents and the feelings of despair that it engenders in the children to have to watch this and to be, in a sense, subjected to this painful situation.  I would not want that for my children.

And so I think that under some of these circumstances, we have to deal with our mortality.  And we have to try to think not only what our responsibility is to ourselves and our family, but to society.

I think that we have gone overboard of trying to be concerned about older individuals.  They have political power.  They vote.  Children have no power, no vote and yet they're our future.  If you ask a grandparent are you going to take away from your grandchildren's resources to fully develop because they don't have the educational opportunities, no grandparent is going to say save me and spend thousands and thousands on me and deprive my grandchildren. But that's not the way society frames these issues.  And yet I think they're a critical way that the issues should be framed because we live in a real world.

CHAIRMAN KASS:  As it happens, I'm next in the queue.

[At this point, Dr. Kass requested that transcription cease while he related a story of a personal nature. The transcript resumes about two minutes later, following the story.]

CHAIRMAN KASS:  It does seem to me that when the advance directive are being used as a substitute for the medical judgment of the doctor at the bedside, then it seems to me we substitute legalism and a kind of rigidity for the obligation of prudence and for the obligation of care for people on the spot.  But it does seem to me also that as Dan Foster said, the existence of the advance directive can't prescribe for the details, but tells you something about the disposition of the person.  It's a rough guidance.  And I think people would be helped if we don't treat them as absolutely binding documents because you have to leave a lot to the circumstances. But it does tell you something about which way the patient leans and at least with some specificity of what needs to be done and what should be allowed to be done.

I don't think, however — I think most people don't have their own doctors, so this sense that you're going to be in the hands of somebody who knows you a long time who can make this decision in the light of a long experience.  You know, it's the privileged people who have that, and even fewer and fewer of those.  And many, many of the hospitals now simply turn these things over to ethics committees who are now making these decisions as best they can.  They're hard decisions, but they don't make them with full knowledge, concrete knowledge of the patients that they're dealing with.

So what to do here?  I'm not unfriendly to trying to develop certain kinds of guidelines, rough guidelines of the kinds of considerations that ought to enter into whether treatment is too much or when you might say, look, we don't know what the patient really wants because the patient can't tell us, so we have to somehow imagine the patient's best interest and not simply project our own, by the way, which is always a problem.

This is now a question for you, Rebecca.  Do you think that one could in general terms, given the tremendous variability of what actually presents itself in clinical situations, do you really think that a committee like this or a government body could sort of say in certain kinds of objective terms the Schiavo case goes this way, Margo case goes that way and articulate the objective criteria?  Now, I would like there to be some kind of objective criteria, but I can't imagine except perhaps with the same kind of efficacy that the advance directive provides a kind of disposition or an orientation, but I can't imagine that we could prescribe anything that any person on the spot would feel somehow bound by.

PROFESSOR DRESSER:  Well, I agree it's very daunting and difficult, and that's one reason everyone just wishes advance directives would solve the problem.  But they're not going to solve the problem.  And so what to do then?

Well, courts actually have outlined some objective standards.  There's one called the "inhumane treatment" standard, which is a New Jersey Supreme Court decision.  If there's no advance directive, life-sustaining treatment is not required if the burdens of treatment would be so severe and the benefits so small that imposing the treatment would be inhumane.

And so then you can talk about—and I have lots of legal cases which are somewhat rich in facts that are good examples.

Where would most of us agree?  This seems to be too much inhumane.  Where might we have different perceptions?  And it presents this interesting problem of other minds, that is how can you ascertain what is going on in the mind of someone with dementia?  But this is done all the time in the clinical setting.  I mean, this very sort of informal judgment about well, let's try to do what's best for the patient.  I've been involved in lots of ethics committee meetings about patients like this.  And we talk about the facts.

But an inhumane treatment.  Other people have called it an anti-cruelty standard.  And then, you know, try to flush it out; what does that really mean?  What is within the scope of acceptable decisions that one could justify with that kind of a standard?

The more controversial one is "pointless treatment."  Now many people, and in surveys 80 some percent of people in the U.S. say they would want their families to be allowed to choose against a feeding tube or any other kind of treatment if they were in a vegetative state.  So many people in this country would see that as pointless, not everyone.  So we might say that's where you might flip the presumption and say if you want continued treatment in a vegetative state, you have to make an advance directive asking for it.

But then how far away from vegetative permanent unconsciousness would you go?  Barely conscious, which is a sort of a second to the end stage of Alzheimer's.  And we have some legal cases about that.  And then, you know, up the scale.

When does treatment become pointless?  Of course, the danger is the slippery slope.  Once you say on a conscious patient who the treatment would not be extremely burdensome, but you don't have to give the treatment because it's not conferring enough of a benefit on the patient to continue life, then you open up the door are we going to apply this to people with mild dementia, people like Margo.  You know, where would you draw the line?  And so that's another challenge.

When families or advanced directives say, "I don't want treatment in that state," is that something that's normatively acceptable?  I think that you can say some things.  You can't, obviously, have a recipe.

CHAIRMAN KASS:  Gil and Jim Wilson and we'll take a few more.  We've only got one request for public comment, so we should be through by noon in any case.

Gil?

PROFESSOR MEILAENDER:  Well, I just wanted to make a short comment. I mean, I think actually there's a lot more we could say.  It's very complicated.  But one shouldn't think—at least I wouldn't have thought that the kinds of guidance that Rebecca has in mind would, as it were, solve cases.  See, I mean your move was to the infinite complexity and difference between all sorts of cases.  Guidelines like that or moral norms even can't substitute for practical wisdom.  You still have to decide what the circumstances of the case are and how they relate.  But it's still true that one could—for instance, I would say we should always act in such a way that we attempt to benefit the life the patient has, not ask whether the life is a benefit.

And that's arguable, of course. I understand that.  But there's an example.  Now, that doesn't tell you in any of the cases you had in mind what practical wisdom would decide was benefiting the life the patient has.  But still, it's a relatively objective standard that tells you kind of what you're supposed to think about and helps you to understand that if I find myself beginning to think just whether it's a benefit to have this life at all, something's gone awry.

CHAIRMAN KASS:  Jim?

PROFESSOR WILSON:  I missed part of the conversation, so I may be furrowing ground that should best be left unfurrowed.  But I do want to argue for the continuing effort to develop some kind of legal standard. Not because I'm one of those people who think a legal standard can settle such matters. I do not at all think that.  I am very impressed by statements that have been made here this morning about how complex, how difficult, how subtle and how subject to change the feelings may be of persons who are in some kind of medical care.  But I worry about anything that we or others say that leaves it at a standard to be judged by the people involved or by their doctors, or by some combination of their doctors and their people. Because although some may use the fine standards that Gil has suggested, others may be preoccupied with ending pain or ending discomfort or ending cost.

Requiring an advance directive, perhaps one substantially superior than has now been prepared for people, the sort I have signed, it seemed to me, constitute a rebuttal presumption, and that this rebuttal presumption would be a general guidance that would set kind of the outer limits.  But then in interpreting that rebuttal presumption, we would expect and the courts would require that we have, insofar as we can, a careful conference with the patient, if the patient is still conscious. Obviously, the patient may not be.  With the physicians and with family members.  And that we would set up differing legal standards as Rebecca's essay in the Hastings Journal makes clear that if the patient is conscious, though has no prospect for improvement, the standard would be clear and convincing evidence.  If the person is unconscious and in a vegetative state, the evidence would have to pass a standard of preponderance.  And there might even be cases where you would have to have  a settlement beyond a reasonable doubt, to which would be the highest possible standard.

But requiring an advance directive as a condition for admission to a hospital would set up a loose standard within which a guided dialogue would take place that the courts would oversee.  And I say this not simply because I think it's a short circuit to solving the problem.  I don't think it's a short circuit at all.  I think it simply reinforces the enormous complexity of the problem.  But it does get the law involved on the side of the right of the living person.  And I very much worry that as I look around the world, the law in many countries is slipping away from preserving the life of a person, and I don't want that to happen here.

CHAIRMAN KASS:  Thank you.

Bill May and then Frank.

DR. MAY:  Earlier I talked about a durable power of attorney of strengthening advance directives.  Now ideally Dan had said it would be better to be able to make a choice of a doctor you really trust to make the decision.  But if you go the route of advance directives and durable power of attorney, there's one further issue that too often, this is taken to be an instruction simply to the healthcare institution.  And it seems to me in the setting of the family, especially as we think through the importance of prudence in reaching specific decisions, that it shouldn't be understood to be a private transmittal of instructions to the nursing home or to the hospital or to the physician.  It should be ideally an occasion for discussion within the setting of the family.  Because you do have temporary caregivers, that is doctors and nurses, but you have those people more permanently involved with that individual, for whom this is an event that they still live with, as all of us around the table surely do.

There's not simply the original decision, what you do, but the decision also to live with that decision.  And what one might make at seven years along the line, may not yet have been an appropriate moment for living with that decision.  And this, it seems to me, would be helped somewhat if we didn't think of this as simply a legal instrument to deal with obvious excessive zealous care on the part of the hospital, but an occasion not only for that individual, but other family members to come to terms with their own mortality. Because surely in burying a child or burying a parent, derivatively there, you have to come to terms with your own end.

CHAIRMAN KASS:  Frank?

PROFESSOR FUKUYAMA:  Well, I think that Janet actually raised a—you can go, Janet.  I'm going to say only complimentary things. I do think you raised actually a real important issue.  Because we've been discussing this entirely in terms of the moral considerations of an individual's or an individual family's decision but there are these big externalities to all of this. Because there's a social cost associated with some of these decisions.

Now, actually, it seems to me that societies have made some of these decisions for individuals by, for example, rationing health care at later stages of life.  This now tends to happen primarily in Europe where you have national health plans and you simply cannot get treatment past a certain age.  You can't get dialysis or you can't get a transplant or something like this as a means—and I think we all recognize the fact that there is a real disproportion between the amount of money we spend for this last 6 months' care in people's lives versus the way we allocate resources to other kinds of pressing health problems.  I would say two things about this.  One is that the political reality is that that kind of rationing is being eroded everywhere that it exists so that in Holland, for example, you know there are fairly strict rules on who can get health care. But I think the direction of the politics is pushing to offer more care to people later in life.  And so the political reality really goes very much in the other direction.

On the other hand, and I think this might be an interesting thing perhaps for the staff to look into, there's this huge demographic crisis that is overhanging the western world.  By some estimates, I mean Nick Eberstadt has this estimate that in 50 years the median age in Italy is going to be 60 years old.  And the externalities are going to be so crushing under some scenarios that are going to materialize in a generation or two that it does seem to me that societies are going to have to really be forced to take a kind of hard look at some of these externalities.  And I think it would be useful to frame this discussion of the individual morality of these decisions in the context of a broader economic analysis of the problem.

CHAIRMAN KASS:  Thank you.

Let me declare this discussion at an end, even if there are additional things that people want to say.  In a moment I'll ask for the one person who wants to make a public comment.

Just a very quick sense of the house.  My sense is that we have a topic here.  Not yet carefully defined about how to proceed with it, but this is personally serious, socially serious, only going to get more so if the demographics are right and not yet obvious what our contribution to this matter should be, but there's certainly enough for us to try to develop some staff work and bring this to the next stage.

Have I read the reactions around the room?  All right.

With Bill May's help and the staff's help between now and the next time, we will move this project forward, and we have some work to do on the other matter that we talked about yesterday to see whether and how we can formulate that to make it a more tractable matter for the Council.

If people would simply skip the break, let's go directly to the public session and Richard Doerflinger of the United States Conference of Catholic Bishops has asked to make a public comment.

Welcome back.

PUBLIC COMMENT

MR. DOERFLINGER:  Thank you, Mr. Chairman.

I would like to comment on the Council's new report.  A formal reaction was issued yesterday by the Catholic Bishops' Conference, and I hope I might make that available to Council members and place copies on the table outside for anyone else who might be interested.

Time is short and there's really no need to discuss the many matters on which we agree.  So let me go straight to the two issues on which I continue to disagree with the Council, even with some members who share my moral convictions about the human embryo.

First, on a limit of ten to 14 days for embryo research.  Clearly it is not inherently immoral to support a partial or incremental ban on an evil, and I reflected on this at some length in my June 12th testimony to the Council.  At the same time, one must always ask what this is an increment towards and what the likely effect of a particular proposal is.

The facts as I see them are these.

First, if passed now such a limit would prohibit little if any embryo research now going on.  All attention is focused on the stem cells to be obtained from blastocysts 4 to 6 days old, and this is what cries out for response now.

The 14 day limit, in particular, would ban only research that is now physically impossible, because no one can keep an embryo alive in a laboratory past 14 days. 

There is a real and present threat arising from laws like the one in New Jersey, which seem to allow cloned embryos to be placed in women's wombs and farmed for their fetal cells— the only way now possible for bringing embryos past 14 days.  But that problem is addressed in a separate Council recommendation which I believe we all support.

What, then, will be the direct and immediate impact of this proposal?  It seems to me it would be twofold.

First, contrary to at least some Council members' intentions, it may well teach the message to many Americans that there is some qualitative, morally significant difference between embryos before that point and embryos after it.  That danger is very real because many people once held this view regarding the appearance of the so-called primitive streak at 14 days, which was thought to mark the difference between the pre-embryo and the embryo.

As I documented in the appendix to my June 12th testimony, that view is now discredited among most embryologists, but still promoted by many who find it politically useful.  It would be tragic to reinforce that fallacy, to teach the American people bad science that may lead them to make more bad decisions about the early embryo.

The other immediate impact as announced by some Council members yesterday, and I appreciate their candor, is that this standard will be used immediately as a weapon against existing state laws and federal funding policies that now respect the embryo from the beginning.  For that matter, it may even be used to go back and attack the Unborn Victims of Violence Act just signed by the President yesterday, which respects the embryo from the beginning in violent crime situations.

Most immediately, it will feed into a renewed campaign to overturn current federal policy against encouraging the destruction of new embryos to get their stem cells, a campaign that for all I know was timed to coincide with the date of release of this report.

Knowing that this is the actual intent of some supporters, it would be irresponsible of me to risk facilitating that agenda, which is the opposite of my own, without a very serious reason— which, for the reasons stated above, I do not think I have at this time.

This is a morally based stance. It may be that people with the same moral convictions come to a different conclusion based on a different perception of the facts.  And in that case, I would like to share with them the evidence for my understanding of the facts and invite them to do the same for me, with the goal of making all of us more rational.

I think I've used up most of my time on that.

On point number two, the proposal regarding the creation of embryos by bizarre means with the intent to initiate a pregnancy, let me just say that it continues to seem to me operationally identical to key language in the Greenwood Cloning Bill of 2001, House Resolution 2172, which attempted to ban the use of "somatic cell nuclear transfer technology with the intent to initiate a pregnancy."

In a June 2001 congressional hearing, that language was thoroughly criticized and discredited by some committee members, by the witness from the Department of Health and Human Services, and most of all by myself and one other witness named Dr. Leon Kass.  Without going into details, Leon, I still find your testimony compelling.

But after speaking with Council members yesterday, I think I better understand why some Council members chose to support this language, from a valid concern about the possible rise of an industry promising manufactured or designer children to vulnerable infertile couples and others and advertising themselves as such. I believe that that goal can be met by other means, and I will certainly do more thinking about how to do that without raising the conundrums that regrettably make me decide not to support this last recommendation on creating with an intent to initiate a pregnancy.

I hope the Council members, despite the fact that the report is now issued, will also continue to think creatively along those lines.

Thank you very much for the opportunity to speak today.

CHAIRMAN KASS:  Thank you very much for the as usual, very thoughtful and well reasoned presentation. And we will continue to think about these matters, no doubt, and even speak about them together.

Anybody have any epiphanies?  Last words?

The meeting is adjourned.

Safe travel. Look forward to seeing you in June.

(Whereupon, at 11:50 a.m. the meeting was adjourned.)


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