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Friday, April 2, 2004

Session 5: Bioethical Issues of Aging I: 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 Advanced 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 advanced 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?


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.


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 advanced 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 advanced 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.


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.


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 advanced 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.  Advanced 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 advanced 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.


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.


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.


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.


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.


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. 


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."


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?


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 advanced 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.)

  - The President's Council on Bioethics -  
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