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.,
American Enterprise Institute
Rebecca S. Dresser,
Washington University School of Law
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Francis Fukuyama, Ph.D.
Johns Hopkins University
P. George, D.Phil., J.D.
William B. Hurlbut,
Peter A. Lawler, Ph.D.
Gilbert C. Meilaender,
Janet D. Rowley, M.D.,
The University of Chicago
Michael J. Sandel, D.Phil.
Diana J. Schaub, Ph.D.
James Q. Wilson, Ph.D.
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
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
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
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.
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
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
DR. SCHAUB: Yes, sure. There may be disproportionate
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
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
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
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
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
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
DR. KRAUTHAMMER: Of course there are. I'm sorry,
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
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
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
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
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
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
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
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
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
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
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,
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.
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
[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
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
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
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
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.
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
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
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
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
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
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
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