Meeting Transcript
September 10, 2004

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

COUNCIL MEMBERS PRESENT

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

Benjamin S. Carson, Sr., M.D.
Johns Hopkins Medical Institutions

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

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

Michael S. Gazzaniga, Ph.D.
Dartmouth College

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

Mary Ann Glendon, J.D., L.LM.
Harvard University

Alfonso Gómez-Lobo, Dr. phil.
Georgetown University

William B. Hurlbut, M.D.
Stanford University

Charles Krauthammer, M.D.
Syndicated Columnist

Peter A. Lawler, Ph.D.
Berry College

Paul McHugh, MD
Johns Hopkins University

Gilbert C. Meilaender, Ph.D.
Valparaiso University

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

Michael J. Sandel, D.Phil.
Harvard University

Diana J. Schaub, Ph.D.
Loyola College

James Q. Wilson
Pepperdine University

INDEX

• Session 5: Aging and Care-Giving: The Ethics of Therapeutic Interventions in Patients with Advanced Dementia
  
• Session 6: Aging and Society: Perspectives on Policy
  
• Session 7: Public Comments

WELCOME AND ANNNOUNCEMENTS

CHAIRMAN KASS:  Can we get started, please?

I was reminded by astute staff members yesterday that our proceedings yesterday were not quite legal in that I forgot to mention at the opening of the session that we were meeting in the presence of the designated federal officer Yuval Levin in whose presence this is a legal gathering.  I trust that the record of the discussion yesterday will not be expunged, but let this be a retroactive acknowledgement that this is a legal —

(Laughter.)

SESSION 5: AGING AND CARE-GIVING: THE ETHICS OF THERAPEUTIC INTERVENTIONS IN PATIENTS WITH ADVANCED DEMENTIA

CHAIRMAN KASS:  The title of this morning's session is "Aging and Care-Giving:  The Ethics of Therapeutic Interventions in Patients with Advanced Dementia," and the discussion will be built around a really quite remarkable paper in my opinion written by Eric Cohen, whom I've invited to join us at the table for this discussion.

When persons with dementia get sick, the caregiver's dilemma.  We move in this session from the questions of ethical attitudes and dispositions to a particularly vexing set of concrete ethical questions involving patients with advanced dementia, how vigorously to intervene medically in the event of their supervening additional illnesses or infirmities.

And Eric's paper has laid out — it's in sort of two parts, the beginning a kind of analysis of this topic in terms of questions of what are the moral boundaries within which such decisions should occur; what are the goals that should guide the caregiving decision-makers; what are the relevant particularities that enter into such decisions; and then finally, because he felt that it would be perhaps cowardly to have a kind of an analysis without offering some kind of pointers or directions, he offered toward the end his own provisional conclusions.  And I think I won't rehearse that.  I trust the paper has been carefully read.

By way of introduction I want to say only a couple of things.  First of all, for the purposes of this discussion, I would like to treat this in the spirit of Eric's paper as an ethical question, not yet a policy question, a public policy question.  We treat this as the caregivers' dilemma partly because it's the concrete point of departure, partly because as Gil admonished us yesterday, it's unlikely that one is going to think terribly well at the public policy level about these things if we can't think through carefully enough the ethical dimensions of the  individual cases.

Second, there is a long tradition about the ethics of foregoing lifesaving or life extending interventions once upon a time handled by the distinction between ordinary versus extraordinary means or obligatory versus optional treatment.

And the question for us is to what extent does that traditional analysis still function adequately under the conditions which were not envisioned by the development of that tradition, namely, circumstances in which, as Joanne Lynn's paper pointed out, for some people they are in the process of dying for a very, very long time, and perhaps the choice is not to live or not, but to choose amongst the various ways of living while dying or to choose amongst the various ways of dying that such decisions necessarily imply.

The third point, I think everybody is aware that this is an extremely delicate and morally complicated problem not only because it's poignant for the people in the circumstances, but because I think we sense that there are Scylla and Charybdis confronting us from the very start.

On the one hand, to treat dementia as by itself a criteria for saying no to life saving interventions is to be in danger of defining a category of persons not worthy of being kept alive, and the Council at the last meeting afterwards had some experience with a culture that came to the conclusion that there were such things as life unworthy of life.

At the same time, on the other side, there is a kind of vitalism which says whenever there is an effective means of interventions intervene, and this would be a vitalism that could, in fact, degrade and dehumanize all in the name of upholding human dignity and human life.

And I think one sails in these waters at great peril, but it seems to me terribly important that we face this question.  If we don't face it, it is certainly going to be faced by individuals and by the community at large, and it begs for a kind of thoughtful analysis of the sort that I think Eric has started us out on.

I've asked several people if they'd like to make comments, and  Rebecca Dresser has agreed to lead off.

PROF. DRESSER:  Thank you, Leon.

I, too, thought this was an extremely impressive paper.  I will make three comments on it and then raise  a couple of questions about the problem of decision making in these patients.

It's tough for me not to talk about policy.  So you'll have to forgive me.  The paper discusses the situation in which there's a loving family or a proxy making decisions for patients, and we have to remember that this does not exist for many patients today, and in the future that will probably be a more common situation. 

So in terms of thinking about how to decide for people with dementia we have to factor in the situation where there is no family intimate, and someone else will be deciding and how should that be approached.

The paper tries to make a clear distinction between a legal rule that would, say, forbid a certain kind of treatment for dementia patients at a certain stage, and a failure to cover that treatment by an insurance policy or a government Medicare policy.

And I agree there's a distinction, but I think in reality so many people are dependent on and will be dependent on Medicare that a government decision not to pay for something is going to be equivalent to a denial of access to a certain kind of treatment for a patient. 

So I think there is a line, but I don't think it's as a practical matter very bright.

And a third point is that in the discussion of why there might be reservations about giving full effect to an individual's past wishes about treatment, the paper doesn't mention another consideration that I think is important, which is when you ask in studies — when people are asked about whether they want their advanced directives to be strictly followed — I need some competition here — people say, "I want my family and my doctors to have some leeway to override my advanced directives."

So another reason for not giving full weight to advanced directives would be the judgment that many people actually want to give their families and doctors some flexibility at the bedside.  so that would be consistent with an autonomy perspective on handling these problems.

Now, a couple hard questions regarding this issue of how and when to treat a supervening illness in a dementia patient.  These are both questions that courts have struggled with.

One is that when you're evaluating the benefits and burdens of different medical approaches, including foregoing treatment, is it appropriate to consider not just the burdens and benefits of the treatment intervention itself?  So, say, it's a feeding tube, you know, the pain involved in putting that in or any restraints that might be necessary if the patient is uncomfortable with the feeding tube.

But is it also appropriate to consider the kind of life that a successful treatment will bring the patient?  So this gets into the quality of life consideration.

A couple of situations that I think present this in a compelling way, these are taken from an article by Nicholas Rango that we read for our April meeting.  He talks about some patients with severe multi-infarct dementia.  For them the very activities of daily living, such as bathing, add considerable pain and exhaustion.  It's often impossible to feed, move or lift such patients without unintentionally tormenting them.

So that might be a case where you would say, well, the very life that treatment could provide is certainly of questionable benefit to the patient.

He also mentions people with advanced Alzheimer's where the condition manifests itself in incorrigible acts of self-mutilation or intractable states of paranoia and hallucinations.  So that's another hard case.

This second question is should this evaluation consider only the benefits and burdens the patient herself can experience.  So that would involve pain, distress, disorientation, those sorts of things, or may it also consider factors that the so-called reasonable person would consider relevant?

So that a good example of that is, say, a patient in a persistent vegetative state.  Now, that patient is not suffering, and that would be also advanced Alzheimer's at the very end stage.  That patient is not experiencing burdens as far as we know because the patient is unconscious.

But the majority of people in this country, at least in surveys, say that they find that a sufficiently undignified existence that they would want their families to have leeway to forego treatment in that situation.

So this notion of dignity that maybe the patient herself is not experiencing should be taken into account, but then how far would that go because many people would say that they find the situation of, say, the person with moderate dementia as undignified.  Would this reasonable person notion of dignity be sufficient to justify nontreatment if that's what the family wants in that sort of a case?

So it's this difference between subjective burdens and burdens that others in the society might believe in, but the patient herself is not experiencing.  Should both of those be taken into account?

If the latter is taken into the account, how far are we going to go with that?

Thank you.

CHAIRMAN KASS:  Dan Foster, do you want to enter at this point?  No.  Okay.  Thank you.

Robby.

PROF. GEORGE:  One who embraces a utilitarian or other consequentialist approach to ethical decision making need not favor euthanasia or its equivalent, though many utilitarians today do.

Someone who rejects consequentialism won't necessarily reject euthanasia, though it's fair to say that most of the leading opponents of euthanasia among moral philosophers and legal scholars are also opponents of consequentialism and ethics.  And by "consequentialism" here I mean an approach to ethical decision making which recommends as the correct decision the decision which will overall in the long run promise to produce to the net best proportion of benefit to harm.

The key thing to note about this kind of approach to ethical decision making in light of Eric's fine paper  is that it eliminates the distinction in the theory of human action that is central to the classic tradition of medical ethics to which Leon alluded in his opening comments, in which Eric's paper is rooted, namely, the distinction between intending death whether that death is one's own or someone else's death, and whether one intends death as a means or as an end in itself, an end in itself or a means to some other end.  That's on the one side, intending death.

And then on the other side accepting death as a side effect of an action whose object, that is to say, whose aim, goal, justifying point, is something other than death.  The good or the avoidance of some evil, such as the avoidance of pain or the avoidance of bankruptcy or something like that, some evil judged sufficiently weighty to justify accepting death or the shortening of life.

Some classic examples are, one, a soldier who heroically jumps  on a grenade that's been rolled into the camp in a life sacrificing effort to save his buddies.

Second, a patient suffering from a painful condition who takes palliative drugs that he knows will result in his dying sooner than he would otherwise.

And, third, the bombing of legitimate military targets despite the foreseeable harm, perhaps including death, to some innocent noncombatants.

Well, if the distinction makes sense, it's because human life has a kind of value that renders it impossible to weigh and measure in line with the utilitarian or other consequentialist calculus and which makes it wrong ever to say, again, to recall Leon's opening remarks, that this life or that life constitutes "lebensunwertes Leben," life unworthy of being alive.

But human life could be valuable in this sense, intrinsic sense, only because we can't account for all we perceive in life as valuable in instrumental terms.  And, indeed, this belief in the intrinsic value of human life is at the heart of the classic tradition, but it's a belief that has been eyed by many people today and not just by utilitarians.

Well, let me be a little more precise.  What the non-utilitarian deniers deny is that mere biological human life has intrinsic value, and they ascribe to the contrary position the vitalism that Leon has this morning criticized.

What does have intrinsic value according to this competing view is not biological life in itself, but the life of a human being in possession of at least a modicum of self-awareness and intellectual and other mental functioning.  As dementia erodes mental functioning, eventually in some cases destroying even self-awareness in any meaningful sense, the question arises for people who deny the intrinsic value of biological life, do we have a life here with value at all?  Is the severely demented individual a person who has any real interest in life or any real right to life?

And here there's, of course, a very big debate, a very accessible piece of work that in these cases you don't have a person with a right to life, as Ronald Dworkin's 1993 book called Life's Dominion, which lays out a nonutilitarian case for euthanasia.  He argues, for example, might it be rather in the interest of such a human being in this stage to be dead rather than alive and whether or not death can be viewed as being in his interest, may he be killed whether by act or omission for the sake of the broader social interest.

Of course, for those who hold fast to the classic tradition, these are the wrong questions.  There's no class of human beings who are not persons because every human life is intrinsically valuable.  Every human being, even the severely demented, has an interest in and right to life and right and interest in being cared for.

Within the constraints of our resources, all must be cared for with what Eric calls in the paper "loving prudence."  I think that does capture the thought of the tradition very much.

Yet this does not solve every question even in theory.  Now, let me raise some.

First of all, it's not always easy to distinguish between intending death and accepting death as a side effect.  Sure, there are clear cases.  The examples I cited a moment ago are clear cases at least in the tradition's own terms, but some cases simply aren't clear.

This is not always because factual uncertainties or ambiguities attend the cases, though these are certainly capable of generating exquisitely vexing dilemmas.

At the margins and the real problem, there is a certain fuzziness in the criteria by which we distinguish intending from accepting side effects, although I myself employ this distinction as best I can in my own work.  I have to concede that there are points when I find it breaks down.

I can't give you the criteria with the kind of clarity that would enable me to give a very hard and fast answer to a very hard case.  So that's number one.

Beyond this question of criteria, there is an issue about death and what it is.  Now, I have in mind here not the standard debate about the definition of death, though that, of course, is in the background.  In the foreground is the question whether in certain circumstances the omitting of treatment or of certain kinds of treatment so that a patient is, quote, allowed to die constitutes not an intending of death, but a declining to keep a patient in the process of dying indefinitely suspended between life and death.

Is there, in fact, a state of affairs properly described as the process of dying if it can somehow be possible to interrupt that dying by intervention or interrupt death by intervention so that the patient is dying, but is suspended in that dying?

Is the state of affairs described as being suspended between life and death really distinguishable from a state of affairs described simply as being alive, but being in very bad shape as a result of, say, a severe dementia or some other conditions?

If so, then there may be a certain relevance in a very limited set of circumstances, to be sure, to the ordinarily, in my view, irrelevant distinction between acts and omissions.  Perhaps by omitting to intervene in these circumstances we are not intending not that is to say willing death, but it's not clear to me how we can know for sure.

A third matter is the question of the relevance of quality of life considerations to the assessment of accepting death as a side effect in cases such as severe dementia, what Rebecca raised for us.  It's important to note that the classic tradition demands the application of moral norms even in cases in which death is a side effect, and the norm against what the tradition calls direct killing is, therefore, not in issue.

These norms, in general, do not exclude in principle choices that embody a preference for a richer but shorter life to a longer but poorer one, which is why in my judgment it's not accurate or fair to attribute to the tradition the perspective Leon called vitalism.

There is such a thing as vitalism.  There have been people who have embraced that, but I don't think it's fair to say that the tradition is vitalistic that way precisely because it does allow for choices that embody a preference for a richer but shorter life to a longer but poorer one.

The broad sweep of ethics is concerned, according to this tradition, not only with the death we die, but with the life we live, and of course, with a connection between the two.

A brief word in concluding about the familiar distinction that Leon did introduce a moment ago between ordinary and extraordinary means of preserving life, familiar but in some ways obscure.

What does it mean to say that such-and-so means must be employed because they are ordinary and others may be omitted because they are extraordinary.  The trouble with the terminology, in my judgment, is that it virtually invites an inference that has to be wrong, namely, that the moral obligation depends on how fancy or elaborate or newfangled the technology is.

For people who joined me and Eric in affirming the classic tradition of medical ethics, I think the key is to keep the focus on the object of the act, and the question whether death is within or beyond the scope of one's intention and not to try to solve these problems in terms of these categories or ordinary and extraordinary.

Although the answer, alas, will not always be clear, at least in that case I think we're going to be asking the right questions.

CHAIRMAN KASS:  Thank you very much.

Alfonso.

DR. GÓMEZ-LOBO:  This is just a footnote to Robby's wonderful exposition, I think.  I'd like to suggest that we try to keep very clear certain distinctions in the discussion.  For instance, I think it's very important to distinguish between dignity, in the expression human dignity, from dignity as entailed when we speak about undignified condition.  I think they are two radically different things that I mentioned by these expressions because by dignity in the first case, we mean something intrinsic to human beings which demands from us a certain kind of moral response.

And I would reaffirm the idea that a severely incapacitated person, even a person in a vegetative state does retain that dignity.  I mean we have no reason to just dismiss that person because of a certain incapacitation.

Now, undignified in the other sense has more to do precisely with the impediments the person is suffering, and the confusion there may be that someone might say, well, because this is undignified, because the person needs certain kinds of care, et cetera, that therefore, there is no dignity there.

I would not base, for instance, important moral decisions with regard to that person on the fact that the person is in a hospital room full of tubes, et cetera.  People consider that to be undignified, but it may be precisely the way to protect the dignity of that person, that the person be intubated because the person needs it.

So I think it's very important to keep that distinction clear.  The other distinction which seems to me very important is the different senses in which we employ the expression "quality of life."  Why?  Because sometimes poor quality of life or poor imagined prospect of quality of life has been invoked as a reason for lethal intervention.

Now, quality of life may mean incapacitation in which case, again, it may not justify certain interventions.

On the other hand, it is doubtless the case that there may be a medical judgment on quality of life such that, for instance, certain medical interventions may prove to be futile because the condition of the patient is so weak, let's say, that to continue to provide certain forms of treatment and even of care may be in vain and, therefore, in moral terms be rightly considered extraordinary, therefore, not required, not obligatory.

So that was just a couple of suggestions.

CHAIRMAN KASS:  Thank you very much.

Ben Carson.

DR. CARSON:  Obviously, you know, in the field of neurosurgery, dealing with end of life issues is unfortunately a common occurrence, and you know, we see a lot of people who are severely head injured or who have terminal conditions emanating from the brain, and you know, questions come up in terms of how much intervention is necessary.

And you know, one thing that we look at is we never want to torture people, and what is torture?  It's keeping someone who is suffering with no hope of recovery alive.  That is torture, and we have to be ever cognizant of that in these discussions at the same time.  If we ever see a ray of hope of recovery, you know, we're going to pull out every stop possible.

So I think that has relevance in this discussion as well.

CHAIRMAN KASS:  Gil.

PROF. MEILAENDER:  I want to make one comment and then ask a question to see if we can pursue it.

The comment is: this is not really a matter of kind of moral theory, I don't believe, but it still seems to me something to keep in mind always.  With respect to at least some of the sorts of patients that we're talking about here or some of the sorts that Eric's paper takes up, I think it's important to acknowledge in the conversation as we think about them that their presence or being in their presence makes us very uneasy. 

I mean, speaking for myself, I mean, I hold the theories which would suggest that we should never aim at their death.  We should do whatever we can to benefit the life they have.

But there's a part of us, there's a part of me that inevitably wishes they'd go away not because it's such a problem, but because they're one of us.  They show us our future, and they make us very uneasy.

And it seems to me that that tendency, if you agree with me that that's the case, that that suggests a tendency that we need to guard against.  One needs to be conscious of it all the time and take it into account.

So that's the comment.  In other words, with respect to what Ben said, I mean, I'm sure there are circumstances in which you could torture someone.  On the other hand, one might often want to think whether we're quite certain it's the patient who's being tortured or us, and we know, in fact, from studies that doctors aren't any better at dealing with this phenomenon than the rest of us along the way.

So it's important to keep that in mind.

Then the question I wanted to pursue, and since we've got Eric here, I hope we don't just have him sit there, but we do allow him to speak somewhere along the way; the question I'd like to pursue about the paper a little bit, it suggests at several points, and I think it doesn't do more than suggest, it suggests that what we might call the standard sort of categories that the tradition has given us, namely, that you ought never aim at somebody's death, but that there are circumstances in which you don't have to do everything possible to keep someone alive, and we can at least to some degree delimit those circumstances even though they're fuzzy at the edges; it suggests that those categories might be inadequate, and that's the word, I think, that is used a couple of times in the paper, in the circumstances in which we find ourselves.

But I didn't myself find anything in the paper other than the simple assertion explaining to me what that inadequacy might be.  I have thought about those categories on a number of occasions, and I don't myself think they're inadequate, as best I can tell, although it's certainly true, as Robby said, it's hard to know how to apply them sometimes, but that's always true in moral prudence. 

So could we maybe get Eric to say a little bit more about that as a starter, just about in what sense one might suppose these categories are inadequate?

It would help me to think about whether there's some reason that they are.

CHAIRMAN KASS:  Eric.

MR. COHEN:  Well, I think Gil is very right in reminding us that the experience of dementia both for the patient and for the caregiver is not new.  It's not simply a creature of our new medical technologies that have kept people alive.  People have always lived long enough to live through dementia.

David Shenk's book describes this in his opening anecdotes, but there are some things that are new.  A capacity to intervene, even to cure simple things like pneumonia, is somewhat novel, and more profoundly looking ahead, the scale and the number of people that are going to be living with dementia and the place of this in family life is going to be much greater.  It will touch every family in some way.

Now, maybe that doesn't, and I suspect I'm inclined to believe it doesn't actually finally change the ethical analysis; maybe it is more a matter of our uneasiness becoming greater precisely because the number of people who are going to be living with dementia is going to be greater.

But I do think it's at least worth thinking about the question whether when dementia becomes a normal part of family life and when the trajectory of life and the relationship between the generations has changed in a way for everyone, as opposed to this being a kind of rarity where people in the past might have lived to 80 or 90 and suffered decades of demential maybe because they had genes good enough to get them through heart disease or not to have it at all as opposed to Lipitor to keep them going; is there something different that we're facing?

Now, I suspect upon hard reflection that the categories will not prove inadequate, but that said, the challenge of living the categories as a society and choosing the good, acting in a loving and prudent way will be harder.

So maybe simply suggesting their potential inadequacy is a way to actually recover their significance for us even when it seems like it's going to be a very hard road ahead because there will be so many people living with dementia.

CHAIRMAN KASS:  Can we stay on this question that Gil has raised?  Because I think there are other people that want to get on.

Peter, on the same question?

DR. LAWLER:  The big distinction of your paper is what has to be done as a matter of personal ethics and what has to be done as a matter of law.  So Bill Clinton as a matter of personal ethics should have had the bypass operation.  As a matter of law, he didn't have to.

Just like if I have pneumonia, I should take the antibiotics, but as a matter of law in a free country, I don't have to.

But here you have a situation where people are choosing for others, and so the matter of law becomes much more important.  So I'm a little troubled by the idea that society might not pay for treatment for people with moderate or advanced Alzheimer's, although people who want to could choose this, pay for it themselves in loving prudence.

And isn't it true that the only way to resolve this problem and to make sure these decisions aren't made according to some cost benefit analysis is for society, that abstraction, to provide for everyone a situation where decisions are made according to loving prudence?  And how do we do this with a large number of people who are going to be dying in this way or have this sort of situation who don't have someone available to make a choice according to loving prudence?

MR. COHEN:  Well, I think it's an important point.  I think it in a way connects to a fundamental point in question that Robby raised, which is clarifying the distinction between intending death and accepting death, and I think a different way to ask that same question is:  what human goods give us reason to legitimately accept death both as individuals and in the personal situation, and in that abstraction, society?

Now, there are some ones that seem kind of obvious, a sort of heroic diving on the grenade to save other people, although we probably as a society wouldn't tolerate someone — and this is an example of medical ethics — a perfectly healthy person who said, "I want to give all my organs away because that will help other people."

So the puzzling question, I think, in both the personal kind of existential case where families or even doctors or nurses or whoever is left to be the loving proxy has to make these caregiving decisions.  I think the first question always has to be what is best care for this person, and I would say the best care is actually slightly different than best interest.  It denotes the relational dimension of this as opposed to simply trying to discern the patient and what would be best for them.

But I think the puzzle is to try to see what is best care demand and, therefore, what other goods can legitimately be taken into account, and I think that's going to be a puzzling question.  Society can only provide what society can provide, and it can't provide a perfect, ideal situation for everybody.  That's a kind of tragic limitation inherent in being human and inherent in living together in society, it seems to me.

But the question is:  how do we set certain kinds of limits if society has at some point forced us on certain kinds of limits, and I think that's a puzzling question which you put in a forceful way.

CHAIRMAN KASS:  Still on this very same point, Gil, did you want to come back?

PROF. MEILAENDER:  If it's okay.

CHAIRMAN KASS:  Please.

PROF. MEILAENDER:  I think I agree with the answer Eric just gave.  I think we need to fill it out a little bit though just in the terms of the paper itself.

The meaning of best care in terms of the way the paper said it is always to find within that boundary, the boundary being you never intentionally aim to bring about someone's death, and what that means is that in terms of all of these goods that you're talking about if you say to me, "And why don't you want to treat your aged father here?" or something like that, if my answer is to you, "So that he'll die," there's at least a prima facie case for thinking I've transgressed the boundary, and we're not talking about care in that sense any longer, even though I might be a very caring person.

So I think the language of care in terms of the way the paper sorts it out does not correspond to the way we talk about being caring always, and one needs to see that.

CHAIRMAN KASS:  Well, look.  I want to press now from the other side because Eric seems to have retreated from the way in which the paper leaves a kind of dilemma for us.  On the point most at issue in this discussion, namely on the question of whether dementia matters in deciding how to care for persons with dementia, we, meaning he is uncertain.

I'm reading from the penultimate paragraph.  "In short, should we regard a person who is physically dependent on the activities of life for the activities of life differently if they are also mentally unaware?  The presence of the body is too real to deny the presence of the person, but the loss of the soul, the memory, and the possibility of mutual recognition, this is too real to deny the loss of something profound about the demented self.  Whether this loss means the person is more ready to die or whether it means that the caregiver has a special obligation to care, an obligation to dance both parts of the dance, we are torn."

Now, that seems to suggest that there's a real question about whether the presence of dementia is or is not relevant to thinking about the choice before us.  Now, I think that the attempt to force this question into are you choosing death or not, as Robby has indicated, is in a way a natural temptation, but I'm not sure that it is phenomenologicly correct to describe that that's the choice that's being made.

PROF. GEORGE:  If I could just come in briefly to interrupt you on that, the way I was trying to conceptualize the matter was to just assume, because I think it's a very reasonable assumption in many cases, that we've gotten past the question of whether we're intending death or accepting death here.

CHAIRMAN KASS:  Right.

PROF. GEORGE:  And that the real issue that becomes interesting now is, okay, we now need to focus on what are the norms that apply in the case of accepting bad side effects, and those are norms that have been thought about, but have to be thought about more all the time when it comes to circumstances where you're not intending the deaths of noncombatants, but you have to consider whether this or that action which is going to result in deaths and injuries to a lot of noncombatants are fair to them.

CHAIRMAN KASS:  But look.  I do think that maybe I'm wrong in thinking that the circumstance before us is one for which the tradition hasn't really, you know, come to grips with those examples I'm not sure hold.  It does seem to me that with the kind of knowledge that we have about the trajectory of, let's say, advanced Alzheimer's, that it might be proper to describe the decision to intervene or not as a decision about either how to live while being in the process of dying or which kind of path to death one would prefer.

And Eric gives us in the middle of the paper an example of a person in the early stages of Alzheimer's who makes a choice to live this way rather than that way and forego even at an early stage a relatively unburdensome intervention, namely, antibiotics, and he raises the question in that case is this person somehow morally obtuse or culpable, or whether one could say this is not a choice.  At least he raises the question:  is that a choice to die or is that a choice not to die in this way, but to say if it be now, let it be now?

Now, I don't want to try to settle the moral question, but it seems to me we should try without the intervention of theory to try to get the feel of what the concrete human situation is and the kinds of choices that are there.  It's not the question of if you forego a certain kind of procedure at, say, an early stage of life that you are — I'm sort of second guessing myself in midstream.

It looks as if at an early stage of life the decision not to treat a pneumonia when one is in perfectly good health or seems to be, you could argue that that's sort of close to a decision in favor of death.

But it's not clear to me that the decision to forego certain kinds of lifesaving interventions for oneself when one is already on the course to die .- I mean, I'm not sure that if I refuse kidney dialysis or refuse some kind of cancer surgery in the midst of my moderate Alzheimer's that I'm somehow opting, that I'm somehow electing to die, and that this is the same as a choice of suicide.

PROF. GEORGE:  Well, at the risk of intruding theory into the problem, I guess at this point without myself trying to resolve the problem in the case that Eric put before us, I guess I'm just saying we should try to keep clear about whether we're trying to figure out whether a particular case falls on this side or that side of the intending accepting side effects divide and that's the appropriate way to analyze this problem, or whether this very same problem, this very same set of facts is properly analyzed not in view of that distinction, but in light of whatever the norms are that apply when we're in the realm of accepting side effects.

And that's not going to be as clear cut.  That will very, very frequently not be as clear cut a proposition.

I think there's a real question.  It might not be your question.  It might not be the question you're putting before us now, although I thought it was, but even if it's not the question that you're putting before us now, I think there is a very real question.  I tried to highlight it in one of my three problem areas, and Rebecca highlighted it, too.

It's a very real question about whether the fact that the person is severely demented should bear and how it should bear on the question whether it's okay to accept death even as a side effect, albeit as a side effect, in these circumstances.  Because the life the person is going to lead is this kind of impoverished life.

DR. KRAUTHAMMER:  I think the real question is whether dementia creates a special case.  We're going to have rules about how you deal with people in the process of death.  How much do you assist it?  How much do you resist it?

The question here is is it different in the case of dementia.  So we have a separate set of questions.

I think the answer is yes.  I think intuitively and empirically if you ask anybody who practices, anybody who has had a parent in these conditions, the answer obviously is yes, and I think there might be some wisdom in trying to understand why most people decide, yes, it is relevant, and it makes you more lenient in welcoming death.

I just want to make one point in answer to what you said, Leon, about the person in early dementia who might decide not to treat a pneumonia.  Are you merely aiding the process of death or are you choosing death or choosing, as you say, to control or change the circumstances under which it happens?

Of course he's choosing death.  I think it's an obfuscation to talk about the process of dying.  There is a very small number of cases in which people are actually in the process of dying.  Otherwise all of us are in the process of dying.  Dementia doesn't put you in the process of dying.  It might slightly accelerate it, but you could have 20 years of dementia. So in what sense is that a terminal illness, except that life is a terminal illness.

So, I mean, it's a way to avoid the question.  I mean, if you have a 20 year old standing on a bridge, he can also argue that we're going to die anyway.  I want to control the circumstances of my death.  So I'm not sure it really helps us to talk about the process of dying.  It creates distinctions which I think are unimportant, except in a very small number of cases in which people actually are within hours or days of the massive organ failure.  the question is:  do you want to accelerate death or choose it instantly or not?

We ought to face it directly and not hide beside, well, we're in the process of dying, and that's a way of fudging the issue. 

If you have a person in the early stages of dementia who forgoes pneumonia treatment, obviously he's saying, "I want to die."  The question ought to be:  ought that be allowed or not?

CHAIRMAN KASS:  Let others get in.  I'll hold.

Paul.

DR. McHUGH:  I do want to get in this discussion, but perhaps at several levels.  The main point, of course, that we're trying to do here as a council is to decide whether the process of thought in bioethics are really a help to doctors and patients who are dealing with these things at this time, and I want to bring us back to that kind of situation, that doctors are, like me and Ben and Dan, are in a lot of times in life.

I suppose I might be the only one in this group who has literally pulled the plug.  I am also probably the only one in the group who has controverted an advanced directive and put a person on life support things that she had explicitly asked me not to do.

I'm probably the only person who has voted at one time for DNR orders and then decided in his department that he wouldn't allow DNR orders to be carried out, and also probably the only person who has opposed the patient that wanted to do just what you said, not had antibiotics, and persuaded her to take the antibiotics when she had an early dementia.

How did all of those things happen to one person?  Well, they happened in part out of the developmental process that goes into building doctors in the way Dan and Ben and I have been built from the beginning.

At first, when I was a person beginning in an internship and all, I wondered why they were making me work so damned hard.  You know, I was up all night and I was tired and all of that, and people kept saying, "Well, you know, you've got to learn what it's like to really be there with the patients, and you've got to be with them all of the time."

And also it was early on in my life when I did pull a plug on somebody who had a total brain destruction, but then afterwards I realized in that situation with that family, that we didn't have enough time together to understand and with the person who I changed the advanced directive policy, it worked out well in the long run because, although she had asked me not to put her on respiratory support, I was in midst of a discussion with her when she had COPD, this obstructive pulmonary disorder, and I was taking care of her for other things.  She suddenly began to slip away, and I just couldn't let her.  I mean, the tide was carrying her out, and I couldn't let her go.  I just had to grab her.  It was just, you know, natural that you brought her back.

By the way, it worked out okay because we got her on the respiratory machine and week or two later we were able to get her off, and then she had about three more weeks in which her family could come from around the country and see her, and we talked about how that happened.

Listen.  I felt bad about all of these situations.  DNR orders, you know, it happened in theory in the medical board of the Johns Hopkins.  Shouldn't we have these DNR orders?

And I said, "Oh, yes."  I was head of the Medical Board at the time.

Then I began to realize that these DNR orders were fundamentally leading to the neglect of the patients.  The residents would come onto the ward and they would say, "Well, who has a DNR order?"   And these people.  "Oh, we don't have to worry about them," and then the patients wouldn't get good nursing and wouldn't get good care and wouldn't get—

So it really comes back to this idea that Peter brought up.  I want medical ethics if it's going to do anything new in bioethics to really help us develop something more than simply the intelligence and skill of doctors to their character and their understanding of situations, and I'm not sure that we're getting to that point very easily if we abstract ourselves from the personal experience of carrying patients along where I want to have available to me from the society all of the tools that I and the family and my understanding of this situation feels are appropriate at this time.

That means not only that I'm thinking about life and death decisions.  I'm also thinking about the psychological states from which these decisions are developing, and often the psychological states are the very psychological states in this situation that I'm dealing with in other situations where death is not at stake.

That woman whom I put on antibiotics, who had early Alzheimer's disease and didn't want it, and had very rational reasons for saying, "Paul, you know what it's going to be like, and I read your book," but she had a very clear depressive disorder that goes along with the conditions that she was suffering from, and I persuaded her to, first of all, take the antidepressants, that we could hold off a little bit on the antibiotics, and persuaded her to see that her decision was being made in this combination of problems of the dementia, the depression, and this other infectious illness.

I want a society that says we need doctors in this situation who have matured over time, who have listened to the philosophical side, who have listened to the scientific side, but ultimately in the art of doctoring express the particularities of this situation and need to have for their power the right to give these treatments as they occur or withdraw them with the understanding of the family there.

In the long run we're going to have to trust that we are building a profession in doctoring that is able to manage these matters and that they are informed by the kinds of things that go into these decisions from philosophers, from scientists, but very much from personal experience.

And so what does this come down to?  In the long run I'm against a lot of rules that become laws because bureaucrats get into this situation.  I want this to be a decision between me, the patient, and the family that they're in, and I don't want somebody else to be saying no or yes.  I've seen that in so many other ways, and they don't belong there, and we ethicists ought to be talking about that side of it.

CHAIRMAN KASS:  Mary Ann, go ahead.

PROF. GLENDON:  Just a question for Paul.

You say you hope and trust that we're building a profession of doctoring that will be able to attend to these new challenges, and it would be, I think, really important and interesting for us to know whether medical education as it exists right now is preparing itself for this new situation, whether existing medical education is up to the challenges that are certainly going to face it.

DR. McHUGH:  One never knows about that about anything, I suppose, in relationship to a profession, even the legal profession.  Is it up to dealing with the problems of autonomy and the like that is occurring now in our country?

But let me just tell you I am a member of an educational program.  Ben is a member of education.  Dan is a member of an education program.  I think we are all in our various ways talking the forming of character as well as the development of skill, and in that process of talking about what character is, we oppose certain policies and explain them in relationship to what we expect doctors to be able to do in a sense in the front line.

I think that in the process of real education it occurs in medicine as it does in other professions in the front line event, in the laboratory, at the bedside, and that's where I think we have wonderful teachers that are informing medical education at the time.  I do.

CHAIRMAN KASS:  Gil.

PROF. MEILAENDER:  Yes, I want to come back to some of the questions you were raising, Leon, to make just a couple of points.

One, it suddenly occurred to me this actually goes back to a slight disagreement we had and I don't even remember what the issue was, an earlier occasion.  You had said before if we could just kind of start with the experience and bracket theory.  I don't want to do that.  I actually don't want to bracket rules entirely either, Paul, although I agree with you that there's no substitute for wise doctors thinking carefully.

But I want theory to be there from the start just in the very simple sense, in the sense of the boundary that Eric's paper established related to the very first thing I said because I think it protects us against certain impulses that are just very near at hand and natural for all of us in some ways.

And so in that minimal sense, I least, I don't want to eliminate theory, but now to the larger question you raised.

The first extended Christian discussion of suicide comes in Book 1 of the City of God, and St. Augustine in his characteristic way takes up all sorts of things, and he discusses whether, in fact, given the fact that he grants at least that one might be baptized and then fall away from the faith and that that would be a terrible thing to have happen; he asked why we shouldn't just baptize people and then dispatch them to heaven immediately before they have a chance to fall away.

And Augustine, as I say, in his typical way he kind of thinks about this and so forth, and concludes that, well, you can't do that because you have to live out the course of this temporal life.  Nonetheless, you can't just jump ahead, in a sense.  You can't seize the occasion to get there.

And I think that in a way that relates to the question you were raising.  I mean, I think Charles is right to say that there's a certain sense in which you could say we're just, I mean, dying from the time we're born.  Actually that's another thing Augustine says.

Even not going that far, you can be terminally ill and live for a very long time in the sense that you can have something that your physician can say, you know, this will kill you in 36 months if a truck doesn't run over you in the meantime.

I mean, I think that's the kind of circumstance you're raising, and what we need to think about is what it is that we're doing, what kind of an action we're undertaking if I say, well, I'll seize the occasion that has presented itself with some supervening illness to die, and it's precisely with that kind of question in mind that I thought that nothing in Eric's good paper demonstrated that the standard categories didn't still apply.

That is to say there are reasons why I might not treat, but they have to be reasons that don't transgress the boundary.  They have to be reasons that have something to do with the fact that this would just be too burdensome a treatment, you know, and I'd rather forego the burdens of it, something like that, but not just seizing the occasion to die.

And it seems to me that's the kind of issue that needs sorting out here somehow.

CHAIRMAN KASS:  Well, let me come back.  Would you like to go first?

Let me respond to Gil.  I'm not sure I can adequately respond to the way Charles put it, but part of the difficulty, I think, with the categories, there is a traditional argument.  You've made it recently again strongly that there are in a way two grounds for foregoing life sustaining treatment.  The treatment itself has to be too burdensome or it has to be inefficacious.

We're here talking about interventions that are presumably efficacious, else they wouldn't be recommended.  So that particular criteria falls.

And the doctrine of burden is one that Rebecca's comment actually invited us to lift up to view.

You, I think, take a very narrow view of what the burden is, namely, well, open heart surgery or coronary bypass surgery in an 85 year old person with advanced dementia or with terminal cancer, even if it could produce a few extra months of life, would seem to be a great burden.

But your way of thinking about it doesn't regard the way of life for which you were rescuing such a person as itself burdensome.  That doctrine doesn't embrace that particular view.  And I think there's good reason for thinking in those terms because the alternative seems to say, "I turn my back on that kind of a life.  Therefore, I am electing better to be dead than to live in that way, and that I think is the way Charles heard what I had to say.

But it does seem to me that with various kinds of interventions we are very often choosing which way we want to live the rest of our lives as we are on our path toward death.  I don't mean in the specific sense in the immediate process of dying.

If my physician tells me — and I have a strong family history of Alzheimer's disease — and the tells me, "Leon, get your cholesterol down," and I'm telling him, "You know what you're doing?  If you have your way with me, you're going to save me for 15 years of a miserable disease."

Now, my physician finally persuaded me, especially when it turned out that the drug actually is alleged to have certain kinds of minimal effects in retarding the possibility of vascular contributions to dementia and the like, but we're making these kinds of choices.  We are in a way making choices about the way we are going to be living.

And I'm not sure.  I'm not sure that the intuition that a condition of advanced dementia doesn't somehow enter into a decision about which way we choose to live out the rest of our time.

I'm not sure I'm doing this precisely enough, and I'm open to complaint, but I think the intuition that we have is not simply that this is disgusting or repulsive, but that these are not simply choices to die now, but choices to live this way rather than that end.  If the time be now, let it be now, but we're not electing that exactly.

PROF. MEILAENDER:  If I may say just a word to that, I mean, in that formulation I do not disagree at all with the formulation.  Now, how we sort it out is important, but just think about a couple of things.

If you say to me, "I want to let my cholesterol ride as high as possible so that I'll die pretty soon," then I'd kind of like as your friend to talk with you about that, whether that's the kind of intention you should form.

If you say, "I want to let my cholesterol ride high because I would rather live five years with french fries than 15 without," I've got no quarrel with that.  I mean, people live in risky ways all the time, and it would be foolish to try to eliminate them.

Now, of course, we can't translate that distinction into law.  I understand that.  We're speaking simply about kind of what's morally wise, but one kind of meaning you might give to the formulation would worry me in a sense, and I'd like to talk about it.  The other would seem to me just perfectly appropriate and nothing wrong with that at all.

Now, to translate it into the language of burden, I jotted down here in your formulation you said, you know, a way of life as itself burdensome, and I mean, I understand the formulation, but if the idea behind the position that Eric sketched with the boundary in place and then with all sorts of latitude within the boundary for different people to make different decisions, if the idea is that you're not supposed to just reject life, but there's nothing wrong with rejecting burdens of treatment and choosing a way of life that's shorter rather than longer, then if you say the burden in this case is the way of life I'm going to have, what exactly is it that you're rejecting?

That's the problem.

PROF. GEORGE:  Leon, can I come in just to ask one question quickly?  Because I think it will bring us right to the point.

Gil, is it okay if my choice to go ahead and eat the french fries is made in view of the fact that I'm looking at 15  years of dementia, if I've got these additional 15 years, where although I love french fries, if I were looking at 15 healthy years rather than 15 demented years I'd forego the french fries?

If that's Leon's question, if it's that really, then I think the tradition can handle it, but is that it?

PROF. MEILAENDER:  Well, that's a twist on it I hadn't been thinking about, but presumably you shouldn't eat french fries just so that you'll die.

PROF. GEORGE:  that's not the question here.  No, that's not the question.  The question is this.  Look.  I love french fries, but if my doctor said, you know, "You've got 15 healthy years ahead of you if you don't eat french fries," all right, I'll give them up.

But the doctor didn't say that.  The doctor said, "Look.  If you give up french fries, you can live 15 more years, but most of those years will be in dementia," now, it seems to me that you wouldn't be violating anything in traditional norms or traditional ethics if you said, "Well, in view of that, I mean, I'd rather eat the french fries not because I'm trying to get dead, but because I prefer the life with french fries, even though shorter, to a longer life without french fries in this demented state."

PROF. MEILAENDER:  Well, I take it that I

agree with that.

CHAIRMAN KASS:  I have Dan,  Peter, Michael, Eric.  Do you want to accumulate? 

Let's give the author privilege and then we'll continue.

MR. COHEN:  It seems, Leon, what you're trying to do is to ask a somewhat different version of Robby's question.  Robby wants to say are we intending death or are we accepting death with a view to other goods.

The question as it has been reframed is:  am I choosing a life that's good by not taking the antibiotic or am I living a life that is morally obtuse?

And it seems if you're going to make the case that you're choosing a life that's good by giving up the antibiotics, you've got to, in the concrete case and in the particulars of it, give the reasons why that's a good life.  Is it because not being treated is a way to be a true blessing to your children?  Yes, it's good for children to learn the lessons of care and to learn how to live well with unchosen obligations, but that's not the only good.

There are other kinds of human flourishing that are at stake here, and we'd be blind to the facts that some of those things may be compromised, given the road ahead that you can foresee.  And so if death has chosen you by giving you pneumonia at this point, your choosing to live a life that is noble till the end as opposed to choosing death is the issue that you're choosing to preserve a certain kind of relationship between parents and children; that something fundamental would be compromised if the adult child is changing the diapers of the demented parent.  Is that what's at issue?

And that your choices for a life that preserves and upholds and ennobles a certain kind of relationship between parents and children, even if it means living that way till the very end, is that what you're choosing is a life of a certain character; that the prospect of losing self-command completely and for a humble person to become demented and a demanding person in the nursing home or for a modest person to make sexual advances or something in the nursing home because it's now beyond your control, and what you're choosing is a life of character even to the very end, I think one can make that case, but then those reasons and arguments can be examined and challenged.

And it seems to me that what looks like nobility may actually be a kind of cowardice, and what looks like trying to be a blessing to the children may actually burden the children in ways that you can't fully foresee.

And so I think dementia does matter, though I think it's often hard to articulate exactly why and why it's different from other disabilities that people endure through life.  And I think perhaps the nobility of not being treated for the sake of others or for the sake of a certain kind of life, my intuition is that that claim perhaps increases as the stage if dementia gets later, but I think that's hard to articulate, and I think the challenge that Gil and Robby and others would put to us is that we need to examine closely the reasons that you would give for saying that this life is good rather than its opposite.

CHAIRMAN KASS:  Dan, Peter and Michael.

DR. FOSTER:  Well, let me just make a couple of unrelated comments to things that have been said. 

First, current practice in medicine.  The duties of a physician have traditionally been defined as three.  I think I may have said this here before.  I don't know, but it won't hurt to hear it again.  I've added one.

I always say that the first duty of a physician is to be competent.  I don't care how kind and loving you are.  If you're not competent you're unethical.  So I add that on.

But the three traditional duties, as you will recall, for the physician are, one, to prevent premature death and to cure disease when that is possible.  Note the term "premature."  Now, how one defines "premature" varies, but it's to prevent premature death and to cure disease when that's possible.

Second, it's to alleviate symptoms when cure is not possible.

And, third, it is to comfort always.  This is the priestly function of the physician, the beneficent function of the physician.

And those rules, in my observation, are pretty common sense.  I think Aquinas, you know, once said that wisdom was what could be commonly known.  And what one sees — and I can only speak to my hospital.  I can't speak to Johns Hopkins, but I suspect it's the same, which is that most of the time physicians, including myself, err, if they err, on the side of treatment and not withdrawal of treatment.

And that's the case with people who have dementia and come in from the nursing home, I mean, and particularly with the young people.  I'll come back to Mary Ann's question about that.  If somebody has a urinary tract infection, which is the most common thing they do, we tend to treat it with antibiotics and send them home, send them back to the nursing home.

So I would say that in my experience oftentimes the error is on treating when one might not have.  That might not be the best thing for the patient, but that's what we do.

The question that Paul raised about the young people in medicine, my view is that they hold to a really rather astonishing way, both to the need for competence, but also for the need for compassion.  One of the paradoxes is the fact that medicine has become not so lucrative these days.  In fact, many physicians, (neurosurgeons, for example, Ben) can't practice because of the malpractice, you know, and we just lost three because the rates were $300,000 a year.

The income of physicians in general has steadily gone down because of the cost of things, and the paradoxical consequence of that is that people who are in medicine are not there primarily for the rewards which are monetary, and therefore, more interested in the rewards for which no payment could be given in terms of gratitude and response and so forth.

So I would say that there are always pirates in any system.  There are pirates in any system that disgrace it, but I'm very optimistic about the young people and find more and more their emphasis on the great things that make it a noble profession.

Now, that may change.

The third thing I want to say just very quickly is that there is a sense in the discussion today and maybe even in Eric's paper a little bit that in some sense death is always a horrible thing, and that what we have to fight above everything else is death.

And I think that's wrong.  We don't talk too much about religious expressions here, but it depends on what you think is the consequence of death.  I mean, all of us fear death, but whether you think it's the most awful thing in the world and, therefore, we must preserve life under any circumstance, even as I said yesterday somebody who  is like a mausoleum, that there's nothing there except to observe the living corpse.  I mean, that's the worst thing.

It's kind of interesting.  I mean, I don't want to bring too much into religion, but just to illustrate, the greatest teacher in the Christian faith was Paul the Apostle, and you know, he at one point says when he's under great distress, he says, "I don't know what to do.  Really I'd rather die and go to be with God, but I'm going to try to stay here to try to help you through this crisis," you see.

I mean, so here one would say that in its highest levels is a very ethical religion.  A person says, "I'm healthy, but I'd rather go," you know.

And conversely, I think I quoted Prakash Desai one time.  I spent a long time as a trustee of the Park Ridge Institute and hung around with people like Richard McCormick and Karen LeBacqz and these ethicists and so forth, and we used to talk all the time about end of life decisions.  This was the day before the courts had decided that you could turn off things.

And we were arguing about this.  We were sort of taking the view that, you know, death really should be fought, Prakash says — I know I've said this at some meeting somewhere here — he said, "You Westerners have it all wrong.  Death is not the opposite of life.  It is the opposite of birth."

"Death is not the opposite of life," he said.  "It is the opposite of birth."  It's a natural thing, and so to elevate this as the greatest enemy seems to me to be a wrong way to look at it, and that we ought to accept death as being natural.

And then if you have a religious faith, that may elevate it.  I remember taking care of the mother of one of our faculty members who was the House Officef at the time.  I carried her through — I think I may have told this, too — I think seven or eight years with breast cancer, and so in the end there was just nothing left.  I mean everything was gone, and she was in the intensive care unit, her family and everybody else.  I said, "I'm going to remove the respirator from her."  If I told this, forgive me.  I can't remember what I said, but when I told her, I said, "Jackie, we're going to turn this off.  We're just going to put you on oxygen here."

And she had been begging me day after day after day, perfectly alert, day after day, and when I did, she looked at me with these bright blue eyes.  They never changed throughout this death struggle.  They never changed, and she winked at me.

I mean, I've taken her off the respirator, and she winks at me.  Now, she was a woman of strong faith, and I'm sure she was saying, "So long.  See you later," you know, I mean in the tradition, but we need to get away from that.

And the final thing, I want to come back to something Peter said a little bit earlier about law.  Even in very sophisticated countries you're going to face the issue — developed countries — you're going to face the issue of resources.  As Eric said, we're going to have to make decisions.

You remember that the United Kingdom made two decisions early on.  They made a decision early on that they would not dialyze patients with renal failure, whereas Medicare did this here in this country, and they doomed 3,000 to 3,500 patients a year, young and old, to death because they said, "We can't afford it."

And if you're rich enough, you could go to the United States and so forth, but they did that.  And they also, you remember, put on at 65 — made it against the law to resuscitate somebody, and you remember on the card it was written "NTBR," not to be resuscitated when you came into the hospital at 65.

Remember the late Malcolm Baldridge said it was quite sobering when he got his 65 year old card to see NTBR.  He didn't know what it meant, and he asked his doctor what it meant.  "Not to be resuscitated."

And he says, "Well, that's quite sobering to the mind, you know, that you can't do that."

So there are rules that are going to probably have to be done, but this was done only — this was not in a great thing like dementia.  It was just for an economic savings that wasn't very great.

And finally, we need to be cautious as everybody said about what's going to hold and what recommendations we make for the future in terms of the Alzheimer's problem, for example.  Science is really moving, moving on this.  I mean, I think that we may be able to not prevent multi-infarct dementia, the dementia of aging and the vascular disease, but you may have been a recent paper in Science in which the idea was that you could immunize against the — remember as you get Alzheimer's, you have this little 4A2 amino acid thing called "the alpha," you know, the amyloid beta peptide.  You know, that's what gives you the plaques, and then the second thing is you get these, you know, neurofibrulatory tangles.  You remember when we had that talk before, but you get that.

Well, it turns out that a trial, a human trial of immunization was stopped because of the possibility that patients might get worse, but on the other hand, in animals it has been clear that if you immunize against the amyloid beta peptide, that the plaques disappear.  And if you get it early, that prevents the tangles from going.

There were four people who died who had participated in the initial trial with immunization from things that were not related to Alzheimer's disease, and at autopsy, it was fascinating.  They had been vaccinated against the amyloid beta peptide, and at autopsies their brains, they had proven Alzheimer's, I mean, so far as you could prove.  Their brain had no amyloid plaques.  They had their neurofibrulatory tangles because it didn't have them before, but what that says is that at least in four humans it was reproduced. 

The scientific paper about rodents and the removal of this, and so we may not — I mean, the one thing that's I think steadily good is science, and I think that we may be able to actually prevent this one of these days.

And so the dementia part of this is important now, but we might do better on it.  In other words, there's an optimism here on my part and many scientists that that's good.

So we had commented on three or four of those things, and I just wanted to make those points as we go ahead.

CHAIRMAN KASS:  Thank you.

Peter and Michael, and then we'll break.

DR. LAWLER:  I can't top what Dan just said, but in our discussion based on Eric's paper, it seems to me we're collapsing distinctions.  Some of the things we have been talking about are, to repeat what I said before, merely ethical and have no legal significance, like whether or not to eat the fries.

And in the same way, the man in the early stages of Alzheimer's who's still clearly competent can choose or not choose treatment as he pleases under the law.  Paul should try to talk him out of it or her out of it, but if he fails, that person dies and that person is not considered to have committed suicide or anything like that.  Any of us can refuse treatment.  That's one distinction.

The second distinction Eric calls to our attention is someone in the mid-stages of Alzheimer's who, say, needs dialysis.  Can society deny dialysis to that person or at least deny paying for dialysis to that person along, say, the British model?  This is a tough question.

Then the third distinction is the person in the final stages of Alzheimer's who cannot choose for him or herself, and there are two questions there.  How should the decisions be made for that person in terms of life sustaining treatment and so forth, but secondly, how should that person be protected under the law?

I agree with Paul and Dan.  The solution in principle is always the philosopher-king-doctor with the loving family, but we don't always have philosopher-king-doctors and loving family, and given that, as Gil pointed out, we still need law.  We still need rules to protect these people to some measure or another.

So in the first case, there's no legal coercion at all involved.  In the second case it's not quite legal coercion, but if you deny payment for treatment, that's pretty close to coercion, and in the third case it's in a certain sense all coercion because a person involved no longer has any choice.

CHAIRMAN KASS:  Michael.

PROF. SANDEL:  I'd like to go back to Charles' and Leon's intuition that dementia makes a difference in deciding whether to withhold treatment, and I'd like to explore the moral force behind that intuition.

At the risk of reconvening the President's Council on Metaphysics, but it has to do with the sentence that Leon highlighted in Eric's paper in that second to the last paragraph, where Eric writes that the loss of the soul, the memory, and the possibility of mutual recognition, this is too real to deny the loss of something profound about the demented self.

That's as close as we've come in this discussion to giving an account of the intuition Charles said he had and that Leon seems to share, that dementia makes a difference.

So that's the key sentence, the key suggestion so far in this discussion.  I would like to sharpen that by putting this as a question to Robby and Gil and Alfonso and whomever else would like to take it up.

Is it possible that the reason dementia matters is that advanced dementia may amount, as Eric suggests, to the loss of the soul, and if not, is that because you think that the death of the body and the departure of the soul are guaranteed to coincide?

PROF. GEORGE:  I think the soul is the substantial form of the body.  So the body is the person.   Death is the death of the person.  It's the physical disintegration of the organism.

DR. FOSTER:  But, Robby, in one sense I make the point all the time, and I've been at the death bed a lot, that there's sort of a sense that we always talk about people leaving, that the breath of life sort of goes, and yet I can transplant the heart.  It works perfectly fine.  I can transplant the kidneys.  I can use the corneas.  The body has not disintegrated.

It has left there, and something is gone.  It works fine.  I mean, you know, this is just plain science.  It has not deteriorated.  There's something beyond the body.

I mean, I'm not one to get into a dualist thing and so forth, but I'm just talking about simple observation that, you know, the person is there and in one breath the person is not there, and it's somber and sobering when you realize that something has gone, but lying there, and in the case of advanced dementia it was lying there before but it was still breathing and so forth.

I mean, I'm uneasy to say that, what you just said, and more inclined to follow what Michael said about this.  I mean, as I say, don't get me into — I don't know about this dualist stuff or triplets stuff and so forth, but that body, it can still generate ATP.  I mean, that heart can last for a long time, well, when transplanted, not a long time; five years.

PROF. GEORGE:  I don't think that the transplantable nature of the organs is going to sustain the proposition that we have integral organic functioning of the body there.  So I don't think that's any evidence that will work for what you had in mind or what Michael has in mind.

DR. FOSTER:  Well, I may not have understood what you had in mind.

PROF. GEORGE:  Yeah, I'm not saying that no organ can be made functional.

DR. KRAUTHAMMER:  As I understand it, Michael's question is you can sell your soul but can you lose it before you die in some other way, apart from selling it.

PROF. GEORGE:  Right.  I mean, I often in answering —

DR. KRAUTHAMMER:  I'm embellishing his question really.

PROF. GEORGE:  Yeah, I don't think I evaded the question, Michael.  Did I?  I mean, you got my answer, didn't you?

PROF. SANDEL:  Which is no.

PROF. GEORGE:  Yes.

CHAIRMAN KASS:  Gil, very quickly if you want since you were challenged, and then we're going to really have to break.

PROF. MEILAENDER:  Well, I'd just say two things.  One, I actually think that the view Dan articulates is one that Christians have often been tempted to and that the tradition that's best has always resisted, namely, that there's some real me separate from the bodily existence.  That's one thing.

And the other that, you know, I can't make any sense out of the notion that there's a living self separate from the living body.  That I could not.  I don't actually think the soul language is very helpful, but if the body dies, the self dies.

CHAIRMAN KASS:  Yes.  Eric, would you like a last word?

MR. COHEN:  Very quickly.  I'm torn in the middle of this argument, but it seems to me you don't say a eulogy for the person in the nursing home even at the very advanced stages of dementia.  And so even though in some ways they may be like a corpse, they're not fully a corpse.

And corpses can, of course, never wink.  At the same time, when you give the eulogy, arguably, you eulogize the person that they were at the best, in the height of their character, and that's a part of their soul.  Whether that's the best language I don't know, but there is something missing in that person, and so it seems to me the answer is both, as unsatisfying as that might be.

CHAIRMAN KASS:  Well, let me come in —

DR. FOSTER:  But when I say something like that, I'm speaking symbolically.  I mean, I know the person is alive.  I'm still going to treat that person, and so forth.  I mean, but I'm talking about symbols here, like what I think you are, too, when you say something is missing.

CHAIRMAN KASS:  Let me commend to people's attention just for further thought Eric buried in a footnote part of an answer to the question of whether dementia should be considered in treating people differently, the footnote on page 5.  I won't read it.

If you believe that it counts, he suggests that you must believe one of those three things, and when we return to this topic, should we do so, I think we really have to think this through, whether these intuitions that some of us have that it counts can be sustained depends, on the bottom of page 15, footnote 5.

I think this is a conversation well launched, but hardly concluded.  Let us break.  Professor Burt is with us.  We look forward to his presentation.

Please try to be prompt.  We'll take 12 minutes.

               (Whereupon, the foregoing matter went off the record at  10:08 a.m. and went back on the record at 10:24 a.m.)

SESSION 6: AGING AND SOCIETY: REFLECTIONS ON POLICY

Robert A. Burt, J.D., Alexander M. Bickel Professor of Law, Yale University

CHAIRMAN KASS:  The last session prior to the public session, and I don't know whether we have any people lined up to speak in the public session.  I assume I — there will be one.  Thank you.

The last session then before public comments is entitled "Aging and Society:  Perspectives on Policy," and it's a special pleasure for me to welcome Bo Burt, Professor, Alexander Bickel Professor of Law at Yale University, who will introduce some reflections on public policy, his work in this field going back to really classic work.  Taking Care of Strangers has really been simply a beacon of light to people in the field.

And it's just a special pleasure for me to welcome you to this Council.  We look forward to your presentation.

PROF. BURT:   Well, thank you, Leon.

I'm really very pleased and honored to be here.  When Leon called to invite me, I accepted in a minute, but I must say I did not have a clear sense of what your deliberations would be like.  So this morning's introduction, I must say if you have been having deliberations at this level of interest and sophistication all the way through, I'm sorry not to have been here a lot more.  This is a wonderful introduction.

And I have to say I was a little dazzled that kind of you winded your way in the end to a discussion of is there a soul, does it exist, what's the relationship between souls and body.  I had not thought that that's what I would find being discussed here, but that's great.

PROF. GEORGE:  That's usual Washington fare.

(Laughter.)

PROF. BURT:   Well, that's exactly what I'm saying.  That's exactly what I'm saying.  But I guess are we within the Beltway still?  I guess so.

So my task is a little more prosaic than discussing the existence or not of the soul.  I don't know how many of you read the letter of invitation that Yuval Levin sent to me, but even if you have read it, I want to begin my presentation by reiterating it so that you see what my assignment was and how daunting it is.

Levin told me that the topic for discussion was the available options and appropriate priorities for public policy in responding to our increasingly aged society, with particular attention, he said, to caring about and caring for the elderly.

But then more specifically he said he wanted me to help you think practically and realistically about public policy.  What are the reasonable goals, he said?  Could I suggest some policy proposals that really could alleviate some of the central concerns and that could have some chance of adoption and, if adopted, some chance of success.

Finally, he said, the challenge is to find a way of doing more than sounding the alarm and to help the Council begin to formulate practical ideas that would not require remaking our society and politics from the ground up.

(Laughter.)

PROF. BURT:   Wow.  And then he ended the letter by saying, "This is a tall order for a presentation, to be sure."  To be sure.

But it seems to me it's a good kind of thing for a council that is kind of poised between discussing the existence of the soul and talking to Washington to be worried about.

So what I'm going to try and do in my presentation, and I gather I have about half an hour, is to offer my suggestions about how you might make this transition from the kind of general principles that you are struggling with and the alarms that need to be sounded, and some concrete, practical kinds of solutions that are more than simply sounding the alarm.

Now, to do that, I want to begin my presentation to step back for a while to identify some broad cultural issues as I see them, which will inevitably frame the ways in which policy proposals will be understood and debated.

So for half of my discussion, the practical bite will not be obvious, I think, but it's important, I believe, to take these cultural issues, as I call them, into account, and there are three specific issues that I want to identify.

The first is what I believe to be a constant element in our social attitude toward aging.  That is the association between aging and death and the aversion that inevitably spills from one to the other.

Now, I don't mean to assert that this aversion always has the same specific gravity, that it always overwhelms other less fearful attitudes, but I do believe that this element is always present to some degree, and that it cannot be banished by, well, in my presentation I say high minded sermonizing, and I'll stick with the word even though I'm about to talk about something, Dr. Foster, that you said a minute ago.

And that is I don't think it can be banished by sermonizing to the effect that death is a natural part of life and should be welcomed in the same spirit that we embrace life itself.  There's a deep truth to that.

But it seems to me as a way of thinking about public policy that this kind of sermonizing at least in our culture is not just unlikely to succeed but actually in itself, I think, is the enemy of sensible policy making.

Now, let me cite two concrete examples about why I believe that is so.  First, as you well know and have discussed, I gather, again yesterday, for the past 20 years or so a sustained campaign has been waged for advanced directives.  Congressional enactment in 1991 of the Patient Right to Self-determination Act was the high point in the effort, and as I am sure many people have told you, this effort has essentially failed.  Only a small proportion of the American population has completed advanced directives, and the empirical data makes clear that even when such directives exist, they are frequently ignored not only by physicians, but more significantly by patients and families themselves.

The premise of this campaign has been that death is an inevitable consequence of living and should be anticipated; that plans should be made in the same rational spirit that guides all important life events.

Notwithstanding the indisputable truth of the premise, the conclusion is passionately resisted by too many people to make the syllogism an adequate guide for public policy.

Now, having said that I don't mean to say that there's no point to advanced directives and that there's not some utility in the exercise of drafting them.  What I mean to say is the enormous investment kind of symbolized in the 1991 congressional act as advanced directives as the key to the problem or an important key to the problem that we're dealing with here about aging and decision making is, I think, a misguided effort as our practice has shown.

Let me offer a second concrete illustration of what I mean by saying that the indisputable premise about the inevitability of death and the enormative posture that it is not something always to be resisted guided public policy in a way that I think is harmful, and that is the Hospice benefit included in Medicare entitlements in 1982.

The Hospice movement, which began in England in the late 1960s and first came to the United States in 1972, has been an enormously important force for the humane treatment of dying people, but its most active proponents have insisted that its underlying premise, as in the campaign for advanced directives, is the naturalness and consequent acceptability of death, and this premise in my view misled these advocates to accept a crucial limitation on eligibility for the Medicare Hospice benefit.  That is, the applicants for the benefit must explicitly acknowledge the inevitability and imminence of their own deaths and must, therefore, forego all curative efforts.

This limitation has drastically undermined the effectiveness of the Medicare Hospice benefit not only in the relatively small proportion of dying people who take advantage of it, some 18 to 22 percent of the population on average, but even more significantly in the short time period between enrollment and death for most of these people.  At the moment, this period between enrollment and death is a median time of less than three weeks, which is not what it should be.

Hospice services are the model, the gold standard for care of dying people, but their frontal assault on aversion to death written into public policy in the Medicare statute is, I think, like the advanced directives campaign, perverse in its impact and fundamentally flawed as a proposition of social psychology.

So the first public policy lesson that I would draw based on my identification of the linkages between aging and death is that the aversion to death should not be frontally assaulted.  The policy should not depend on the success of a campaign to overcome this aversion.

Now, this does not mean that the aversion is irrelevant to shaping public policy or that it is utterly immutable.  It means, as I will try to illustrate as I go forward in what I'm saying, that public policy makers should take account of this aversion and try to ameliorate it by indirect means, one might say by a sneak attack rather than by a heads on confrontation.

Now, there is an equal danger that I want to identify in simply accepting the aversion toward death as an immutable fact of life, and I would not urge that we do this, a danger that is especially pronounced in thinking about public policy to promote caring about and caring for the elderly.  The danger arises because of the tight psychological linkage I suggested between aversion to dying and aversion to elderly people.

The dominant theme of public policy toward the elderly during the past 40 years or so has itself been to wage a frontal assault on this linkage, to insist that the stereotypical view of all or most elderly people as perched at death's door, as frail and fading fast is a gross inaccuracy.

Federal laws enacted in the last 1960s and early 1970s prohibiting compulsory retirement based on age as such was one product of this assault.  The stereotype busting has been the core ethos of the American Association for Retired Persons through most of its history.  As you can see, those of you who are members or see Modern Maturity, again and again, — I mean the most recent issue just came to my house a couple of days ago, and as is always, it has a picture of a lively, vibrant, over 65 year old person who looks sexually active and athletically active and youthful appearing, and this is true.  I mean, she does exist.  They do exist.

And again, I would underscore much good has come from this stereotype busting campaign.  The stereotype is harmful.  It has and can lead to aversive conduct toward the elderly.

But the core commitment toward breaking the culturally perceived linkage between aging and death has had the unfortunate consequence of pushing much public policy, as well as the energetic and effective policy advocacy efforts of the AARP, away from addressing issues about the physical and psychological vulnerabilities that inevitably accompany increased age.

Again, let me just cite one concrete example of this.  Consider the vast proportion of federal research funding administered by the National Institutes of Health devoted to the conquest of disease and death as compared to the minuscule proportion aimed at symptomatic relief of incurable illness or for the care of dying people as such.

A number of years ago I was on an Institute of Medicine committee addressing the care of dying people, and we brought to us in public hearings representatives of the various National Institutes of Health to ask them what kind of research work that they were doing.

And at that time — this was mid-1990s — the only institute within the entire NIH complex that funded any research into pain control — I feel like I should pause and ask you to guess — but believe it or not, the only institute that addressed pain control was the National Institute of Dentistry, as if, you know, pain in cancer and pain in heart, I mean, lungs, you know, was not part of the question there, but they were so committed to cure, these others, so committed to cure, and symptomatic relief was simply not on their agenda.

And even today, the principal source of funding within the NIH complex for care of dying people is the National Institute of Nursing Research, as if care for those who are inevitably dying was not relevant to the mission of other, more generously funded institutes addressing cancer, heart disease, and so forth.

So the lesson I would draw thus far is this.  Ignoring or attempting a frontal assault on the cultural aversion to death are both sure fire formulas for public policy failure, but accepting this aversion as immutable and basing public policy on that acceptance is an equally certain formula for serving the needs of vulnerable elderly people, and vulnerability is now the common characteristic of the American population, as you have said again and again, because our lives have been extended by various innovations and now some 70 percent of us die slowly of progressively encroaching chronic illnesses.

So I suggested a moment ago that the best strategy is to devise indirect means, in effect, sneak attacks for dealing with our culture's aversion to death and its linked evaluation of elderly people.  Here's what I have in mind.

Though aversion to death is a constant undertow in our cultural imagination, it does not always have the same intensity or specific gravity.  The aversion waxes and wanes at different moments in cultural history.

I believe today we are at a high point of intensity for this aversion, and I believe this intensity is the product of at least two relatively recent shifts in cultural attitude, which I think are themselves open to amelioration precisely because they are of recent vintage.

These two recently shifting attitudes that I want to focus my attention on and yours are a loss of faith in the nurturing reliability of traditional denominated caretakers, such as physicians, parents, and adult children, and a diminished belief in the existence of communal bonds in American society of sufficient strength to engender any incentive toward mutual generalized caretaking as one might say of one neighbor toward another.

Now, these are not new cultural themes for Americans.  De Tocqueville, of course, identified these attitudes in the 1830s, a characteristic of our democracy, when he spoke of the interpersonal isolation arising from our ethos of individualism, each American locked in the solitude of his own heart.

De Tocqueville also identified our culturally characteristic counterweight to this loneliness and our shared passion for creating civic associations.  It may be, as Robert Putnam has recently argued, that some of the passion for association building is drained from American life; that we are, as he vividly put it, increasingly bowling alone.

Whether or not Putnam's data accurately depicts this phenomenon, there are several specific data items which, as I read them, clearly demonstrate an intensified isolation from or disbelief in the continued existence of traditional sources of reliable caretaking  for times  of trouble.

Let me set out these data points in quick sketch outline because I believe that once we have seen them and understood their role in increasing aversion to the status of vulnerable old age, we can draw a rough agenda towards  specific items in an ameliorative public policy, and that agenda, as you'll see, will draw in part on de Tocqueville's insight about the virtues of fostering civic association as a self-conscious counterweight to lonely, individualist vulnerability.

So first the data about recent loss of faith in traditionally denominated caretakers.  The most striking single piece of evidence that I would offer you in this quick sketch is the dramatic decline in confidence about physicians.

According to polling data conducted  over the last 40 years, in 1966, well within living memory for lots of us, 73 percent of the American public expressed great confidence in the medical profession.  In 1973, this number had dropped to 44 percent.  By 1993, it was only 22 percent.

Moreover, in 1966, public confidence in physicians had been considerably higher than for other professional groups, including lawyers and political leaders.  By 1973, confidence in these other groups had also fallen from 40 percent with great confidence to 23 percent.

But between 1973 and 1993, poll measures .- and this is the same polling group and the same set of questions and that's why it's useful to get a time snap — in 1993 itself, for the first time since polling on these questions had been instituted by the Roper people in the 1930s, the ratings for physicians dipped below the others, 23 percent for lawyers and politicians, and 22 percent for physicians.  This is the unkindest cut of all, I would say.

But it is in a kind of a nutshell a dramatic demonstration of a shift in public attitude, it seems to me that, deserved or not, the causes of it, whatever they may be, is, I think, a real phenomenon in our cultural attitudes.

And it's not just physicians, but it is physicians, as I say, in conjunction with other traditional caretakers.

Let me give you one other data point, and again, very hastily, but that is the abortion dispute that has convulsed our society since the 1970s.  In the 1960s there was a significant reform movement about restricting abortion laws, but they were very much profession oriented.  That is to say all of the reform movement spoke in terms of changing the criterion that physicians used for deciding whether abortions should be given.

In the late 1960s, suddenly — when you look at to the cultural history, it's really quite striking — suddenly, a new issue emerged as a way to think about abortion, and that is the proposition that this is an issue for a woman's free choice; that the profession should be out of this altogether.

This new agenda, in part, arose from a very powerful mistrust of the physician's judgmental role.  Again, it's a complicated cultural element.  It's tied up with lots of things happening in the late 1960s in our society, but still at its core, it seems to me, a mistrust of the traditional notion that physicians would take care of their patients in the abortion decision was very powerful.

And if you read — I've got to restrain my temptation to do this at length.  So I will — but if you read Roe v. Wade, the opinion, you know, not just the account of the opinion, but Justice Blackmun's opinion for the Supreme Court, it is really an eye opening document to look at.

What Justice Blackmun and six members of the Supreme Court held at its core was not that the issue is a right to a woman's free choice, that that's the central constitutional issue.  Justice Blackmun was very clear.  He reiterated this several times explicitly in his opinion, and he ended by saying what's at stake here is the right of the physician to practice medicine as he sees fit.

And, indeed, it was a gendered observation, too.  He several times talks about the physician and his pregnant patient.  So in its origins actually, this was a kind of bow to the notion of trusting physicians in their caretaking role.

Within five years, the Supreme Court had changed its tune completely.  I heard in the early '80s Justice Blackmun apologize for the way that he wrote the opinion.  He said he didn't get it actually, and only subsequently having proclaimed the right and become a hero of the pro choice forces did he see that, no, the real issue is not to trust physicians.  It's to trust women with their own fate.

But, again, I cite that though to illustrate this dramatic shift in cultural attitudes at a moment in time.  So on the pro choice side, this, you know, is deeply engaged.

Now, on the pro life side, I mean, look at the indictment when committed pro life people look at our society now.  The betrayal by traditional caretakers of the vulnerable fetus, and who has betrayed them?  The judges who, you know, are supposed to do good things.  I mean that was part of what created the right to life movement because of Roe v. Wade.  There was not a movement like this before Roe v. Wade.  It was the sense of abandonment.  How could our judges who are supposed to take care of us do this to us?

And then, of course, mothers.  Mothers, too, were supposed to care for their children.  So on both sides of the debate, and that's the point that I want to make an just leave, this deep but relatively recent mistrust of all kinds of choices of traditional caretakers.

And notwithstanding their deep differences, both pro choice and pro life sides in this debate concur in this proposition.

The second cultural element, the unreliability of communal bonds as a source of mutual support and neighborly caretaking.  Again, as with the status of physicians, there's some illuminating comparative data between the 1960s and today the data is not as self-interpreting as the Roper poll that I