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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


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 cited regarding confidence in physicians, but it's clear enough, it seems to me.

The two data points that I would identify are the passage of Medicare in 1965 and the failure of the Clinton health plan in 1994.  There is a irrefutable logic, I believe, to insurance risk pooling as a way to respond to the prospect of health failure, a logic that is accepted in every Western nation but ours, and accepted for those over 65 by us.

But the key feature in this logic is universality.  You can't have a risk pool composed only of high risk people.  But the endlessly escalating cost of private insurance in the United States is directly responsive to this problem, which universal risk pooling in all of the other developed countries has solved, a principle convincing in American society in the 1960s and embraced by Medicare.

Well, we can speculate about a lot of different reasons, but it was, and I should say, too, that when you look to the history of the Medicare program, its advocates saw this as the beginning of universal health insurance.  Start with the people over 65 and then quickly move, as indeed in the 1970s they did for people with end stage renal disease and also people who were totally disabled and not able to work, but completely disabled.

So the idea of a universal risk pool that everybody was required to join because it came out of taxes is not alien to our culture.  It was embraced, but only partially in the 1960s.

And then came the Clinton health plan that sought to expand this notion to everyone, and it failed.  Now, why did it fail?  Again, let me gallop through.  There are lots of different kinds of explanations.

There are faults in the specifics of the plan, its presentation, but I think that's not the deepest reason.  My own view is that the deepest reason for its failure is that the opponents of any universal plan were able to convince broad swaths of the American public that they had more to lose than to gain by participation in a universal health risk pool; that they would jeopardize some crucially important aspect of the protection they already had.  The advertising campaign talked about you'll lose your choice of a doctor, which is not necessarily so under any plan.  You'll lose something that you have.

You'll be rationed, and then you won't be able to get what you need.

From the logic of risk pooling to the fear that if I enter a risk pool with my neighbors, I will be cheated in some way.  I won't be cared for in the way that I want to be cared for.

It was the salience of this idea, I think, in the early 1990s that defeated the health insurance proposal.  The opponents refuted in my view the irrefutability, which is the logic of the universal risk pool.

Now, at the same time that Americans were turning away from risk pooling as a response to health catastrophes, we were turning to a very different kind of risk pooling and a diametrically opposed conception of community, not as a place for sharing resources, but for accumulating resources at the expense of one's neighbors.

I'm referring here, and I hope you'll see the leap I'm about to quickly make, I'm referring to state lotteries, and ironically enough, in terms of the narrative that I am tracing about the high point in communal solidarity in the early 1960s, the first state lottery in the United States was established in New Hampshire in 1964.  By 1990, as we were turning away from health risk pool, state lotteries had swept the country, now involving some 40 states.

There is one similarity with insurance risk pools on the face of lotteries and one crucial dissimilarity.  The similarity is that everyone is invited to participate in a universal risk pool, that is, we each contribute a fixed dollar sum and willingly run the risk of losing it in order to reap the potential advantage of a huge fortune which promises forever to protect the winner from any vulnerability.

But unlike universal health care, this is a  zero sum game.  One winner means that everyone else loses everything, everything they have contributed, whereas risk pooling against the possibility of adverse health events is not zero sum.  Everyone is a winner.

The person who has contributed but doesn't need to draw on the resources pool is a winner because he has his health and his background reassurance that he would be fully supported if he had not been so lucky, and the participant who draws resources from the pool because he has lost his health is a winner, too, in the sense that he can obtain health care services that he might not be able to afford.

The lottery is anti-communal in every important sense, a testament to the self-serving principle of beggar thy neighbor for one's own advantage.

And then another quick data point.  The Kitty Genovese case in 1964 that I'm sure you all know, it was shocking, but not in the sense that revelations about abuse of Iraqi prisoners in Abu Ghraib is shocking.  The Genovese case, in which, for those of you who might not recall, a woman in the Queens was assaulted in the street some time in the evening, a murderous assault, screaming for help and scores of people, maybe over 20, heard her and did nothing, not even call 911 to come to her aid.

But unlike the response to Abu Ghraib, the Genovese case was not followed by an outpouring of public insistence that the abusers were a few unrepresentative bad apples.  The shock in Genovese's case was a shock of recognition; that this attitude toward obviously and desperately needy neighbors was widespread.  Her trouble is none of my business, and if I make it my business, I will be endangering myself.

And here I find another demonstration of the vulnerability of the communal ethos even at the moment that Medicare itself was just enacted.

So let me summarize my thesis, which already has taken me a little more time than I wanted, and move to the constructive parts.  A summary of the thesis.

Adoption of humane public policy that would care about and care for the elderly is obstructed by fear of death and aversion to the elderly, an unwelcome reminder of the approach of death.

At its core this is ineradicable, but in American society today, this fear is exacerbated by two interlocking and mutually reinforcing cultural attitudes:  loss of faith in traditional caretakers and dramatic attenuation of  communal bonds and neighborly caretaking.

But I think these two attitudes are amenable to self-conscious change efforts.  Now, I don't mean to understate the magnitude of the task that I've identified.  The trust in caretakers and communal caretaking that was sufficiently powerful in the mid-1960s to support Medicaid and also the Great Society commitment to the War on Poverty and also the black Civil Rights Movement was forged in the prior 30 years' experience of the Great Depression and its overcoming, as Roosevelt put it, in the very transcendence of fear itself and also the successful waging of the Second World War, an unambiguously good war, the last such that we have fought.

Nothing like these two events is on the American cultural horizon today, but even so, if we clearly see the targets, the specific cultural attitudes that must be combatted, I believe that there are ameliorative steps that can be taken, some steps that I would propose are larger, more like leaps than others, but the contribution that the Council can make even with these larger and politically less realistic leaps is to describe the cultural context in which smaller steps and larger leaps are necessary predicates for addressing the problem of our aging society.

So let me identify some leaps and then some smaller steps.  The first leap, from the recent Olympic experience, one might call this is the high jump event, the urgent necessity for universal national health insurance.

Medicare works well for the elderly with acute illnesses, but the very existence of Medicare is an indictment of our communal commitment to caretaking for everyone with serious illness.  Medicare is now understood as the exception, whereas the rule in American society is no health care unless you're in some special category.

Now, I believe that if we are to make serious headway in dealing with the problems of caring for and about elderly people in our aging society, we must not limit our attention categorically to them.  We must instead address the caretaking needs and vulnerabilities of everyone in the society and not just the elderly as such because it's precisely, I have argued, this sense in the population at large, if you will, the under 65 population, that we are not a caretaking community that I believe is, in fact, undermining a whole series of specific ameliorative interventions for the elderly as such.

We must recapture the deep cultural convictions that we care for one another as a community and the individualism of our contemporary society, the beggar our neighbor premise, which lies behind, for example, as I've argued state sponsored lotteries, is at war with this commitment.

This individualism obstructs the adoption of more sensitively designed policies even within the Medicare program itself for the special needs of the long term, chronically ill elderly.

I believe the Council has a special role, which it is distinctively situated to play in the current debate about universal health insurance.  The role, first of all, is to identify this underlying cultural link that I have spoke of, the seamlessness of the problem, that the special needs of the elderly cannot be addressed unless we reassert the caretaking character of the entire American community.

And the Council is also uniquely situated to point to one central philosophic proposition that I think is critical in reasserting in the health insurance context the value of communal caretaking, and that is that the commitment must be made in a communal framework.  It cannot properly be understood as a matter of individual choice, as an option which individual members of the community remain free to choose or to reject.

The commitment to communal caretaking must be understood as an obligation, not as an optional choice.  It is an obligation that arises from the fact of membership in a communal relationship.  In our current debate, the current terms of debate about health care policy, the obligatory implications arising from our communal relationship have been almost lost from sight.

Let me cite just one example, current in our politics, and that is contemporary advocates for what are called individual medical savings accounts.  Now, this, of course, is a partisan issue, and I am urging you to take sides on this partisan issue for the reasons that I am sketching.

The advocates for these individual medical savings accounts rest their case on the proposition  that participation in health risk pools should remain matters for individual choice.  Under this proposal, indeed which has been enacted in law in some context, and I will skirt over the details of it, but the core is every individual would receive tax rebates which could then be used to purchase health insurance or not as the individual himself or herself might choose.

As a practical matter, this scheme would almost certainly have the counterproductive effect that people who were at high risk for illness would purchase insurance while people at lower risk would be more inclined to self-insure, that is, to ignore the possibility that they might fall ill and have insufficient resources to respond to that illness, to just rely on their own individual medical savings account.

The basic logic of the insurance risk pooling principle would thus be defeated in practice by these proposals.  The insurance pool would be composed disproportionately of people with high risk of illness, and there would be insufficient resources in the pool to meet their needs without constantly escalating premiums.

Now, the Council is not uniquely situated to make this observation about the problems of the self-selection, but it is uniquely situated, I think, and, therefore, I would say uniquely obligated, to explain the ethical imperative for universal nonvoluntary participation in health care risk pooling.

The ethical imperative arises, as I have suggested, from the interlocking dependencies which comprise all social life and which, in turn, create an obligation of reciprocity, as one might say, from mutual services rendered.  The common refusal to acknowledge our mutual interdependence and the obligations that flow from it is yet another expression, I believe, of our contemporary unwillingness to acknowledge other inevitable vulnerabilities such as aging, declining strength and health and ultimately death itself.

And so I keep coming back to the same basic proposition that if the Council wants to pursue the policy goal of promoting the care of and caring for the elderly, it cannot view this question in isolation from more universally social perceptions of vulnerability, and that's why the need for adoption of universal health insurance is imperative and why the Council, in particular, should speak to the ethical obligations that mandate this course.

Now, if advocacy for universal health insurance is the Olympic high jump, I propose some additional targets which are closer to the ground perhaps, but still not easily within reach.  One might call these the long jump events.

So even restricting one's attention to Medicare to redesign its benefits for services that meet the special needs of the chronically ill, Medicare now works well for specific episodes  of acute illness, but not for chronically incurable states.

Three specific suggestions that I will just quickly toss out.  Talking time between doctor and patient.  I was thinking in terms of your discussion this morning about decision making for dementia patients and their families.  In my own judgment, the crucial step in this is not so much adoption of specific binding rules, but rather structuring occasions and obligations for conversation in an open minded, free kind of way, the conversations that physicians, in particular, should be uniquely suited, uniquely trained and are uniquely looked to to kind of guide and participate in.

But talking time between doctor and patient today is not reimbursed under our existing system at a rate which specifically encourages rather than discourages its occurrence.  We reimburse procedures, action.  Talking is very undervalued and under reimbursed.

Then the service of case managers for expert guidance of patients and their families through the thicket of multiple special services and multiple medications for people with multiple chronic illnesses, again, increasingly characteristic, and case managers, again, to help guide through the thickets of all of these tricky issues that we were discussing this morning.

And then finally, as I have suggested before, redesigning the Hospice benefit by folding it into palliative care programs generally available not only for people who were imminently dying,b ut all people with distressing symptoms that accompanies  any serious or chronic illness.  Support the development within ordinary medical settings not limited to specially segregated settings, such as free standing Hospice services for the growth of palliative care specialization, and the benefit of this fold-in approach in terms of the general perspective I'm offering you is to say if, like the other things I've talked about, should not simply be responsive to death as such and not aimed at the elderly as such, but part of a caretaking commitment to everyone with serious and/or chronic illnesses.

And then some smaller but still big steps directly aimed at restoring confidence in traditional caretakers and reasserting the sense of neighborly caretaking by bolstering private associations in the spirit of de Tocqueville.

So, again, quickly throwing some items out, financial assistance for family caretaking, both direct grants from federal and state government on the premise that families as such are not required, not to mention increasingly not able to provide free or unpaid caretaking services; to embrace as a society the idea that family caretaking is worthy of respect and support in its own right.

Add to this a statutory mandate for employee leave time, for caretaking of seriously ill family members, even, dare one say it, a right to paid leave time, though this may be back to the poll vault.

In exploring this, you can look to the Canadian and Dutch and German examples where there are programs exactly for these kinds of requirements on employers and for paid leave time, and again, as everywhere in what I'm saying, the underlying goal is to bolster the caretaking capacity of families and thereby attempt to ameliorate the loss of faith in traditional caretakers.

And then other kinds of programs.  Let me give you just one example from a program that was funded by the Project on Death in America, which was a project funded by George Soros' Open Society Institute, which I have the great privilege to be a board member of.

The project has just been ended.  Mr. Soros, a great beneficiary, had the nerve to say that it was his money and he wanted to spend it elsewhere, but he did great work and I mean only to tease him, not to complain.

But one of the specific projects that we funded there is most provocative for me in addressing these kind of concerns, was a faith based association set up in Houston, a group that enlisted congregations throughout the Houston area and would simply kind of tour amongst these groups to stimulate them and then help them with technical support to set up kind of extended families within their congregation to care for members of their congregation who had two serious debilitating illnesses:  one, Alzheimer's disease, so directly relevant to your discussion this morning; and, two, people dying with AIDS.

And Project on Death in America supported this program to help kind of implement what they were doing and so that they could serve as a model.  Let me just briefly describe what they did and how it relates to the agenda that I see here.

Essentially, they sent their director who was a minister in the Houston area and members of the staff to congregations, gathered together, and then would ask people in the congregation, "Do you know anybody in your congregation who has Alzheimer's disease?"

And inevitably somebody would say, "You know, I think Ms. Jones.  You know, she's not showing up anymore, and Mr. Jones has stopped showing up, too.  So I think they have Alzheimer's disease."

"Well, why don't you contact them?  And what we want is a team here."  So you would then recruit a team, and here's what the team can do to kind of offer if Mr. Jones is interested in getting the services, to offer kind of family caretaking situations.  You can help shop for them.  You can drop by.  You can sit with them.  You can bring them into activities.  You can free up time for Mr. Jones.

Now, you know, it sounds very prosaic, but in fact, when you hear from this group, just the accumulation of cases that they have and of people within these congregations say, "You know, my gosh, I mean these people disappeared from you.  We never even looked at them, and it's so simple if a group of us in the congregation gets together so that it's not just one of us or just the minister dropping by."

I think as I recall the minimum number of people in the team had to be ten, and then the project would send trainers to say, "Don't just go out there.  We will support you in a variety of ways."

Well, this had a dramatic effect in these various congregations, and it seems to me that this particular project, and if you're interested in pursuing it, I will take you and the staff back to talk to people on the staff of PDA, it should be a kind of model of the kinds of things that I'm talking about.

Here is the creation using the private association that our faith based, which is not the core characteristic, but makes them an available kind of family feeling sense to create new models of caretaking that kind of as it were mimic the older models and touch into people's desire to connect in this way.  Really a quite beautiful program.

And then finally, and here I will stop, there is a different kind of step, and that is the Supreme Court has recently been adjudicating a number of cases under the Americans with Disabilities Act.

I will stop my presentation now because obviously I want this to be open for discussion, but let me just summarize by saying the Court has in a variety of ways, both in statutory interpretation and in constitutional norms, essentially eviscerated the promise of the Americans with Disabilities Act so narrowly interpreted as to restrict its application much, much more than was necessary, and more than that, kind of enunciating constitutional doctrines that threaten to invalidate if the Court carries out the logic of what they have already put on the books, threatens to invalidate the entire act.

And it seems to me that some responsible governmental agency should itself kind of sound the alarm in a vocabulary that the justices themselves could hear and listen to and attend to, but also the members of Congress could see because the Congress has been quite passive in accepting the evisceration over the past eight or nine years that the court has been engaging in.

I won't go through chapter and verse, but this is another area where it seems to me the Americans with Disabilities Act enacted in 1991 was itself a dramatic commitment of caretaking of a generalized sort in our society, and if it were carried through in the spirit that once seemed to be promised, it seemed to me that it, too, would go some distance toward changing these cultural attitudes or at least ameliorating them in ways that would be helpful for the overall goal of the care for and about elderly people.

So I'll stop there.

CHAIRMAN KASS:  Thank you very much.

Michael, do you want to start?  Yes, please.

PROF. SANDEL:  I think this is a terrific paper and really important for what we're trying, for the agenda that we've been wrestling with and not really succeeding in formulating yet.

I want to come back to the agenda, but first to make a brief observation  about an idiom that you use that's different from the one that we've been using in this discussion so far, and it may seem a subtle difference, but I'm not sure that it is.

We've been here discussing our topic as caregiving or the giving of care, and you speak not of caregiving or caregivers, but caretakers or taking care.  And I think this is in line with the underlying substantive message that you have.

For most purposes they may seem synonymous, but they take different prepositions grammatically.  Giving care to or taking care of, and in the different prepositions I think there is at least suggested a different way of conceiving the subject matter.

When we speak of giving care to someone, we think of that activity as dispensing a good, whereas when we speak of taking care of someone, we're more inclined to think of the activity as participating in a practice, and so I think we should at least attend to the revised idiom that you've offered us in describing our subject matter.

Now, that connects to the suggestion you make for our agenda, and here, as we've been wrestling or the question of whether we even have a question here, and I think we were groping and maybe even floundering yesterday to try to articulate what the question was, and a number of us remain very skeptical whether we had a working question that we could really make — we, as this group — make a contribution to.

And part of the problem we were wrestling with was we didn't want to conceive our topic in strictly economic terms.  And Mary Ann Glendon emphasized this very well in her paper and in her comments.  We wanted to also attend to the cultural and moral and the spiritual dimensions of the problem, but what we haven't yet succeeded in doing is drawing a link between the economic dimensions and the cultural dimensions of the problem.

Your paper offers an example. I think the first actual powerful example we have had so far, of one way of drawing the link between a certain interpretation of the cultural predicament and actual economic and policy implications.

Now, there may be those who disagree with the policy implications or disagree with the link that you've drawn between the cultural diagnosis and the policy prescriptions, but I think that way of casting the problem is a way that could give us an agenda and a set of questions that would be workable, and so people could agree or disagree that there is an underlying cultural link, as you suggest, between the aversion to death and, therefore, the difficulties of caretaking for the elderly in an aging population, a link between that and the caretaking character of the entire community which you would address through universal health insurance.

But I think we should take that suggestion, and here I address my observation not just to Professor Burt but to the group.  I think one way we can actually give some content and significance and concreteness to this topic is to take the suggestion of not removing from the agenda beforehand any discussion of universal national health insurance or the individual medical savings account question, which as Professor Burt points out,  is politically controversial and so on, but I think we would make a mistake if we want to do this seriously to say, "Well, because these things are politically controversial, we as a Bioethics Commission must not touch them."

CHAIRMAN KASS:  Let me go next, if I might.

And since I had the benefit of an advanced draft of the paper, which has been modified some, this is slightly prepared, but I think you do us a very great service by offering us a preface to the particular policy proposals, a kind of rich analysis of the roots of this problem, not only to remind us that we may be facing a difficulty that's tied to a kind of aversion to the elderly and infirm rooted in the fear of death, but tying this to these two other cultural phenomena that you claim are more recent, the loss of faith in traditional caregivers and the weakening of the communal bonds in our society.

How accurate fully that is I don't know, but it at least gives us a kind of broader picture, and I like the suggestion, at least I like to think about the suggestion of whether one could avoid the confrontation directly with the first and try to deal with the problem by this indirect means that you suggest.

But, first of all, I'm not sure that we could talk about the communal bonds that we care about and what are in a way manifest in that Houston experiment by measuring it in terms of the passage of governmental programs at a federal level, particularly when the kind of erosion of communal bonds that we're talking about and are, in fact, important to de Tocqueville are not the communal bonds that are substituted for by large  public affirmations at the federal level.

De Tocqueville points to civic institutions and argues that they work precisely because they're not institutions of government, but because they are voluntary associations of civil society, and he worries that putting government in charge of dealing with a problem tends to make people less inclined to see it as their problem, not more.

Generally, it seems to me not necessarily true that we think of government programs as something that we do because we should, but rather as a way to have problems taken care of by others.

And as a small note, later on when you talk in the passage about the reason to provide assistance to families, you say that this should be offered, quote, on the premise that families, as such, are not required, not to mention are increasingly not able, to provide free or unpaid caretaking services.

Well, if the public policy encourages the view that the families are not obliged to provide care for family members without pay, that seems to sort of sap the underlying principle or premise of familial and communal feeling.  I like the proposal.  I like the proposal, and if you said it's because families are increasingly not able to do so, I would be fine.

But if you begin to say the reason that we want to have federal programs is because it's no part of the understanding of the family to do this without remuneration, then in some ways you are beginning to undermine some of the family feeling that you are, in fact, trying to shore up at the very same time.

Yeah, I mean, I'm opposed to the lottery, but I'm not sure that the analogy is correct about pooling risk.

Finally, one further question.  It comes to a part of the paper that you shortchange in the interest of time at the end.  Part of your critique of what the Supreme Court has done to the Americans with Disability Act tends to imply that the elderly are not somehow subject to stigma, and yet what you were trying to suggest at the beginning was that we don't want to emphasize in our communal discourse the stigma that attaches to being old.  We want, in fact, to try to do an end run around confronting that.

And yet here you want the elderly and infirm declared as a kind of special class for special kinds of privileges under that notion, and I'm not sure whether that doesn't constitute a kind of frontal assault rather than a kind of indirect one.

So the minor steps, I think, are appropriate.  Whether or not we ought to have an argument in this body about universal health care or not we can talk about.  I am not sure that that particular move, in fact — I think it's a gesture at what looks like communal solidarity.  It may very well be responsible for the development of a kind of attitude that Jim Wilson alluded to yesterday when he compared the different attitudes about who's responsible for taking care of the elderly and infirm, aged.  How many people think it belongs to families?  In the United States, the figure is roughly two-thirds.  In Sweden, roughly 11 percent.

So just some observations and some challenges.

PROF. BURT:   Do you want me to respond?  Because I'd much prefer to have a more general discussion.  I mean, I do have some responses.

CHAIRMAN KASS:  If you'd like to collect and respond, maybe we could do it that way.

Other commentators?  Mary Ann, Gil, Alfonso, Rebecca.

PROF. GLENDON:  First of all, I want to say how grateful I am to Professor Burt.  I've admired his work for many, many years, and thank you very much for coming here today.

You may have overheard the discussion in the earlier session, my question about medical education and Paul McHugh's response:  well, how is legal education doing?

And I think, Professor Burt, that you would probably agree with me in frankly admitting that it takes a long time for legal education to catch up with new problems that our students are going to deal with.

And so my question to the doctors about medical education was really precisely isn't it taking a long time for medical students like law students, like students in our military academies today to catch up with and think about how they are going to have to deal with problems that their predecessors didn't confront, that in fact, are unprecedented in many ways?

And so what I'd be interested in having you comment on, Professor Burt, is whether you think there might be a role for this Council in stimulating attention in the schools that are preparing our caregivers to these new problems.

You mentioned in your presentation that we have some institutions that are designed on the basis of factual assumptions that no longer obtain in society.  That's a chronic problem in law, too.

So maybe this Council is better suited and maybe is uniquely suited to draw attention to the way the factual conditions have changed, and without having answers, at least start the discussion about sensible steps, large and small, that could be taken.

CHAIRMAN KASS:  Do you want to go in the queue, Charles, or in here?  In the queue.

Whenever you feel overwhelmed with a number of things to respond to, just raise your hand and we'll let you have a turn.

I have Gil, Rebecca, Alfonso and Charles.

PROF. MEILAENDER:  I have two questions.  They're very different sorts of questions.  The one has to do with the claim about I think it was the third cultural phenomenon of diminished communal caring, and I may just have faded a bit.  This happens to me sometimes, but I'd like to hear a little more about the evidence for that and something other than Putnam, which I'm not all that persuaded by.

I mean, after all, the very period you're talking about is also the period of the Americans with Disabilities Act, which you're worried about being eviscerated, but what you're worrying about being eviscerated is precisely a gesture toward communal caring.

And I mean, it's sort of the standard refrain in our Cassandra moments, and I'm not always sure I'm persuaded by it, and so I would like to hear a little bit more about that third prong of the case.

And the other one, with respect to the kind of policy leap that you propose in an attempt to kind of hold several things together, the national health care.  The thing that always troubles me about that suggestion is a little different from, I think, what troubles a lot of people who object to it, and it goes back to something that I think actually in part I learned from your work years ago, not work about national health care at all, but you know, in terms of the prepositions that Michael picked up on, you're Taking Care of Strangers had a double entendre in it.

And it is always worrisome, and it seems to me that in a sense some of your own concerns ought to be sympathetic to this; it's always worrisome if a single, very powerful payer who has an interest in conserving costs and, yes, single powerful payer who has an interest in holding down costs and so forth, is the one taking care of because, you know, the other meanings of taking care of, getting them to go away, may kick in at some point.

And I just wonder if you think that's a legitimate worry, that someone sympathetic in some ways to your claim or to your suggestion, but also kind of instructed by some of your other more psychological insights might legitimately get you to think about.

CHAIRMAN KASS:  Rebecca.

PROF. DRESSER:  Well, here's another huge area for you to address.  I think you did a beautiful job of responding to this unreasonable request in the letter.  So thank you.

I liked the point you made about reimbursement for conversation in the medical setting between doctors and patients and families.  I wonder if you've given any thought to the process at the larger level, whether it's a government policy deliberation or deliberation such as ours or in a community, even in a voluntary association, I suppose, about how to work through these different questions, different proposals in a group where people have very different ideas about what is the right thing to do from issues such as universal health insurance to when to pull the plug.

I see that as part of the reason we have all of these problems today.  That is, we have a very difficult time talking among each other in this pluralistic society and reaching some common policies and some agreed upon rules.

So I wonder if you could apply your wisdom to that particular problem.

CHAIRMAN KASS:  Still okay?

Well, since there are two people in the queue, then we'll let you do as you wish, if that's all right.  Alfonso and then Charles.

DR. GÓMEZ-LOBO:  Yeah, I think mine is an easy one in a way.  I was thinking about the notion of risk pool and the idea of having the broadest possible risk pool, and where I would need some illumination, I think, is whether this might restore some sense of avoidance of the fight over limited resources.

Maybe I'll tell you something that some of us have been worried about here, namely, Janet's insistence of the fact that we may be investing a lot of resources in the elderly and those would be resources that don't go to the young.

Now, what worries me about that is that we may lose a sense of equality, for instance, if we refuse to treat, say, people of a certain age.  I was a little bit worried about what Dan said a minute ago, what happened in Britain, and the reason why I'm worried is I ask myself, well, those people were not going to get dialysis or whatever it is.  I wonder what the cost of that is, say, compared to the amount of money the U.K. is spending in military hardware.

Because of course, the question of allocating resources and denying them from people in certain categories is a function of the overall picture of expenditure.

And your idea seems to me very attractive in saying, well, let's not just concentrate on the elderly.  Let's concentrate on everybody and with such a vast, vast risk pool, we may be able to avoid some of these confrontations and age struggles.

CHAIRMAN KASS:  Charles.

DR. KRAUTHAMMER:  Everyone here has begun by thanking you for your presentation.  So I want to thank you particularly for dispelling the canard that this Commission is politically skewed to the right.  I think having a single presentation that takes a whack not only at the Rhenquist court, but also at the central medical proposal of an incumbent President in the midst of a reelection campaign, I think, speaks well for the ecumenism of the Council that calls itself the President's Council.

Now, on substance, you talked about the Kitty Genovese phenomenon writ large, the decline of solidarity.  Now, that may or may not be true, but let's assume it is, and as I understand your proposal, you are proposing universal health insurance as a way to approach or attack that problem.

I wonder if you're comparing this to the supposedly pristine state of solidarity, which existed in de Tocqueville's day and which somehow has declined in the present day or at least has been in decline the last 50 years, it would be strange, I would think, that this decline in solidarity according to your understanding would occur precisely at a time in the last half century in which we have had the most extensive government intervention in care and caring, in the form of Social Security, Medicare, ADA, and I think the most dramatic example is AFDC.

I think there's a very strong school o thought that in fact, the extension of government programs, particularly federal programs into traditional areas of caregiving and caretaking has loosened the bonds of solidarity.  The most classic example is AFDC, where the government essentially has said if you have a child and don't have a husband, I will act as your husband and provide the check.

And we know the disastrous effects it had on the family.  So I would say that while one could argue pro and con the national health insurance, I think it's a serious proposal on the ground of efficiency and other grounds.

To argue on the grounds of it strengthening the bonds of solidarity, I would argue, would be a rather weak argument, given the fact that we have a long history of seeing how those bonds of solidarity in communal caring tend to be reduced when the government steps in as a substitute.

CHAIRMAN KASS:  I think that's enough.  Bill, briefly.

DR. HURLBUT:  I just want to ask you a simple question.  Why do you think — what is your explanation for why we have a greater aversion to the connection of aging and death now?  You implied that, I believe.

Culturally speaking we're at an ebb or a flow.  The positive aversion is increasing, right?  Wouldn't you think it would be the opposite?  I mean, old people now are more functional.  There's so much more cosmetic surgery.

What's going on?

CHAIRMAN KASS:  Please, and do whatever you are comfortable doing.  You're not obliged to deal with all of this.

PROF. BURT:   Not that I want to speak for 45 minutes, but are we going to 12:30 or till 12?

CHAIRMAN KASS:  Just continue.

PROF. BURT:   Well, okay.

CHAIRMAN KASS:  We have a public session scheduled for now, but that may not begin before the time, but it can begin after.

PROF. BURT:   Okay.  This is fine.

So how to respond to all of this?  Several of you have spoken asking for, as it were, more data, more indication of my sense that we are compared to the 1960s.  There is less of a communal bond of the kind that I am speaking to.

I don't mean to speak in absolute terms.  I mean, these are very subtle, as I see it, subtle, but nonetheless significant cultural shifts.  Rebecca Dresser's question about how to deal with the polarized character of our debate about so many issues is, in fact, for me a very important element in my own sense of a difference between when I was a young person in the 1960s and now that speaks to this issue.

But, again, this is soft stuff, you know, but still I want to offer it for consideration.  I remember vividly the days when it was a staple of our political discourse that what we were looking for and what was within grasp in our politics was consensus.  You know, Lyndon Johnson, who turned out to be a very polarizing figure because of the Vietnam War, but he constantly said, you know, my leit motiv, my theme is, Isaiah, let us sit and reason together.

Now, you know, if you look to the way that Lyndon Johnson, in particular, reasoned with people, well, it wasn't exactly volunteerism, but he sure was persuasive.  But it struck a cord in our politics, I think, and in part, I'm thinking back to a kind of insight that Richard Hofstadter had about changing kind of poles in American society between a vision that at base there was a consensus that united us, the melting pot idea, the notion that we were just one person.  We were all Americans, and that that there was kind of a content to that American, which is different from being hyphenated.

And it seems to me there were strengths and there were weaknesses to that.  I mean, the weaknesses were that they shut out, you know, people who either were not of the mainstream or who didn't want to be part of the mainstream, but there was something at the same time very reassuring and more communal to that idea of a single melting pot, the notion of integration and assimilation, you know, the original kind of theme of the Civil Rights Movement that ran up against a series of both resistances on the part of the majority population and a redefinition on the part of lots of folks who had thought that they were interested in joining a mainstream.

And so today my sense is — and, again, I don't want to overstate this, but I think that it's fair to say in Hofstadter's terms that changing as it were styles of thinking about the country, between thinking of the United States as a place where there is a basic consensus as opposed to, as he put it, thinking about the United States in which conflict is really the basic definition of the enterprise, to be sure contained conflict, you know, although it erupted in the Civil War in a way that was not contained, but you know, we're not going to kill one another, but that the job of our polity is to weave its way through polarized positions of people who never really will have a common viewpoint.

And it seems to me, you know, when you look today at the red states and the blue states, for example, that there is more and more a sense that, although it's a spectrum, you know, we are not like Iraq, you know, a deeply divided place, but nonetheless, on that spectrum I think in my lifetime we have moved from a sense that there's something, that what binds us is more powerful than what separates us.

There are certain good things that come from that, but there are problems that come from the sense that there is less that binds us together than that separates us.  And my view is that working out a caring policy for the elderly is one of the down sides of this shift.

But I do think, in response to your question specifically, it is really quite striking, this sense of the decline, that we are members of one community.

Now, having said that, does government intervention — this goes back to Leon's question and others', too — is government intervention the answer to that?

Well, of course, you know, the concerns that you raise just briefly are very powerful.  You know, government intervention is not a cure-all.  Government intervention brings problems of its own.  In terms of a pretense, I'll go back to Lyndon Johnson.  You know, we're all here together, except, you know, we're all here together and it's my view.  You know, we're all together, but I'm the single payer and I decide all of these matters, which takes me to Dr. Gómez-Lobo's observation about the shortcoming of resources that a truly universal health pool can address.

And I agree with you that it can address that, and that's part of my, you know, optimistic thinking.  But having said that, this universal system, depending on how it's administered, raises other kinds of problems that, in fact, deeply can undermine a communal sense.

So, for example, as you mention, when you look to the National Health Service and you see them with rigid categorical exclusions, you know, that somebody is making that devalues, you know, some group of folks, what you have done is taken an issue that is resolved because there's always some way of resolving this question of allocation of resources, but taking a low visibility way because we have no kind of over arching program, bringing it up to very high visibility, which then in turn, you know, is more constraining.

It kind of speaks to the deep communalization.  I mean, you know, people over 65 as far as this policy is concerned, who are still alive and strong in England, don't feel, you know, part of the communal bond.  You know, you get to be 65, and I myself just did, and I signed up for Medicare, you know, kind of a ritual.

But the idea that I would also be signing up or automatically enrolled in you never can have a DNR order, that's a horrifying thought to me and deeply anti-community.

So I would say about a governmental program of universal health insurance or even family support, family caretaking support, the devil is in the details.  There are ways to structure those programs that help to accomplish what I am talking about, and there are ways not.

I do not mean to say that if we had anything, you know, no matter what the structure is, of a universal health insurance that put us all in the same pool, "ah, you know, that's the kind of communal bond that I am talking about," and that would advance us.

I do think, however, that a national embrace of that premise would help to ameliorate depending then on the details of it, how exactly it's structured, how the inevitable question of allocating resources is dealt with, what kind of participation one has.

There are lessons to be drawn, for example, from the Oregon experience in which they tried to do exactly this, to have communal participation in deciding who's in and who's out.  I'm not offering that as a successful model, but it's a learning that one can look to.

But having said that, and let me come specifically, Leon, back to your suggestion about if caretaking becomes paid, that that undermines the ethos, that it simply is in the nature of the relationship, there's no free lunch.

CHAIRMAN KASS:  No, I didn't say that.  I said that if the defense is that the families should not have to do this without paying. 

PROF. BURT:   Yes.

CHAIRMAN KASS:  If they're unable to do it without assistance, that's fine, but again, to say that it's no —

PROF. BURT:   No, I understand.  If you've not paid for it, you don't have to do it.

CHAIRMAN KASS:  Or it's not worth doing.

PROF. BURT:   Yes.

CHAIRMAN KASS:  It's not a noble activity.  I mean, that's the very core of solidarity.

PROF. BURT:   Yes.  No, no, no.  There's no free lunch in these matters.  All of these things, you know, each time you advance toward one principle, you have to worry about the under side coming up.  So I would say with regard to that specific proposal it could have that implication.

On the other hand, it could have the implication that I want, which is to say that we as a society collectively so value this enterprise that we are going to do our best to make it easier for people because we value it together, and we're not just saying everybody is on their own.

And that's the spirit in which I would offer it, and that's the spirit in which I would offer all of these various proposals, but the details are crucial.

So Dr. Krauthammer says AFDC actually destroyed this kind of sense.  Well, the man in the house rule which said, you know, there's a man there, you can't have funding I think was deeply destructive of important communal bonds, but you know, you didn't have to design the welfare system in that way.  And it seems to me there are ways to design it and ways not to design it, but not to have a welfare system and just say, "You know, you're on your own," and clearly you're not arguing that — I mean, I don't think you're arguing that — there are ways to design it and there are ways not.

And let me just see.  Oh, yes, let me respond just briefly to the education issue that Mary Ann Glendon has raised, and I'm sorry she's gone because I wanted to return the compliment about her work.

Education, too, well, what can I say?  I'm an educator.  I clearly believe that education works, and it seems to me right and sensible that you talk to the importance of this being dealt with sensitively in educational settings.

But I will tell you this, too.  In my teaching of these bumptious law students who think they will live forever, I find it very hard to get them to take really seriously a lot of the powerful issues that are raised by aging and disability.

That's not a reason not to try, but, gosh, if success in this matter depends on us reaching and persuading the young, my testimony is, well, then we're in even greater trouble than I think.

So I think I swiftly addressed — oh, except one other thing, and that is Leon's comment on a part of the paper which he read, which I didn't have time to present, the Supreme Court's attitude and the underlying attitude of the American with Disabilities Act, to see the status of being disabled as stigmatizing in this society.

What the Supreme Court is saying increasingly in a number of cases is there's no real stigma here.  And what they fall back on again and again, sometimes explicitly, sometimes implicitly, I mean, everybody knows we can all become disabled and we all die, and so there's no special stigma there, and that means that the Congress' choice to extend some special protections based on stigmatized vulnerability is not adequately grounded in the 14th Amendment as a matter of equal protection and, therefore, they don't have authority to deal with it and, therefore, we have to let states and local communities deal with this matter.

Now, if you say I'm contradicting myself, well, but if we see these things as matters of spectrum, and I began by saying and I repeat, we ignore the stigma at our peril.  The stigma is powerful.  It does exist.  There are frontal assaults on it and there are other kinds of assaults.

My own view is the Congress, having for whatever sets of reasons understood that this has to be seen as a stigmatizing problem, the Supreme Court shouldn't stand in the way of that, but instead kind of applaud it as a reasonable and plausible judgment.

And it seems to me in the terms of the American with Disabilities Act I don't think this is a frontal assault.  Indeed, it's not a frontal assault for the reasons that you actually lay behind your question.

The Americans with Disabilities Act, the central premise is there are wrongful stereotypes here, that, in fact, disabled people are fully able to engage in all kinds of activities, employment particularly, fruitful, productive activities, if only some relatively small, though expensive, reasonable accommodations are made.

So what this is trying to do, I mean, you know, in a sense, it's an assault on the stereotype of the vulnerability and the fearfulness and the aversion, but it's a very sensible way to deal with this because it's not universally true.

So bottom line, none of these things are formulas, but they all are issues of concern that in my judgment governmental programs can if they're designed sensitively, fruitfully, address.

I think that it is a mistake and part of the excessive individualism of our time that a lot of people in a blanket way — and I'm not putting it to any of your comments here — say government is always the problem here.  Any time you have coercive intervention of any sort, through the tax code or in any way, this is just a bad idea.

And I think that's wrong, and I think that's wrong because I do believe in coercion in various circumstances.  I believe in coercion when it is morally grounded on an obligation to do something that you should do, and there are moral obligations here that I think we should speak to.

And that means, you know, do you then force people to accept treatment, do you force families to care for people.  No, no, but do you force people to participate through the tax code?  You know, do you tax them to share their resources for this purpose and not simply national defense?

I say, yes, that kind of coercion seems to me part of what it means to be a member of a community; that it is not simply up to you individually to decide whether you are related to your neighbor in sickness and in health.  You're married to them whether you like it or not.

(Member speaking from an unmicked location.)

PROF. BURT:   Oh, because I think that the aversion to death and dying comes in important part from the process of dying and the fearfulness of the process and then the sense that you'll be left alone and abandoned.  Who's going to take care of you?  Where are your children?  Where are the resources?

You know, it used to be that the family would take care of you.  It used to be you could rely on your physician, but it has become more fearful as these cultural attitudes have changed, I believe.

DR. HURLBUT:  You're saying it's an increase of the individuality.  You don't think it has anything to do with prosperity and the sort of go-go nature of our mania toward having health and sexuality and all of these things?

PROF. BURT:   No, no, but that's the same phenomenon.  That is to say we are so passionately committed always to look young, always to, you know, be pushing the envelope and then just to stop like the one horse shay because if you die that way — you know, in the ethos I want to die on the golf course, you know, at the peak of my health — it means you don't have to face the dependence on others, the vulnerability, the need for others' caretaking, and that's what in my mind cycles back to the  current culture reality that we can't depend on that in ways that we used to, in ways that the family doctor used to be.

If you've got a problem, you go to the doctor, which still works individually, but you know, when you look, you know, in the large at general public attitudes, it has shifted in this way, and that's my explanation for the heightened aversion.

DR. HURLBUT:  So a kind of denial of larger reality is essentially there.

PROF. BURT:   From fear.

DR. HURLBUT:  You know, when we were talking about aging, doing our "Beyond Therapy" report, it was made plain to us that evolution has not favored longevity because reproduction is the key.  Well, now if you put that into the evolved mind, you can also see how the visage of aging would not be the natural impulse of attraction; that younger vibrancy of reproduction would be.

I mean, I don't know quite what I'm trying to say here, except it seems to me there's something going on.  It has been observed that there's an inverse dynamic between preoccupation with sexuality and preoccupation with death historically, and it seems like we are merging at least from a phase of society where we're preoccupied with sexuality and, therefore reproduction.  We seem to be now preoccupied with food as a society.

But death seems to be making its way back as a subject, and maybe we need a dose of reality, a dose of reflection on where life heads beyond its prosperity.

What do you think about that?

PROF. BURT:   Well, you know, I'm as much in favor of reality as the next guy, but I come back though to this idea of there is more attention to death than when the project Death in America got started, but the question is what the quality of it is and how much of it depends on this notion of just, you know, accept it, run with it.

And that goes back to my initial theme, which is I think a frontal assault on that fear is not  a good idea, is not a helpful idea.

CHAIRMAN KASS:  I want to thank you very much for a very stimulating, brave paper, and as  always for the kind of generosity of spirit that you show in the give-and-take with all points of view.  It was a pleasure to have you here.

SESSION : PUBLIC COMMENTS

 

We have one person who has asked to speak in the public session, and if I'd ask Council members simply to stay put, we'll have a public comment from Susan Poland.

Welcome back.

MS. POLAND:  Thank you.

I'm here again speaking just for myself.

In the last six months or so I haven't been here because I've been taking care of my mother who has dementia, and I find it appropriate to talk today about this.

First, I'd just like to say that Alzheimer's is not synonymous with dementia, and dementia is not synonymous with aging.

I'm sorry I've missed so many of the sessions earlier because I think a lot of the stuff I may be saying might be repeating.

Let me start with a vignette.  As you know, I work in bioethics and have been in and around it since 1979, and I had prior experience in law enforcement, giving Miranda which is like informed consent, and having worked in IVF down in Norfolk.

And in May I was with my mother and brother and my sister who were living in Portsmouth, Virginia, taking care of my mother because my sister thought something was wrong and they had picked her up around Christmas time and brought her down there.

We were sitting in the office in Virginia Beach of Tom Pellegrino, the oldest son and head of neurology, and son of Ed Pellegrino whom I also had met when I was down in Norfolk working.  He was being consulted because she had been diagnosed with having a frontal temporal dementia, which is relatively rare.  The statistics are that if you reach 80, you have a one in two chance of getting a dementia or a 39 percent, depending on what you read.  Most of the people who reach that age are women, which I have not heard many gender issues regarding this discussion, but just so you know, there is a lot of gender issues out there around this.

And if you do get dementia, probably 75 percent of those do have Alzheimer's.  The press and the public both think Alzheimer's and dementia are the same thing, and they are not.  You become demented.  It is a process where you have abnormal or absent, i.e., reduced mental functioning which had existed previously.  It's a loss caused by disease or trauma, not by age.  If it was by age, we'd all be demented, and that's not the case.

So given the fact that we're sitting there, the question with Dr. Pellegrino having been diagnosed with this frontal temporal dementia or possibly vascular dementia because she was a heavy smoker since the age of 16, I wanted a more pinpointed diagnosis.  So we were referred to Dr. Pellegrino.

And my brother and my sister, at this point they had put her on Aricept for four weeks, and they were considering whether to put her on Namenda, which had not been proven for this particular dementia.  The diagnosis was probably Pick's, but that could be only diagnosed upon autopsy.

And my brother and my sister were saying no, no, no, no, no, and Dr. Pellegrino was sitting there where he and I — well, he has a medical background; I have a legal background.  We both see eye to eye pretty much on ethics, having been around that for so long.  So the philosopher-king with a caring family scenario that you would probably hope for.

We had asked earlier if she goes on this, how are we going to know that this is working.  Is it subjective or objective?

And he said, "Good question.  We don't know."

My mother said, yes, she felt better on this particular drug, and I felt, yes, let's go ahead with an Namenda.  My brother and sister-in-law felt no.  They were having problems with incontinence, problems due to hallucinations because in this disease with the frontal temporal lobe, it's all black on an MRI, and what happens is the sense work.  So the body is working.  It is sending messages up through the eyes that you're seeing light, but the brain can't translate because it is broken off because of pic bodies.  That's the theory.

She also was having problems with her legs.  This is another issue of bioethics I have no heard you talk about, which is public health issues.  We didn't want her driving because she couldn't control her legs, and therefore, I didn't want to hear about her hitting a bunch of people and killing them like out in California because she hit the wrong pedal or something.

And I understand that the DMVs do test for Alzheimer's, and my mother will score 28, 29 or 30 on the mini mental states, but she cannot hold thoughts in terms of execution.  That is what this whole area of the brain has destroyed, is her ability to follow directions.

And so consequently it's a difference in memory, and the public, I believe, doesn't understand memory.  We all as we age lose the ability to recall.  We're all saying, "What's his name?  What's his face?" and all of that.

And with Alzheimer's you lose the ability of cognition.  You don't know who you are.

Just a couple of weeks ago I was up there with my mother, and I asked her who's in this picture, and she said, "Oh, this is Aunt So-and-so from the '40s," and she has no problem with that.  She cannot remember if you give her a new microwave how to do three-step directions.

And so what I'm trying to say is when we were with Dr. Pellegrino and we had this informed consent problem, it was one I hadn't seen before in the reading or the writing, and since decision making is so central to bioethics, it has to do sort of like advanced directives.  What do you do when the person can't remember they gave consent.  It's not that they're going in and out of capacity, and it's not that they can't comprehend, although that's an issue, too, but what happens when they just can't simply remember?

Regarding the body and the person, in this case the neurologist said, "This person in front of you is no longer your mother.  Her personality has been destroyed."  So she still has a mind.  She still has a body, but no personality.  Is that a person?

And then there's the whole genetics issue.  We were looking at donation, and there's three kinds of donation.  There's donation of the whole body and donation of the parts, of which there are two:  organs or brain.  If you donate the brain, you cannot donate organs and vice versa.  If you donate organs, you cannot donate the brain.

So we would laugh and say, "Ma, Dartmouth doesn't want your body, but Harvard sure wants your brain."

So that was interesting because people say are you afraid about getting this disease, and I said no because I know that the funding at the federal level is going into genetics, and people who have the funding are looking at this link, but we really don't know what's causing this.

So basically my real complaint is that there's not enough out there with education with the public and with the medical profession or, as you said, the legal profession because even as a lawyer — and I was a young lawyer at 35, but not 25 — and even then it wasn't until I went through this that I understood what my co-workers who had people who were doing elderly caregiving were giving up.

And we had considered, you know, would we have my mother live with us, and the chances of that happening where I'm the primary caregiver for our 14 year old daughter and in addition to that the primary breadwinner.  I wasn't going to give up our health insurance because we don't have universal health insurance.  So it wasn't a question of just economic costs.  It was a question of costs for the whole family.

Thank you.

CHAIRMAN KASS:  Thank you very much.  Unless there's any further comments, we should adjourn.

I think one has heard at various times during this meeting a request for continued clarification of the questions under discussion.  Some people are more discontent with the lack of an absolute clear definition than others, but I think we certainly as we go forward would like to have these things more carefully defined.

And I would be very much interested in having oral or written reflections from all of the people who are here, as well as the people who are not here, to whom I will send a written invitation, to supply such comments reflecting on this meeting and the things that we've heard so that we can proceed appropriately.

Thank you all very much for coming.  Thanks again, Professor Burt.

The meeting is adjourned.

(Whereupon, at 12:10 p.m., the meeting was concluded.)


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