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Meeting Transcript
September 8, 2005


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

Francis Fukuyama, Ph.D.
Johns Hopkins University

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, M.D.
Johns Hopkins University School of Medicine


Gilbert C. Meilaender, Ph.D.
Valparaiso University

Diana J. Schaub, Ph.D.
Loyola College



INDEX

WELCOME AND ANNNOUNCEMENTS

CHAIRMAN KASS:  Good morning.  Welcome Council members, welcome members of the public to this, the 21st meeting of the President's Council on Bioethics, the last meeting of our second term, which concludes September 30th of this month.  Recognize the presence of Dick Roblin, the Designated Federal Officer, in whose presence this is a legal meeting.

A couple of matters of personnel.  Since we last met there's been one change in the membership.  Our colleague, Jim Wilson, resigned earlier this year, having served long and well.  I relied on him for his sage advice, his great good sense, especially in the tough times.  I appreciated very much his skepticism about mere speculation, and the attempt to turn speculations into prediction without doing proper research.  I think I speak not only for myself but for all of us in expressing our gratitude for his excellent service and for his wonderful collegiality.

Second, I want to put on the record my own personal gratitude to my friend of longstanding, Dick Roblin, who was our scientific director until he retired last January to be Senior Consultant for scientific matters, but when Yuval was summoned to work in the White House on the Domestic Policy Council, Dick kindly agreed to come forward and serve as the acting Executive Director to steer us through to the end of this term, and my deep gratitude to you, Dick.

The plan for this meeting is simple.  Today we will try to finish old business, and tomorrow we will look forward to the future on the Council's third term.  Our old business is the conclusion of our work on "Ethical Caregiving in Our Aging Society," with special attention to questions of caregiving for persons with dementia.

This is a process in which we've been engaged really since April of 2004.  I was surprised in reviewing things for this meeting, we actually had 17 prior sessions on this topic over the last year and a half.  I won't review all of them, but we've had guest presentations and numerous discussions amongst ourselves on the whole range of topics, and eventually settled on some we thought could be rendered manageable, and about which comments from us might, in fact, be useful.  And since our last meeting, a report has taken shape with heavy lifting by Eric Cohen, who's been spearheading this in the office with assistance from others, notably Adam Schulman in the drafting.  And from Council members, especially Gil, Rebecca, Paul, Dan, and Mary Ann.  You've seen drafts of earlier chapters.  We've had comments.  We are moving towards the final stages of this work, and I'm happy to announce that we scheduled a date for the release of the report on the 29th of September.  And there will be a meeting of the National Press Club in the morning, and a teleconference in the afternoon, where the press that cannot be here will be able to speak with myself and other members of the Council.  And I'll be in touch with you, hoping I can elicit some volunteers to participate in these events.

The plan and purpose for today's meeting is for the Council to, in part, take stock of what we've done and to think about certain kinds of larger residual questions that might occupy us, or someone else going forward.  And at the end of the day, to review the provisional conclusions of our work together.  In between — in order, in fact, to enrich that last discussion — we will have presentations from four invited guests, two from the perspective of caregiving, two from the perspective of public policy, people who have seen an earlier draft of the report, and who will be asked to comment on how what we have done relates to their own activities or the activities about which they are especially interested in, and to offer some suggestions for possible research, and improvement and reform in practices, both in caregiving and in terms of public policy.

In this session, I wanted to flag, at least a few questions that are at least still puzzling to me, and are questions that have come up but that we've not, I think, properly addressed both philosophical and practical individual, and cultural.  And then to highlight one or two of them that I think might pay us to have some discussion about.  And this comes, in part, out of comments from some of you in earlier drafts.

The first two are things that we've had a fair amount of discussion about.  The report has in a way taken a position on these things, so I don't think we should be discussing them at this point, but I don't think we've heard the last word on these matters. 

The first is the general question about how to think about dementia in relation to the human person and the life cycle.  It was, in fact, the subject of our very first meeting in response to a paper by Gil on the subject of dementia and identity.  Is this really one way of being old, or is this affliction, which is though age-dependent, better seen as a disease or an assault on the human person? 

And related to that, the question is, is this a very special kind of disability, especially devastating to human possibility, or is this, however much we might be inclined to think that, rather a paradigmatic case and the foreshadowing of loss of human control all together?  And the report basically has a take on that, but it makes that question still open in some ways for further reflection.  And I think it should be something that we want to continue to ponder.

Second, the report affirms the longstanding distinction in discussing what kinds of treatments are to be regarded as optional, rather than obligatory, makes much of the distinction between the burdens imposed by added treatment and the burdens of the life being cared for.  And that we have affirmed the ethical importance of this distinction for decisions about the uses of life-sustaining technologies.  So it remains somewhat puzzling, at least to some of us, if the burdens that are now accrued to life are in some measure owed to the choices made in previous treatment decisions, like the man who rescues someone from the river who has jumped in to take their lives.  You pull a man out of the river and you somehow have a kind of responsibility for his life thereafter.  And in one of the topics that I do want us to discuss, I think the question of what happens when technology continues to provide new and additional means that are not themselves burdensome, that are not especially risky, that are efficacious.  Can we continue to uphold this distinction which we have at least for the time being rightly upheld.

The two questions that we've touched on; one we've given almost no attention to.  I know it's of great concern, but not to Frank alone, is the resource allocation question.  Mary Ann taking the lead, Janet speaking forcefully on this subject, and quite concerned about the potential inter-generational conflict that proper attention to the care of the elderly might create.  And we talk about the need to set priorities and to balance our obligations, but we haven't taken up the ethical task of doing that.

There is, of course, a political way to settle this question, and it's not clear that ethical reflection is going to be very efficacious in this matter, but it seems to me an ethics council ought to be willing to try.  And a question we've raised from time to time is what do the old owe the young, not just individually but collectively, and how thinking about this in terms of the common good would one speak about what it is that we owe future generations, and more narrowly, are there any limits that could properly be set on expenditures, and care for those at the end of life, either on the basis of age, or on the basis of massiveness of intervention or the like, or is doing that implicitly to declare certain kinds of lives second-class.  It's a tough question.  I'm not sure that work on it will be useful to policymakers, but it does seem to me, if we're going to speak about the conflict amongst the generations, some attempt to articulate the common good along those lines I think would be very welcome.

One topic which is closer to what we've done, and yet we haven't, I think, faced up to this fully: we focused in our ethical analysis largely on decisions to accept or forego life-sustaining treatments for frail patients, especially those with dementia, when they get sick with other problems.  And we have emphasized in this discussion, I think absolutely rightly, the ethical goal to benefit the life that the patient still has, but I think we've all recognized that this is a rather narrow focus of the subject of long-term care for the frail, elderly, and people with dementia.  Those questions are driven by the advent of disease and decisions made in extremis, but they don't touch those questions that we're going to hear something about later today.  They don't touch the questions about taking away driving privileges, putting people in institutions, all of those every day kinds of questions, which are perhaps not the subject for a Council such as this, but certainly at the heart of the obligations and dilemmas of care givers.  And, moreover, that focus on the end of life decisions, while it rightly focuses on the goals of caregiving at the end of life, doesn't really discuss the question about what are the reasonable goals for the end of life all together?  What is a good old age, what is a good death in modern times?  Thomas Cole raised this question for us.  We've had a little discussion on it, but not very much.  And it's not clear to me to what extent this particular question is proper concern that ought to enter into the ethics of caregiving.

Dan and Paul, when they take care of patients who come to them sick don't sort of sit back and try to ask themselves well, what's a good old age, or what's a good death?  They deal with the suffering and the problems that present themselves, but culturally speaking, these questions do inform.  They inform our practice of medicine, and our practice of medicine helps shape the cultural views of what should happen here.

Now with this, I'm going to come to the end and open this for discussion.  It's the special role of the advances in technology that I think deserve more attention than we've paid to it.  Peter and others in their comments have written about this.  We talk about the best available care as an obligation, regardless of disability.  But best available care here and now is not a static matter, and because of the progressive character of medical technology, this standard best care for the person as she or he is now, is always going to be in flux. 

Saving interventions that are today optional at best because they're either burdensome or risky will, as technology advances, likely become increasing safe and routine, so there seems to be a ratcheting effect in what turns out to be not only acceptable, but perhaps even obligatory under the standard of best care. 

Today we say in most of our cases in ethical analysis of best care, we'll say yes to antibiotics in most cases, but no to organ replacement or dialysis.  But what happens if these other things become more proficient in these matters?  Are we really going to be obliged always to say yes to these things, regardless of the condition of life, the people who have it?

If regenerative medicine begins to pay off in  the way in which its prophets are predicting, does that really mean that we're obliged to offer and consider morally obligatory the provision of replacement of organs or replacement tissues if those replacements are not themselves burdensome, and are efficacious?  I know, again, this is not the question that comes up in the clinic, but it is, I think, for people who have taken a stand on the best care standard, have to pay some attention to what the changing technologies do, I think, to our moral thinking about this.  So that's, I think, one question that I would like to pose.  And perhaps we could start with that, and then devote some part of the time to the resource question and the ethics of inter-generational obligation.  Was that too long-winded and not a sufficiently clear question at the end? Do you want that formulated as a question?  We are now more or less collectively agreed that the obligation to seek the best care of the patient, to serve the life the patient now has, is not obligated to introduce treatments that are inefficacious, are excessively burdensome.  Those are optional, and sometimes even should be not foregone.  But what happens when technologies to further and further extend life, and further and further rescue become available, become non-burdensome, if that's the case, and become common?  Can we simply say that we're under a kind of moral imperative to continue, and to continue, and to continue?  Or is there some kind of built-in limit connected with the view of what is a proper end-of-life kind of finitude, or are we constantly on the treadmill or on the escalator going up?  Alfonso.

DR. GÓMEZ-LOBO:  I have no position to solve the problem, but I would like to emphasize some of the problems that you mentioned, particularly the following; that the traditional criteria to distinguish between ordinary and extraordinary means, of course, is the benefit/burden deliberation, but it seems to me that that's precisely what the medical practice tries to achieve.  In other words, more benefit, being more efficacious, and less burdens, less side effects.  You'll correct me if I'm wrong, Dan, but if that's the case, then we're on a collision course here because on the one hand exactly the criteria that are supposed to allow us to figure out when treatment should be stopped are exactly the criteria that are compelling, that are driving forward the medical progress.  So we have a need to step back and re-think the criteria, it seems to me, in ways that are not clear.

Now it's one thing to talk about serving the life of the patient.  Now there there's a possible pitfall, as well, and that's something I think I learned from Gil; namely, that we should not come to the point of thinking that the life itself is the burden because, of course, that puts us into another quandary, so it seems to me that there's a need for conceptual clarification in two areas; one is on re-thinking benefit/burden criteria.  And two, re-thinking the question well, ultimately I didn't want to use this expression but I have to use it, the quality of life issue.  I think that those are exactly the two points where we are facing these problems.

CHAIRMAN KASS:  Gil.

PROFESSOR MEILAENDER:  I'm really going to reply to your question with another one in a way, and I don't know how helpful that is, but I have a hard time thinking about the question in just general terms.  I think about it in the specific instance, but I have a very hard time figuring out kind of what it means in general terms.  Just by hypothesis, if organ replacement became as simple and non-burdensome as getting a shot, your comparison was with antibiotics, it became as simple as that, then why wouldn't you do it?

See, the hypothesis is that technology will make this every bit as helpful and every bit as non-burdensome to the patient as receiving antibiotics.  Okay.  If that were really the case — see, I have some doubts whether that will ever happen — but if that were really the case, then I'm hard-pressed to figure out exactly why one would decline it, except for maybe  some larger questions about it.  I mean, I could see if someone who didn't want organ replacement for other more kind of philosophical reasons.

CHAIRMAN KASS:  See, this ties into one of the larger questions I raised at the beginning, which is to say what is, in a way, the tacit teaching about what it means to have old age, to be part of a life cycle, and what kind of view of a good end of life, as opposed to good end of life care, are we talking about?  And by the way, lest I run afoul of the practitioners who will correct me if I don't correct myself, no one is going to say that organ replacement is going to be like taking a shot.  I mean, this we think would be difficult things, even if you're just squirting in heart muscle cells, which are going to go to... it's going to be much more complicated.  But the general point is that more and more things are going to become easier to do, and relatively less burdensome than they now are.  And if the point is that there's no such thing as enough, because anything which is possible and relatively burden free becomes obligatory, then this particular moral principle, coupled with the technological imperative produces a kind of continual ratcheting up of what it is that we owe, and what it is that is obligatory.  And that seems to be a limitless enterprise, which is very much at odds with notions that you and others around the table have expressed about the shape of the life cycle, the accepting of limits and so on, so I'm wondering whether we can in the long term sustain the kind of moral principle that we have held here. 

I mean, I'm not trying to make it — I can make matters worse by saying, and by the way, what that is that's going to produce 20 years of people with dementia rather than 5 or 10.  I want to treat it without that further complication.  Mary Ann.

PROF. GLENDON: Burdensome not only means burdensome in the physical sense, but also these treatments are likely to be very, very expensive, so I don't see how we can get away from the other question that you raised about allocation of resources.  Our report focuses on one set of problems that are likely to arise in the aging society, but let's not forget that another dimension of the demographic change is a lower birth rate, and children become less and less visible, and their needs become less and less the subject of political attention, so I don't think we can discuss your question without discussing how somehow this debate could be structured so that it won't head toward conflict between the generations, but toward finding ways to expand the pie, to emphasize social solidarity, what the old owe the young, and what the young owe the old.

You're right, politicians may pay no attention to it, but if there's a role for this Council, it certainly is lifting up that dimension of the problem.

CHAIRMAN KASS:  Rebecca.

PROF. DRESSER:  One concern I have is you mentioned the technological imperative, and I think if we can agree that best care does not always mean treatment, and that treatment doesn't have to be given  if it's inefficacious and excessively burdensome.  Then the question becomes well, how do you define that, and there are lots of ways to define that.  And my concern is in our society and medical system, we tend to define it in a more narrow way than I would prefer to define it.  And there's a tendency to think that these emerging technologies ought to be tried on everybody, when one could make a good argument that it really is not efficacious for the patient, and it's excessively burdensome.  Sometimes no one is there to make that case, and so I think one area where we need to work is to enrich this notion of what does it mean to be inefficacious?

I mean, virtually no treatment is 100 percent successful, and so what are the percentages we're talking about in a particular aging population?  What are the success rates, what are the complication rates?  I think in many cases that are good questions about whether using these things are best care for the patient, and that's a way to set some limits on use of these new technologies without getting into age-based rationing, or rationing on the basis of dementia and that sort of approach.

CHAIRMAN KASS:  Dan.

DR. FOSTER:  I want to support a view that Mary Ann has just made about the economic arguments.  This doesn't justify to the aged or — we treat congestive heart failure with about nine drugs today, and you might add there's no question that you live longer if you do this, but the costs are enormous for these drugs, so even in the non-aging or the poor, we have this problem that many physicians are very nervous about.  We have to deal with this every day.  I mean, what percent of improvement do you get from these nine drugs?  It's pretty small.  Same thing for the treatment of cancer.  A big advance from — well, I won't mention any companies.  And what it does, it adds two months to the life of somebody who's got lung cancer and so forth at enormous cost, so I don't see how you can avoid the economic argument.  And it's not immoral to consider the economic argument of the cost.

Look, all we focus on is the United States, the richest nation in the world and so forth.  We make the argument in Africa all the time, we'll give one drug of AIDS, if we can do that at all.  I mean just to give a drug so that a mother doesn't have a kid with AIDS, and we just blithely think that the rest of the world, it's okay for them to have this economic argument and so forth, but it's immoral for us to consider it.  That's just crazy.  There's not enough pie to support everybody in the world, or even in the United States with the optimal treatment for everything, and so I think it's just silly not to look at the fact that most of what we spend for Medicare, for example, is at the end of life.  We spend millions and millions, and billions of dollars to essentially prolong for a short time, or I don't know what a short time is, so I think this is — if you really want to get serious about what to do, we've got to consider the costs of modern medicine.

I mean, if you just take a Levaquin pill for pneumonia, it's $10 a capsule, so you get six pills and that's $60.  Well, I can afford that, or if you're insured I can do that, but many people can't do it, so it's sort of a long-winded answer to say I'm very much concerned about the economic costs of medicine across the board, and that is particularly going to become important in terms of if you're going to try to apply  everything to somebody, let's say whose life is valuable, is not purely vegetative, but does not recognize anybody else and so forth.  I don't see how you can't play those things into the case.

We went through — I think I mentioned this at some council before — medicine did.  When dialysis first became available, the U.K. decided they would not dialyze people, it was too costly.  And as a consequence, about 3,000 or 3,500 patients a year died in the U.K.  Now public pressure made them reverse this, but that was an economic decision.  But I remember a specific case in Dallas where there was a vibrant chair of a big bank in Dallas, and an SMU student at 18, and there was only the resource to dialyze one of those, so you had to make a choice.  Do we do the potential of this 18-year old person, or do we preserve the CEO?  I mean, we don't do that any more, but those kind of issues have to come into play.  And to avoid them in the sense that every life is of equal value, that's a moral principle that's true, but the practical principle of the larger good has to be made by politicians and so forth.  What is the best good you can get out of the thing?  You said it better than I did, but I just want to say that I feel strongly that that has to be taken into consideration.  And I also want to say publicly, I'm sort of embarrassed that the only thing that we think about in the country about the sick, dying, poor, and starving, or even catastrophes, is the United States of America.  And in some sense, I would like to have the President's Council on Bioethics to consider the world.  Are we meeting as the richest and I think finest, I shouldn't say that, but I'm very proud of the country, finest.  I shouldn't say that; that we ought to consider the moral obligations of the world maybe as something that would be — I know you're going to immediately turn to me and say oh do-gooder, you know.

CHAIRMAN KASS:  No one will say that.  I won't  recognize them to say that.  Robby. 

PROF. GEORGE: I want to go back to Leon's question and try to address it head-on.  I can't propose an answer, but to stick with the question in all its difficulty.  Let's imagine that it would be possible fairly easily through the use of easy organ transplantation or other forms of regenerative medicine, to enable people to live to 250, 350.  Is this not what you had in mind, Leon?

CHAIRMAN KASS:  I don't want to turn this into a science fiction question.

PROF. GEORGE: Give me the life span then.  We're talking about 150?

CHAIRMAN KASS:  I wasn't even projecting a particular age.  I was simply saying we've got people now die of organ failure.  One of the promises of regenerative medicine is at least some of those organs that fail can be repaired when they fail.  The way in which you now repair hips, you might be able to repair defective heart muscle, or a kidney.  You might be able to do something about Parkinson's Disease with stem cell research and various other sorts of things.

PROF. GEORGE: We do — I mean, Dr. Carson and others do transplantation now.  Right?

CHAIRMAN KASS:  Right.

PROF. GEORGE: Okay.  So we've got that problem now.  We think we can handle it with the ethical principles that have traditionally been affirmed in medicine for now, so it seems to me what makes your challenge interesting is looking at a situation where we're not simply concerned with heart transplants for 62-year-old people that will enable them to live to 78.  I think the question only becomes interesting if we're talking about forms of regenerative medicine that are going to enable people to live to much older ages, or am I wrong about that?

CHAIRMAN KASS:  Well, let —

DR. FOSTER:  Let me interrupt.  You're not going to make great changes in life expectancies with modification of transplantation or things of that sort.  If you're going to do that, it's going to be manipulation of genes.  As you know, as we've heard here, we know the sirtuins and the genes that are involved in aging.  We know that.  We know the genes are the same in the flies or the slime mold, or in the worms.  You remember that we heard that manipulation of simple genes in the insulin pathway can cause a hermaphroditic worm to live six times the normal pathway, so you could be — if you altered that in humans, I don't that we'd be like the worm, but you could conceivably live to be a Methuselah if you did that, but that's not going to happen with drugs or things of that sort, unless the drugs change the genes, so I just wanted to try to answer that specific question.

I don't think any of the scientists that work on aging and the prevention of aging, think that technical advances like transplant or something like that are going to have a big effect on it, Robby.  I just wanted to interrupt to make that point.

PROF. GEORGE: No, I appreciate that, Dan, and I do remember that being reported to us, but I think that Leon's problem only becomes an interesting problem if we're talking about significant life extension.

CHAIRMAN KASS:  No, let me see if I can help.

PROF. GEORGE: Unless you — then the alternative would be to build-in the problems that I thought you wanted to factor out at least for now in order not to ratchet it up of dementia and other — the extension of life in debilitated circumstances.

CHAIRMAN KASS:  Well, we've talked in here before making use of Osler's remark about pneumonia being the friend of the aged.

PROF. GEORGE: Yes.

CHAIRMAN KASS:  And, in fact, it's in drafts of what we've got here, and there's a question as to whether in that sense the old man has any friends at all, partly thanks, in fact, to the great gifts that have given him a much longer life.  And the question is, is tech — and Dan Callahan, for example, tries to write not by thinking about the lifespan extended to 150 or 200, but think about the decisions now made, and he has — I think Gil will correct me on this — he's got sort of two ways of trying to decide whether something is optional or not, and its use.

One would be to say would you have invented a feeding tube so that you could use it in Terry Schiavo?  If the answer to that is no, it's not obligatory to use it.  And the other one has to do with mourning.  Do you have it?  I don't want you to become a defender of it, but there are two kind of criteria as you try to decide — he's trying to repair to some view of a natural life span, and to say certain kinds of things — we've somehow changed the capacity of us to have a certain shaped life, and it's partly the result of the new choices that technology has produced.

Now if we're already at that kind of stage where those things are questions, and the doctors will tell you those things are questions for them right now, you don't have to imagine a life span to 150 to say what happens when we've got new and additional things which are relatively burden-free physically.  The expense question, I haven't forgotten.  I'm going to bring it back shortly, but bracketing the expense question, how does the teaching benefit the life the patient now has?  Do not somehow set yourself against that life.  How is that going to play out?  Are we're going to have to, in a way, adopt the view that whatever is available and efficacious, and not too burdensome is somehow morally obligatory?   Otherwise you get accused of trying to orchestrate the end of your life, or setting yourself against the life the patient has.  Right now I think the moral categories — this is to underscore Alfonso's point — right now I think the moral categories still work, though people are nervous about it.  And some of the people who are nervous about it run to write living wills because they are afraid they're going to wind up in circumstances that they don't like the life that these benefits will purportedly benefit.  That's, I think, our complication.  Now I don't know if I've helped you or hindered you, but I don't want to put this —

PROF. GEORGE: No, I think you've made me more confused about the question.  If it's essentially the same question we have now in the case of an elderly person whose life can be extended with antibiotics, it's essentially that case, but the number is being increased by an additional 20 or 25 percent because of advances in regenerative medicine, that would be one thing, and it seems to me that it's less of a challenge, at least for people who think that the antibiotics generally ought to be given, which I gather we've as a Council committed ourselves to.  Then it doesn't seem to me to be the kind of big problem that you wanted us to think about.  If you alter it so that we're not talking about a higher percentage of people facing the same challenge that we face with a certain percentage of the people now into the area of life extension, then I think it does become a big problem, in part for reasons that Mary Ann and Dan have already articulated, and not just the economic ones, but also the demographic ones, and that it's going to shift how one leads a life, and our whole understanding of our relationship to our work, to our education, to other generations.

I mean, it's going to have a huge social impact, some of which might reasonably be regarded as so negative as to warrant the judgment that we ought not to make it a project to go into that life extension, to try to accomplish that.  And I think that judgment could be made without violating any of the ethical norms that we've affirmed.  But then that raises, I think, the Callahan problem.

What if it happens anyway, and we do find ourselves in a situation where we face the option of very long lives without great burdens from the means that enable us to extend life in that way.  Could there be a legitimate reason for declining in individual cases the use of those means?  And what I would take to be a legitimate reason in light of the principles lying behind the criteria that we've identified as the ones to be focused on in making life and death decisions, could such decisions be made without the reason for the decisions being the proposition that the life in question was not worth living, a life unworthy of life, and that the person facing the decision, or the surrogate making the decision for the person regards that person as better off dead.  It seems to me there may be.  I have trouble, and here's where I find your question so interesting, I have trouble articulating what that other reason would be in the precise circumstances I've outlined.  But somehow I share your intuition that yes, the decision a person would be making if the person made the decision to decline that care would not necessarily be rooted in his affirmation of the proposition that this life I've got is a Leben unwertes Leben. 

CHAIRMAN KASS:  I think you've captured, in part, the nub of what I'm worried about.  The intuition of  Osler seems to be somehow right, especially if you think there's such a thing as a shape and a terminus.  And the language — we have to find some way to speak about that, I think, without declaring what it is that is offensive and wrong, simply taking the question on your terms.  I think it's a challenge for those of us who have tried to formulate the ethical principles in the way in which we have.  Dan, to this point?

DR. FOSTER:  Yes, to this point.  The practical things, it seems to me — I've tried to argue this in a debate on the volume that's coming out — is that, that the intuitive feeling that you described of Osler said pneumonia is quick and it's a peaceful friend to do that, is a principle I think we ought to hold on to, rather than an absolute continuation of life.

Remember — I don't want to try to get theological here, but remember that the demand to love neighbor as self — let's say in the biblical view.  You remember early in the Hebrew lessons where we were to love God and love neighbor as self, the love for God was absolute, but the love for neighbor was restricted.  It was as self.  You shall love your neighbor as self.  It was not absolute and continuing everything.  It was restricted as self, and I believe that most of us, and certainly those of us who take care of the dying, internists like myself and so forth, or somebody is dealing with dementia, like Paul, intuitively know that they themselves would not like a lot of the things that we do for themselves.  And so one of the things that we need to ask is, if I'm the one lying there vegetatively, and my family is there, would I want them to apply all these things, give me a new organ or anything?  The answer to that is of course not.  Of course not, and so I think that  intuitive sense about this — I mean, I think you've criticized me once about this thing helpfully that we needed even if you're a good-hearted physician, let's say you need moral guidance about what to do, and I think that principle is right, and I'm glad that we're giving moral guidance and so forth, but the intuitive sense about this, the common sense about this seems sometimes to get lost with some devotion to a principle that life always, either in the earliest of phases or in the latest of phases is the highest demand that is made on the moral human, and I believe that's wrong.

CHAIRMAN KASS:  You'll have some takers on this.  Peter was in the queue from before.  I'm not sure people around the table are going to disagree with the last formulation.

PROF. GEORGE: No, what we're going to disagree with is whether that is an accurate account of the position that Dan is, in fact, I think going to criticize since nobody actually, or at least nobody I know actually affirms the vitalism that Dan has there characterized.  Dan obviously has somebody in mind, or some people in mind, who actually advocate a view.  I think we would want to articulate the view we actually hold, and then Dan can take a crack at it.  But what Dan has there criticized is a view I certainly don't hold, and I think others who've defended the positions that I've defended here don't hold it.

DR. FOSTER:  Robby, let me say, I had nobody in mind.  I certainly did not have Robby George in mind, or anything else.  But it can be — sometimes it can be read that way, and all I'm arguing for is a very simple principle; that all of us want to be common sense against the general medical rules that we don't want to have some standard that is unrealistic.  That's all I'm saying.  It was not aimed at anything, and I was just teasing him about telling me that I needed moral guidance.  I need, terribly, moral guidance.

CHAIRMAN KASS:  Peter.  You've been very patient.

PROF. LAWLER:   Robby and Gil, I think, radicalized the question.  Regenerative medicine is highly speculative, especially if it's considered in the full sense of both the rejuvenation of organs and genetic manipulation, so Paul said in his comments on  the report that our lives, the average human life never gets much beyond 80, and when the report speculated otherwise, Paul wrote "No way, Jose."  But that seems to be what distinguishes physicians from scientists, because scientists do hold open the possibility through genetic manipulation, organ rejuvenation that the average human life might get a lot longer, so let's assume, number one, these treatments are not burdensome.  Let's assume, number two, these treatments are not expensive, and we can easily afford it.  Not at first, these problems will exist at first, but as science develops these problems will become less important.  Let's assume that this will absolutely break the life cycle.  Right now our report says thoughts about breaking the life cycle are an exaggeration, but let's say people can live well into three digits.  Safe, reliable, inexpensive treatment. I don't think — what would be the objection to giving it, even if it messed up our lives, or put us into a whole new dimension of human living, which is more or less childless, and requires a wholly new kind of virtue.  I mean, if we can't articulate why we shouldn't do this, why shouldn't we do it?

CHAIRMAN KASS:  Frank, are you going to take this up?  You'll respond to Peter? 

DR. McHUGH:  Right now?

CHAIRMAN KASS:  Not if you don't want to.  I mean, Peter has raised a question, and someone might want to simply have a bit of a response on this formulation of the question.  Go ahead.

DR. FUKUYAMA:  Yes.  Okay.  Well, I do think that it is possible to articulate what a good death is that will help answer this question; which is that a good death is probably one in which you want a few months warning for the preparation, psychological preparation for the family, and then when the end finally comes, all of the systems ought to shut down pretty much simultaneously within a relatively short period.  All right?  And it seems to me the real problem that we've got now is that medicine, whether it's regenerative or organ transplants, or just curing pneumonia is that it keeps some of those systems going, and others it has no effect on, and the whole crisis over Alzheimer's is that we figured out how to keep the body going, but we don't have a similar treatment, and I don't think anyone is going to do brain transplants in any of these futuristic scenarios.  And so I think the general — and this is not an ethical problem, it's just a utilitarian problem — is that most of the kinds of treatment decisions that we're likely to confront are ones that are actually not going to keep all of the systems going simultaneously, but they're going to put people in this debilitated state where the body is going, but the other things are not.  So that's, I think, the general — so it leads to something that is not my definition of what a good death ought to be, so that's just my simple-minded way of looking at it.

CHAIRMAN KASS:  More to Peter on this?  Ben.  Thank you. 

DR. CARSON:  I just want to briefly address a couple of things.  I think, first of all, what Peter was talking about in terms of general prolongation of life, we do have to keep in mind that it does have significant implications in terms of population, and in terms of jobs for the next generation.  I mean, it's not just an issue sitting on the table by itself.  It has many interlocking parts that we have to bear in mind.  But back to what Dan was talking about in terms of the economics.  I resonate very, very strongly with that, because we spend an enormous amount of the percentage of money that we spend in a lifetime in the last months of life trying to prolong people with relatively little benefit, particularly in terms of quality of life. 

At the same time, I think we have to be very, very cognizant that there's a difference between prolongation of life and alleviating suffering.  For instance, one group of patients that I deal with, patients with trigeminal neuralgia, and some of these patients are very elderly and have Alzheimer's disease, have a very difficult time articulating the excruciating pain that they're in.  But there are procedures that we can do that can eliminate that pain.  We should never, I think, hesitate to do those kinds of things in those people, but I think that's a very separate issue from just prolongation of life.

CHAIRMAN KASS:  Paul, sorry.

DR. McHUGH:  This isn't just to address, I guess, Peter's points, although they are important.  I want to come, as well, back to what Dan and Mary Ann said in relationship to the economics of things, and the services that we offer patients, and should ultimately offer all human beings.

I lived with this woman for 46 years who keeps reminding me about the importance of the poor almost every day I wake up, and says you ought to remember the poor.  And if I'm not remembering the poor in Baltimore, she reminds me of the poor in Africa, and there's other places; and so, therefore, I resonate vibrantly with these concerns that we have about what we're doing.

On the other hand, I also am aware, as Dan has expressed, as all doctors of Dan and my age remember, the dialysis issue — I remember John Merrill at the Brigham walking down the hallway planning, because there was no dialysis machine, not enough dialysis machines, and we hadn't yet gotten to this kidney transplant, to shut the machine off on a young man at age 18, and his head was down, and it was really awful.  But we have expanded that, and the economics now of doing dialysis has become less and less because of our capacity to concern ourselves with extending the care of those patients.  So the economic burden, the one, by the way, that Dan Callahan keeps raising — my response often is to say we do well in our kind of country, and our kind of organization as we make things less and less expensive when we say we're going to have to have it for everybody.  But it's not only in relationship to the dialysis experience, we've had it in all kinds of others.

The Polio epidemic of 1955, we decided we were going to take care of all those patients, and we had them in iron lungs.  You remember that.  And now that process of having these very awkward machines in play has now been replaced with these remarkably less expensive and more effective ventilator systems, which are extremely useful in all kinds of other ways that we have organized.

Even the AIDS epidemic — all of you must remember that when AIDS first appeared, the doctors and many of the sciences said look, this is a virus.  We're not good at curing viruses, correcting viruses.  Everybody, even at great centers like Hopkins, was very hopeless about the ability that we were going to have, but we were pushed hard by the particularly afflicted community, the gay community in particular, to do something and stop sitting around.  And now we've changed that.  We have these — I absolutely agree with you, they're expensive treatments.  And when you see the poor children in Africa who have lost their parents to it, it breaks your heart.

On the other hand, having them and accomplishing it was expensive, has made it possible for us eventually to get things which will be less expensive, and could go to other countries, and the process also of encouraging other countries also to develop the social system that could generate these  things for themselves.

I'm less concerned, in other words, by the advances of science here as they will reorganize our care, and bring certain kinds of conflicts to the fore, conflicts that will have economic and population significance, but I also agree with Dan that the life span is the life span.  I'm a doctor, and I'm not interested in increasing it.  Within the life span, I'm interested in removing disabilities, and directing my attention towards the correction of disabilities as they turn up, and eventually to have what Frank has mentioned, and I think Mary Ann once mentioned before, the One-Hoss Shay phenomenon, out to the thing where all of the things tend to fall apart together.

What concerns me, in other words, in fact, is not the science.  What concerns me about the best available care for patients if you go and talk with them, is that they tell you they can't get a doctor any more.  They can go from specialist, to specialist, to specialist, and get the unique science of today directed or not directed to them, but they can't get a doctor who begins with them at the beginning and walks the walk with them, and tells them what they're going to expect, takes them back from the specialist and decides what's going to happen further, and has the kind of meaningful relationship with that person that permits the decisions that will ultimately be made for the benefit of that patient who you lived with.

Now it used to be that there were plenty of such doctors around, but they're harder and harder to get.  Now it's not that I don't know plenty of people who do it, people like Dan are rare, but they're not as rare as hen's teeth.  There are a lot of people who do it.  The oncologists, for example, neuro psychiatrists, and plenty of other people do it, but we're not encouraging that in our specialist-oriented and science-oriented way, and we may not be supporting it.   We may not be supporting it either out of the culture, or out of the finances and the like, and I think that best available care more than anything else is going to demand us reminding people again of that.

CHAIRMAN KASS:  I want to say one tiny thing to you, Paul, and then use the occasion to turn to this other question which Mary Ann and Dan had started with, and I know Frank is interested.

I'm not sure that — I'll put it bluntly since we're friends.  I'm not sure that you feel sufficiently the force of the degree to which the very science that you rightly embrace is responsible for the kind of disappearance of the doctor that you are calling for.  That is to say, the specialization is precisely the result of the advance of knowledge, and the ability, in fact, to really do lots of things for people in a specialized way, and the Oslers, they're not absolutely gone, and he was rare as a hen's tooth in his time.

DR. McHUGH:  By the way, I agree with you on that.  I'm not disagreeing with you about that.  In fact, I for a number of years ran the Professorial Promotions Committee at Hopkins, and one of the questions that was often asked was would Osler get promoted today? And the real question was well, you better go back and look at what he did for exactly that reason. 

No, I'm not disagreeing.  I'm certainly not disagreeing with anything that anyone has said here in one sense.  I'm only trying to give it the context in which the practice puts it forward.  The scientists work with regularities.  Doctors work in the disorder of experience, where all kinds of factors, scientific, meaningful, cultural, economic are in play.  And if they have a relationship with the patient, the individual patient, they can carry people through with a sense of meaning, and a sense of the art of ultimately living the kind of thing that we hope for ourselves with their help.

CHAIRMAN KASS:  Someone want in on this?  Bill, did you have a hand before?

DR. HURLBUT:  I did, but if somebody has an intermediate comment, I'm okay.

CHAIRMAN KASS:  I was about to turn us to the other set of questions, the effects of resource.

DR. HURLBUT:  Then I'd like to speak before that.

CHAIRMAN KASS:  I'm sorry.  You want to comment before that?

DR. HURLBUT:  Yes.

CHAIRMAN KASS:  Please.

DR. HURLBUT:  Well, I just want to raise a rather vague notion, that maybe our problems with regard to the specifics of care and the over-extensions of technology will best be solved by keeping in mind the integrated whole.  After all, ethics is not just about preservation of life, but about living well.  And if we keep in the forefront of our mind all the goods of living well, then that will keep in balance a lot of things that could be exaggerated out of proportion.  And specifically, it seems to me that those are communal goods, and individual goods.

When I think of medical interventions of the kind we've been talking about here, I think maybe Dan would agree with me on this, oftentimes a medical intervention actually does some good for the patient, but also does something bad for the patient, since it alienates the patient from himself.  And the most obvious example might be making us increasingly into what's been called cyborgs with artificial parts. 

You can imagine that if you have an artificial heart, you may be pumping okay, but you may be slightly less than yourself.  You don't have quite the integrated endocrine responses to fear, for example.  Your heart doesn't start beating fast in response to the other indicators and signals from your body.

We could repair certain organs, but they're slightly less integrated to the whole of the person.  And slowly but surely the integrated physical being of the person is eroded.  There's, likewise, a parallel phenomenon, the psychological nature since we're a psycho physical unity.  The person gets alienated from himself to some extent, to the point where you could imagine producing a technological life extension that was, as you said, like an escalator that is continuing to roll but is getting nowhere in terms of personal process, and maybe even doesn't involve a memory or continuity of being with the person.  And the same thing, of course, can happen to the role of a person within the society.

I think what's going on here is a strange question that anybody who is involved in medicine is constantly asking himself; how do we balance the good of the given, of the natural world, with the obvious  imperative of healing and life extension?  And I think we have a big problem with that in our current society.  We tend to go on all fronts along with our immediate and superficial goals, often driven by pleasure and fear, but these can be superficial goals that if pursued with undue emphasis can alienate us from our deeper goods.

The question is how at the end of life do we keep in mind the larger over-arching integration and purposes of life in relationship to intervening powers of medicine?  Technology can certainly break the integrated connection that we're after, so then we have to ask ourselves that very, very hard question that we struggled with in this report.  Is there such a thing as a natural good in aging and death?  And although it's very hard to speak of, especially in a public document, what is the relationship to suffering in all that?  

None of us, at least I, for one, and I don't  think anybody in this room would want to have our society turned what "Brave New World" did, where people live in these kind of 25-year-old mentalities and then drop off the edge of a precipice.  We feel like there is a process to our lives.  We feel like there's meaning and purpose, that there's a source and significance to our lives, and a significance of our lives that transcends life itself, so what I want to say actually is maybe unhelpful, but I want to say that I think Dan's comment "I don't want to get theological", is maybe exactly the problem.   Maybe we don't specify this for an entire pluralistic society, but frankly, I think that that's what we need to do, is at least individually get theological in the broadly construed sense of theological, that we have to ask ourselves where did we come from?  What are we for?  How does our technology play into those purposes?

We certainly are in a love affair with technology, and it's certainly crucial that we try to preserve and sustain the mystery of life from being mowed down by the juggernaut of technology. 

CHAIRMAN KASS:  Thank you.  I want to turn to the other question, but I want to also thank Bill.  I think we are trying to do something very useful, albeit limited, in this particular document, but if part of our aspiration really is richer bioethics, we might, in fact, be in danger of contributing to some extent to deflecting the attention from this.  That was probably why I wanted this discussion to be had; questions of the meaning of the life cycle, the question of what is a good death is not the same as the question about when you should refuse life sustaining treatments, important though that latter question is.  And to the extent to which the ethical considerations are driven by those very pressing concerns, we miss an opportunity, in fact, to flag these larger kinds of questions, so I very much appreciate and sympathize with, and I'm concerned about whether what we've done, however useful, is actually adequate to the larger task, though it's not clear to me that those larger things are — we can legitimate such conversations, whether anybody but the people in the room would find them welcome is another matter, but I'm very grateful for that.

Let me turn to the question of — everybody is intuitively bothered by the inequities, not just of medical care, but of inequities generally.  What to do about it is another matter, and how to deal with it without making certain other kinds of things worse is a long subject.  They are political questions.  There are people who have been very critical of this Council for not taking up the subject of the effects of the distribution of medical resources.  Though they were not primarily interested in our actually exploring the ethical issues, they were interested in our taking a particular side on this and becoming advocates. 

I happen to think that this is a very important and difficult ethical question, but I'm not really sure how you set about doing it.  And if I were to say turn to my friend, Mary Ann, who is I think prescient on this subject of tension amongst the generations, a kind of forgetfulness that after all, all of us, God willing, get a chance to be at all stages of the life cycle and, therefore, declaring war on one stage against the other is just deeply dumb.  Yet, you have the AARP but you don't have the comparable equivalent for the children under five.  Even the ones with resources don't have people to speak for them, so the question is how might this Council set about trying to think about the ethical way, the kind of ethic for speaking about these things, and to do so not in a language you should be nice to your neighbor, but do so in some way that could actually — but to make it concrete and useful.

Is it possible to speak about the obligations between the generations in a way that has some kind of bite?  Is there a way to speak about the more limited question about how to set limits, more modest limits on the expenditures that here have been discussed in which lots of money seems to be spent for very little gain, and that robs funds that could be better used for other things.  If Janet were here, she would say so in spades. 

Now it's one thing to sort of issue a cry for the problem.  It's another thing to say how could careful reflection be actually helpful on this subject besides raising your hand and saying this is a terrible situation?  Paul.

DR. McHUGH:  Just a very minor qualification, but I think your formulation right near the end actually makes it way too easy.  You said lots of money spent for very little gain.  There's lots of money spent for a lot of gain, but nevertheless, the kinds of problems that we have.  I think that — 

CHAIRMAN KASS:  Let me take the correction completely.  And since you have the floor, and since ethics is your field, may I invite you to put your toe in this water?  Can a body like this actually say something on that subject?

DR. McHUGH:  Even though I wasn't named as one of the people for whom this was a primary concern, I'm supposed to say something.  Well, yes, a body like this can say something, but my own view and, of course, all views on this question are arguable and disputed.  My own view is that the question is to some considerable extent a political one; that is to say, there are always many more things that we need to spend our resources on than the resources will cover.  And it's very hard to find the level of reflection from which to say this is the way it must be done.  And I think to some degree these things do have to be fought out at a political level.

Now that does mean that your five and under category will not be speaking for itself, of course, in that political argument, and somebody else is going to have to do it.  Maybe part of the role of ethical reflection is to be alert to that fact, and be aware that somebody else will have to do that, so in that sense it seems to me there would be a kind of moral role to play.  But for me, anyway, I don't think it's possible to delineate what the right distribution of our resources would look like.  I think that has to be argued out.

The other thing I'd say is that however you work it out, you have to have some kind of micro/macro distinction.  In other words, I don't want my physician pondering whether providing care for me is the best way to serve the larger common good.  I would like my physician to think that I'm the patient, and  that's my doctor, and there's a certain kind of relationship at work there.

It's a different matter whether at the macro level we ought to think about ways of allocating resources such that maybe there's some kinds of care my physician just can't provide for me.  He does me no wrong if he doesn't provide for me what we haven't made possible to do.  But if it's possible and it's there, and it's within my means, or my insurance means, or whatever, I'm very reluctant to have physicians begin to think of themselves simply as servants of the larger good, and not of particular patients, so those are the several kinds of ways into the question that I'd take.

CHAIRMAN KASS:  Let me lean on you just slightly, if you don't mind.  I like the distinction between the macro and the micro, and I think these kinds of questions in so far as they're questions of policy really have to be social questions, and socially everybody understands that.  But if someone were to say to you, Paul, look — society has basically decided that we are misallocating our medical resources, and we want this Council to offer us ethical advice on Dan Callahan's theme setting limits.  Is there an ethical way to have a discussion?  I grant that the political process might not pay any attention, but would you think that there is a way to have a serious discussion, and to develop some kind of ethical norms or guidance in general terms that might help people to figure out what's too much, without saying so-and-so's life is not worth living or not extending, but as a matter of social policy, or if somebody came to you and said look, that's not for ethicists to talk about, and we shouldn't try.

DR. McHUGH:  Well, I never accept someone telling me that something isn't for me to talk about, so I wouldn't take that route.  I don't find the "how much is too much?" a very fruitful question at the level of particular patients.  And I wouldn't use the language of medical care here.  I'd want to talk about research. 

Dan Callahan has also pointed out that the NIH research budget is the one thing that we keep pumping more and more money into year after year, and that's part of what generates our problem, because if you got a new and better treatment, and you're my doctor and my insurance will pay for it, I think you better give it to me, not decide that there's somebody younger and healthier, and nicer who the community would be better served by our keeping alive.  So yes, I think we can talk about it, but I would start talking about research priorities rather than start talking at the level of medical care and how much is too much for particular patients in particular circumstances.  I want to start talking at the macro level.

CHAIRMAN KASS:  Or what Medicare should pay for.

DR. McHUGH:  I mean, certainly that's a legitimate topic, or at least some kind of lexical ranking of what it should pay for certainly there.

CHAIRMAN KASS:  Mary Ann, then Ben.

PROF. GLENDON: So given that these questions are going to come up in the framework of interest group politics with some groups not represented at all, we've always said on this Council, I think, that one of our aims is to try to enrich political discussions.  It's a very ambitious aim, and the question of allocation of resources, I think one very useful question that almost never gets asked, but that can be raised by a group like this is addressing each contending party for a piece of the pie.  Ask them to explain what kind of society their program is likely to bring into being, and ask them if that kind of society is the one that they really want to live in.  I think it's just a very helpful question to draw things out a few steps.  What probabilities are you setting in motion with these decisions, especially at the macro level?  But what are we going to do research on, just things that are of interest to the elderly, or other matters?  So just a way of framing the question I think is something that — we can't solve the problem.  We can't make the political decisions, but we've always said that we're trying to raise the level of the national conversation.

CHAIRMAN KASS:  Ben, and then Frank.

DR. CARSON:  Leon, I think it's not only a legitimate topic for us to consider, I think it would almost be negligent not to do so, because it's such an important issue for our society.  We have certain norms and expectations in our society.  For instance, we feel that everybody is entitled to shelter, to a roof over their head.  And we, as a society, go through great lengths to make sure that that occurs for the vast majority of people.  However, there are some people who go beyond that, and perhaps live in very luxurious accommodations.  We don't begrudge them that.  And by the same token, we need to begin, I believe, to look at certain types of care that are provided, and that are available. 

Certainly, there needs to be a basic level of care that is given.  If people want to go beyond that,  just like if they want to go beyond basic shelter, then that should be their responsibility.  It shouldn't be the responsibility of the society, number one.

Number two, I wonder if at some point there is a way that we can integrate into this whole cost issue the concept that one-seventh of our economy is based on healthcare.  I personally think that's way too much, but the reason that it is, is because we tend to be oriented towards sickness.  We want to fill up the hospitals, we want to fill up the ICU beds, we want to treat this, and this, and that.  And we don't spend anywhere near an appropriate amount of time dealing with wellness, which would save us an enormous amount of money.  I wonder if we have some obligation to bring that out?

CHAIRMAN KASS:  Very nice.  Frank.

DR. FUKUYAMA:  Well, I'm the one that thought that we ought to have a statement, which I'm glad has got into the report, that there's actually a moral case to be made for the government mandating the socialization of the costs and risks of long-term medical care.  We'll see if that survives in the draft, and I think it's a perfectly legitimate topic for a moral or an ethical discussion for the following reasons, and it really gets to the whole question of the moral arguments between the left and right in this country over the legitimacy of the welfare state.  And in this case, I believe that this particular extension of the welfare state is perfectly justified, for the following reasons. 

Americans are much more inclined than Europeans to not like social solidarity provided through central government.  Americans believe that for moral reasons, it is better to have people and families be self-reliant, and so when FDR introduced Social Security, one of the conservative arguments against it was that this would relieve families of a sense of obligation towards their parents or older people to care for them.  And, in fact, that is one of the consequences of state-provided Social Security.  However, I think that if you think about that, so in a sense a lot of the model that people have is that people ought to think ahead, save money for their own debility and take care of themselves without the government stepping in.

Now I think that that just doesn't work under present circumstances for a lot of reasons.  First of all, it's dependent on an old model of the family that just does not exist any more.  Privately provided healthcare was dependent on the uncompensated labor of basically women up until the revolution that took place in the 60s and 70s, and it is simply not realistic — and even in these Confuscian societies in Asia where that was actually built into the ethical structure of the society, that's all breaking down because of the changes that Mary Ann referred to in family structure, this dramatic drop in fertility, plus the greatly extended life times, and then the need in the case of Alzheimer's, 24-hour-a-day care over an extended period, five to ten years.  It is something that families simply cannot — I mean, the idea that families could provide this I think is just completely unrealistic. 

The other moral case that is made by conservatives against these kinds of government mandated benefits is the moral hazard one, that if you insure against something, you're going to get more of that bad behavior.  That was the case against Aid to Families with Dependent Children.  It insured against the risk of a single woman raising a child, and it encouraged more out-of-wedlock births because you now knew that you could raise a child without having to marry the father.  And I would say that this simply does not apply in this case.  There is no moral hazard involved in mandating the socialization of the risk against long-term medical care.  Nobody is going to get Alzheimer's deliberately because they know the government is going to protect them economically from doing this.   It's a pure genetic lottery as to who does it.

Now I think that there is a public policy dimension to this that we do not have to address, because there's lots of different ways of taking care of this.  The government could provide — right now, the current policy is really pretty defective, because right now what everyone does is they try to figure out how to strip all the assets out of their parents' bank accounts so that they can declare themselves bankrupt, and then qualify for Medicaid.  So, in fact, we are providing government insurance for this, but through a way that was never intended.  It's through a gaming of the system, so it's a very dysfunctional way of going about it, but you could either have the government provide this insurance directly.  You could do it as we do in the case of automobile insurance, where we mandate that everybody must insure themselves against the risk of liability and so forth.  Or at a very minimum, you can prevent the private market from doing what it would do without this kind of intervention, which is to try to cherry pick; use, for example, genetic information on who is likely to get Alzheimer's, and then raise insurance rates for people with that propensity.  And certainly at a very minimum, I would say that you should not permit private insurance to make those kinds of discrimination, so I don't think it's up to us to say what particular public policy ought to fix this problem, but it does seem to me that you can make a pretty straightforward moral case that this is one instance where there's a kind of public good that needs to be addressed that the private market and private individuals simply are not going to be able to take care of on their own. 

CHAIRMAN KASS:  Peter, take the last comment, and we'll take a break because we have guests.

PROF. LAWLER:   Let me just say something very quickly.  I agree with about 90 percent of what Frank said, and this afternoon, because we have guests, I will even say that our report points to certain kinds of public policies over others, but let's let that go until this afternoon.

CHAIRMAN KASS:  Okay.  Look, I think obviously we didn't exhaust any of the things we've talked about here, but I think there were things that were raised in this discussion that could come back tomorrow morning when we talk about future directions, and future activities of the Council, and be thinking about that and other things when we reconvene on that.  We've run five minutes over.  We'll take 15 minutes.  We'll start at 10 minutes to the hour.  Please be prompt because we have guests.

SESSION 2: ETHICAL CAREGIVING IN OUR AGING SOCIETY II: CAREGIVING PERSPECTIVES

CHAIRMAN KASS:    On the record.  This is our second session entitled "Ethical Caregiving in Our Aging Society: Caregiving Perspective."  In this session and the next, we've invited practitioners and students of caregiving to help us think about two general matters: first, how our work to-date relating to the actual activities of caregivings, caregiving for persons with dementia, this session, and second, to the public policy aspects of the subject of giving care for the elderly and the frail, the subject this afternoon.

All four of these guests have received the recent draft chapters of our report for review. They're not primarily to be commenting on the report. What they've been asked to do is to draw on their own experience, a current research, their own or others, to identify key areas that needed attention and/or reform.  They've been invited to suggest ways that what we have done in our work to-date might relate to ongoing activities and practices, might be brought into relation to those ongoing activities and practices or could be developed further fruitfully in future work.

To speak from both clinical and research caregiving perspectives, we're very fortunate in this session to have with us two people who are long immersed in the care of the elderly and care of persons with dementia.  Both have been also keenly interested and active in the development of ethical standards and teaching in this area.

Dr. Greg Sachs is the Chief of the Section of Geriatrics and Professor of Medicine at the University of Chicago, also Co-Director for the Center of Comprehensive Care and Research on Memory Disorders.  He's been a member and past Chair of the Ethics Committee of the American Geriatrics Society.  He's now still a member.  He's also on the Ethics Advisory Panel of the National Alzheimer's Association and 25 years ago this fall, he reminds me, he was in a class of mine on Science and Society at the University of Chicago.

Second, Dr. Peter Rabins who is the Co-Director of the Division of Geriatric and Neuropsychiatry in the Department of Psychiatry at Johns Hopkins, Principal Investigator of an NIMDS grant to assess Care Decisions in Late Stage Dementia, co-author of "36 Hour Day,"  a book called Getting Old Without Getting Anxious and a guidebook Practical Dementia Care.  Dr. Rabins has taken special pains to get here from a meeting where they were in fact working on the revision, if I understand, of a text in this area.  And if you'll forgive me for mentioning this to the group, we'd like to wish you a Happy Birthday.

Thank you both for being here.  We'll start with Dr. Sachs and then Dr. Rabins.

DR. SACHS: Thank you very much.  It's really a privilege to be able to speak with you and I want to thank you for that and also for your attention to this subject which is very near and dear to my heart.

Just an outline of my remarks, I'm going to start with a case because I'm a clinician and also because I think it's very important to bring us back  to the clinical realities in which these decisions are made.  And then my remarks will cover the major chapters within the draft report though not commenting in any detail on the report itself.

The main points that I'll make to start with some of my conclusions are what you call the "Mass Geriatrics Society" or what those of us in the field call the "Demographic Imperative" is very real.  In fact, it may be even more scary than people are currently projecting and we shouldn't be counting on cures or major advances in treatment to change our preparing for the potential disasters ahead.

Second, the section on advanced directives, I think that these clearly are not exclusive for the problem of providing good end-of-life care for people with advanced dementia, but they can be part of a solution for some people and so should not discarded.

Third, on the issue of ethics in caregiving especially when it comes to end-of-life care that dementia matters a great deal, that it is not just a part of aging but it is something special and different and is both clinically and morally relevant.

In particular, I think I'd like to emphasize that I am less worried about the advancing number of people and smaller numbers of caregivers about what may happen in terms of undervaluing and undertreating people and much more worried about the propensity to over treat, to not provide good end-of-life care, and in fact, to have a healthcare system that is particularly ill-suited for the ongoing care of people with dementia.

And finally, I'll conclude with some comments in which I think that it's very important for this Council to be trying to focus on these issues about chronic care, chronic disease and end-of-life issues because I think many other bodies in the field have already started to move towards focusing more and more so on issues around cure and prevention of even things like Alzheimer's Disease.

So to start with my case, this was a 69-year-old woman who had been living with advanced dementia in a nursing home for two years.  At the point at which I'm commenting, she was unable to recognize family, only able to speak a few intelligible words and had had multiple hospitalizations for things like pneumonia.  Her agitation and other problematic behavior has caused her to be restrained or sedated on a regular basis.  She died in that nursing home in that state restrained with no particular palliative care efforts in place and with no family around her.

So what's notable about that case is first of all it occurred more than 20 years ago.  Sadly, that's the way that many people still die today with advanced dementia.  Because it occurred 20 years ago, she was not tube fed.  I guarantee you in most situations today in most nursing homes that would have become a real issue and there would have been a lot of pressure to put in feeding tube.  She was younger than most patients with Alzheimer's Disease and finally, that patient was my maternal grandmother.

So I bring it up to also say something about my motivations both in terms of improving end-of-life care and wishing that we had effective treatments because of my increased risk of having this disease.  And also because of having already fielded my mother's advanced directive of wanting me to shoot her if she should end up like her mother which I told her that since I was already on record of being against physician-assisted suicide and voluntary active euthanasia that I couldn't carry that out.

My other disclaimers, one is that I have a nine-year-old son who has some development disabilities and so I have an intense personal interest as well as an professional one in looking at these issues of how we value quality of life and taking great care not to project what we see as value and quality and make decisions based solely on those.   And you've already made my final disclaimer about our connection from 25 years ago and let other people draw their conclusions as to whether or not that's important.

So to the demographic comparative, the numbers are very real and we really should be scared by them.  I'm not somebody who in general is interested in apocalyptic tales but the numbers even  if you take the most conservative sorts of estimates are very scary in terms of the numbers of people who have dementia and there's a growing body of research looking at things like cancer survivors and their increased risk of dementia, survivors of coronary bypass surgery and their increased risk of dementia as well as the sort of epidemic of obesity and how that is linked to hypertension, high cholesterol, diabetes and all of those risk factors perhaps being risk factors for dementia as well.  So in a sense, there are many things that we're doing either because of life style or because of other medical treatment that may actually swell the numbers of people with dementia even further.

Very quickly, I wouldn't count on cures.  We don't have very many of them, even the ones that were alluded to earlier today, either cures are of very effective treatments whether it's HIV or polio.  We have done pretty well when it comes to infectious diseases.  We don't do well when it comes to late-onset, multifactorial diseases.  I think Alzheimer's Disease and other dementias are going to be the kinds of things that aren't going to have a silver bullet.

I think also that the notion out there that if we could just delay the onset of dementia by a few years that somehow that would solve many of these problems that people would reliably die a few years later without getting dementia is really a hope and there's really little evidence to suspect that that will be true.  That in fact, in addition to the nine different medicines we now use for congestive heart disease, we have things like Medicare now will pay for implantable cardiac defibrillator in advanced congestive heart failure.  So it's even more likely, I think, that somebody who gets advanced dementia will have other kinds of supportive care that will keep them alive longer rather than allowing them to die quickly whether it's from that arrhythmia or the pneumonia, the friend of an old man.

So that's the tidal wave of people with dementia and our preparedness.  You've already talked and written about long-term care and the inadequacies of the numbers of caregivers.  But to flesh that out a little bit, surveys still suggest that perhaps as many as one-third of older patients say that they would prefer to die rather than being in a nursing home and that's even though we've made considerable leaps in care in the last 15 years.

The turnover in nursing homes of those people who made a little bit more than minimum wage, the certified nurses' assistants in many facilities, is 90 percent or greater per year.  So it's not like they have a stable body of employees where we can do quality improvement and education and expect to make really big differences.

And we really aren't doing things that I think, whether it's because of specialization or research or some of the incentives within Medicare and other places where we are not supporting comprehensive care, geriatric-type approaches, and in fact in many ways, there are disincentives.  When I started off as the Chief of Geriatrics, our hospital counted on each of our patients providing a net $3,000 profit to their bottomline.

They now think of Medicare the way they used to think of Medicaid that at best they break even or they lose money.  They are not interested in expanding the practice or hiring more geriatricians.  That's the way that we value things in American medicine is by paying for it.  We're not paying for the kind of care that we think we want to get at the end of life.

So, to advanced directives now:  For many practical reasons as well as the conceptual ones that you cover very well in the report, I would agree that they are not the answer as any sort of simple solution to a complex problem would fail.  But I think it is important to point out that they can be a partial answer for some people.

So for the few who have them  who have given it some thought in making an advanced directive as part of a more comprehensive planning process with their family and with their physician, they can be helpful.  It may not be that they'll be instrumental in making individual decisions, but it will help the entire decision making process along the line.

And we should take advantage of the fact that all states have them.  Most states do have laws in place of decision making for families in the absence of advanced directives.  And most importantly for patients with dementia, family caregivers make decisions for many years for them anyway, whether it's for where they live, what they get to do during the day, the medications they take and I think it's a little bit unfair in a sense to all of a sudden cast a really harsh glance at how they would be making decisions when it comes to end-of-life care.

I've always been amazed at the kind of care that the families of my patients provide often for the best interests of the patient, often at great cost to themselves, often under great duress.  So I think there still is a value to using them where people have them but we should not be pushing them as a solution to this area.

Turning now to the larger portion about ethical caregiving and focusing in particular on end-of-life care, I first want to do a little bit of correcting what I think is a caricature out there of Alzheimer's Disease or dementia in a sense where it may be portrayed really as a memory disorder only and that one in which people are aware when they start to get the illness, have anxiety or depression and then sort of fade away over years, perhaps even decades.

In truth, dementia is something that affects multiple cognitive domains.  Often individuals who are affected are unaware of the process and do not have insight into it which creates its own complications when you're trying to negotiate a care plan.  It's frequently accompanied by psychiatric symptoms and I know you're going to mention many of those including things like delusions, other kinds of psychotic behavior, anxiety and depression.  In many of those symptoms, the things that actually cause suffering for our patients with dementia really have very limited treatments available.  I think that's actually an area where we need to be focusing research and care.

Many kinds of dementia whether it's dementia with Lewy Bodies or multi-infarc dementia do have physical symptoms where patients will get them as the diseases progress.  Furthermore, people with dementia actually live for a lot shorter period of time than what was once thought.

Even though I planned on not having any visual aids, this one graph  that was just passed out is based on the work Eric Larson and colleagues in Seattle looking at the impact of Alzheimer's Disease on remaining life expectancy and you can see for the middle group, which is people of average health, if you take a 70-year-old man, the average person would live about 12 years.  The average Alzheimer's patient at age 70 will live only about four years.  In fact, Alzheimer's Disease by itself has more an impact on a life expectancy than most other chronic illnesses that would put somebody in the lower quartile of health.

Furthermore, if you start looking at other kinds of prognostic indications including nursing home residents, severe psychiatric symptoms and hospitalization, you can start to come up with a prognosis for some groups of patients such as Susan Mitchell showed in the nursing home who may have a 70 percent six-month mortality.  So hearkening back (at least I learned something in college) that nasty, short and brutish may actually be more applicable to the life of somebody with dementia.

To flesh that out a little bit with even just in the last two weeks while I was thinking about what I might say here, the kinds of patients that I've seen have included a gentleman who is just being diagnosed with Alzheimer's Disease but already his wife was dealing with the fact that he was delusional, thought that she had caused Alzheimer's Disease in his family and he had been threatening her with a knife.  Another patient with more advanced disease who had been hospitalized for an ankle fracture, a blood clot, dehydration on three separate occasions was returning home to having care from a sister who is unable to care for her and essentially three days a week help when she really needed 24 hour care.

Another patient who came to clinic with dementia and congestive heart failure telling me that she was short of breath but her daughter who was estranged from her  because of abuse from a stepfather did not accompany her to clinic.  So I had no way of knowing whether or not she was taking her medication and whether or not her symptoms as she reported them to me in clinic were reliable.

Another patient with an altercation about telling him that he wouldn't be able to drive because we have very limited options in many areas over what they can do in place of that.  Another patient with a son struggling to keep his mother home alone but needing to come over in the middle of the night to assure her that there was nobody trying to break in needing to do things like checking under her bed.

Another call from a hospice nurse about a patient with advanced dementia and having a discussion about why we were not going to use antibodies.  In this case, there was no metastatic cancer or severe pain but a patient with this limited life expectancy that foregoing antibodies would be appropriate.

So I think, as I point out, these are many of the concerns as we're approaching the end of life and the paper that I submitted in advance from the Journal of General Internal Medicine really goes into more detail about some of the ways in which providing end-of-life care to people with dementia is particularly challenging.

I think it is very clear that people with dementia suffer more than many other patients in part because it's more difficult to tell when they are having pain.  We do a very poor job of assessing it.  They're more at risk of having treatments of either no benefit or unclear benefit including tube feeding which is something where there's actually pretty substantial literature that we haven't been able to prove that it's very helpful in a very significant way.

I think the other thing to emphasize from that paper was talking about some of the system issues that really need to be addressed because I think if you try and address the clinic individual decision making without dealing with the system issue, it's not going to go very far.  Then we clearly have some misaligned incentives when we start talking about people with advanced dementia who are dying in the nursing home.

The sort of situation that I have in mind is where the nursing home, when the patient is suffering more and they have a pneumonia and is getting close to dying, they are having to provide more care.  It costs them more but they are not reimbursed more.  Depending on where they are and if the patient is on Medicaid, if they send the patient to the hospital they can actually be paid a bed-hold and they are actually making money while the patient is in the hospital rather than losing money from having to provide additional care.  The physician instead of being paid at a lower rate and doing less frequent visits hospitalizes the patient and makes more money by seeing the patient on a daily basis and gets reimbursed at a higher rate.

The hospital will make money because the patient is liable to get out shorter than DRG for something like a pneumonia.  All the financial incentives are aligned for this patient to be transferred to the hospital rather than being cared for in the nursing home and being allowed to die peacefully.

In many of these situations coming back to the way in which the report has framed things about the best care for patients who are nearing the end of life with dementia, it really should not be conceived of as the most care or the most treatment or the most medical treatment.  In fact, the best care for somebody who is dying with dementia is like for most people who are nearing the end of life should be comfort and company.  That doesn't mean the defibrillator, antibodies, stem cells or many other things.

In turning finally to some of the issues that I alluded to at the beginning about where our society seems to be placing its emphasis, there are ways in which I think whether it's in research or in advocacy or the media that we've been turning away just in the last few years from the needs of people with advanced dementia.  When you were talking earlier about the research agenda, we can look at things like a $60 million NIA initiative on brain imaging that's focusing on distinguishing aging, minor cognitive impairment and early Alzheimer's Disease.

In contrast, a recent review by AHRQ found that there was really no substantial evidence base for the palliative care treatment for patients with dementia.  Two major reviews about the treatment of pain in patients with dementia said essentially the same thing.  We don't have the data.

We have a recent study using a drug for Alzheimer's Disease and minor cognitive impairment which is thought to be the forerunner of Alzheimer's Disease and it temporarily delayed the conversion from minor cognitive impairment to Alzheimer's Disease without affecting the eventual outcome.  The same numbers of people got Alzheimer's over three years.

There are going to be people who are going to be pushing for drugs to be approved for treating minor cognitive impairment.  It's been estimated that this is $15 billion marketplace for the drug companies.  On the other hand when we were talking about the symptoms of people with advanced dementia, we now have a warning from the FDA basically pointing out that for all the drugs that we use to treat psychotic symptoms in patients with dementia, they are essentially not approved and now there's accumulating evidence that there may actually be increased risk of death from these drugs.  But we have no substitutes.  People are not exactly flocking to that market.

In the media, we have an autopsy study of 37 patients with minor cognitive impairment that became front page news in the Chicago Tribune which then went on to talk again about cures and about the need for increased research.  At the same time, we see little attention to the potential impact of Medicaid cuts on nursing home care for patients with Alzheimer's Disease.

Even though I'm very much aligned with the Alzheimer's Association in many regards, one can even look there at the main advocacy organization for this patient and caregiver population.  The old logo for the Alzheimer's Association was essentially two people standing side by side and the slogan is "Someone to stand by you."  Now that may not be very catchy or raise a lot of money but it was a lot about what the ethos of the organization was.

The new logo, I think,  and maybe you know more than I do, Peter, looks like to stylized connecting neurons and the new slogans included things like "Our vision, a world without Alzheimer's."  They have a new program that's featured prominently on their website entitled "Healthy Brain Aging" named "Maintain Your Brain" and there was a recent conference on prevention of dementia.

So I think the focus in many of these different areas in public policy have really shifted to the well elderly, the people who have mild memory impairment and things about prevention and cure and we're getting precious little attention to the people that I care for and care about.  I think that anything that the Council can do to refocus the public discourse and policy debate on these issues would be really important.

On one hand, I think we need to avoid the extreme that people are talking about in terms ending up with people who get all kinds of treatment just because it's available, effective, perhaps not burdensome, I doubt it won't be expensive, and the other extreme of denying aging, death and dementia.  I think that there is a middle ground that we can be aiming for, both in terms of viewing aging and dementia  and end of life, of a place where comfort and company should be the priority, and where we're guaranteeing basic needs for patients with dementia rather than guaranteeing them access to an ICU bed.

I think later on I would be happy to talk about some of the other kinds of specifics that I think are very policy-oriented where we can get away from some of the disincentives for end-of-life care and realigning them towards matching up but would be financially correct with what would be best for our patients.

I think that needs to be done and it needs to be done together because I don't think you can rely on the virtue of families and physicians indefinitely.  We need to align the incentives and the system to be able to make it happen more readily rather than to make it an exception.  Thank you.

CHAIRMAN KASS:  Thank you very much   Our usual custom when we have two speakers is to allow a few minutes for questions of clarification, not for full discussion.  So we'll save the full discussion of the two papers together, but questions of information  or clarification from Greg Sachs.

PROF. GEORGE: Leon, could I just ask the doctor to say just a word more about that very interesting shift that you talked about near the end which was exemplified by the change in the logo and the slogan for the patient's advocacy organization.  Can you tell us what's going on behind that?  What's the politics or psychology?

DR. SACHS: I can tell you what I surmise.

PROF. GEORGE: Yes please.

DR. SACHS: Because I haven't been part of those conversations.  From talking to a communications company that was actually consulting for the American  Geriatric Society, they picked the Alzheimer's Association as a successful case example for us to look at.

In fact, by doing that, the shift in the image was one of more hope.  Rather than someone to stand by you and sort of the solidarity with people who are suffering, it was to raise more hope in the minds of the public so as a more positive image.  It actually has translated into greater donations from the public, more engagement of people as members of the Alzheimer's Association and has actually allowed them to command greater leverage, I think, in the marketplace in terms of the kinds of things they can do with the other kinds of companies.

When I say at cocktail parties, "What do you do?" "Death and dementia," people run away.  So it's the same sort of thing that, I think, the idea of having much more hope and some of it is real in terms of the prospects for more effective therapies is what's driving that.  But I think it also has been one in which people really don't want to have the image of the end-stage patient, the patient where you're dealing with nursing homes and a lot of those issues be the sort of thing that is out there for the public.

PROF. GEORGE: Especially in view of your suggestion that the Council might be able to do something helpful here, I gather that you think that it comes with some serious baggage and creates problems for the kinds of people, as you say, that you care for and care about.  Can you just say another brief word about how this has impacted negatively your patients?

DR. SACHS: Sure.   I think that when you look at the kinds of treatments that we have available or even the things that are in the offing, the amount of benefit that we get from drugs that are available for Alzheimer's Disease for example are really modest at best.  So the kinds of hope though, the hype, that`s come with that, has been one in which people really are expecting medicine to make a really dramatic difference.

They expect, I've even had people ask about things like stem cells which are pretty far off in terms of actually treatment, I would say, for Alzheimer's Disease.  I think it's falsely raised the hopes of many patients and especially of many families who often get very desperate when they're facing this sort of picture of decline so that they may grasp at straws.  I think it makes it harder for people to even see Alzheimer's Disease as something that's a terminal illness that is eventually fatal, something for which a palliative care approach would be appropriate.

PROF. GEORGE: Thank you.

CHAIRMAN KASS:  Dr. Rabins please.

DR. RABINS:  First, I would like to thank the Council both for inviting me here and also for focusing on this topic.  I've been interested in this for a long time and I think it's an issue that has been unappreciated and your focusing on it, I hope, will get people to think more about it in a thoughtful way.

I put my slides together before I had a chance to review the draft and it turns out that in fact some of what I was going to say you already know.  So I will be able to go through it quickly.

But what I actually wanted to do first was to touch on a few of the definitional and epidemiologic issues from a caregiver's point of view rather than societal, second, talk a little bit about caregiving and the emotional impact that it has on the caregivers, and then finally, to talk a bit about my views on some of the ethical issues, particularly some that I think are not addressed directly in the report and I hope that you would able to perhaps pay a bit more attention to it.

This is in a sense my disclosure statement.  Obviously people bring values to any topic like this and I just thought I should say that these are a few of the things that are important to me and have shaped my views on what I'll be presenting here today.

Again, as everyone knows, dementia, we're talking about adult onset of multiple cognitive impairments in individuals who are normally alert.  I want to again repeat what Greg said and that is that  people still think of these diseases as primarily memory disorders and in fact I think the irony here is that people who have memory problems don't come to attention.  I'll show you that in a minute.  So this second criterion I think is crucial and that is that ultimately all the cognitive functions are affected and it's usually the non-memory impairments that bring people to attention and raise, I think, many of the particular difficulties.

Again, Alzheimer's Disease probably accounts for more than 70 percent of cases altogether because about half of people with vascular dementia also have Alzheimer changes in their brain and about half of people with Parkinson's dementia have Alzheimer's Disease in their brain.  But I do think it's worth pointing out that each of these different illnesses, and these are the four most common neuro-degenerative diseases, have different symptom patterns and again, it's the non-memory symptoms that are often most prominent.

For example in fronto-temporal dementia which only affects about five percent of cases overall, the presenting symptoms very often are changes in personality, behavior and social comportment.  Intriguingly, these individuals often have relatively normal memory.  But a family member trying to care for someone who at age 60 starts hitchhiking for the first time, starts picking up children in a mall, total strangers and then gets arrested, you can imagine the impact that those kinds of behavior changes have without significant impairment in memory.  So I just think it's important  to say that diagnosis does make a difference even when we can't cure them.

Again, you know the symptoms of Alzheimer's Disease.  What I did want to emphasize again was that by definition every patient with Alzheimer's Disease has a memory impairment.  In addition, they also need to have other problems in what's called praxis.  That is doing everyday activities and that means things like dressing yourself, filling out your checkbook, driving a car.

See there, agnosia, really addresses perceptual problems.  Alzheimer's patients do not see the world the way we do.  They can't see the whole of things but also they have difficulty recognizing the familiar.  So this leads them to say things and experience things such as "this isn't my house" or "you're not my wife."  Again, from a caregiver's point of view to hear that statement, I think, is understandably devastating.

What's intriguing is that sometimes when the person speaks, when the caregiver speaks, the patient can recognize them.  That's why this is not a memory disorder per se.  It's an inability to perceive the world accurately.  This is the kind of information  that I believe is useful.  It doesn't cure the disease.  It doesn't change anything.  But it's this kind of knowledge, I think, that can help care providers understand what's going on and change something that sounds totally crazy, "What do you mean this isn't your house?  You've lived here 40 years" to  appreciate that it's part of the disease itself and that sometimes changes the interaction.

The third symptom is aphasia, language impairment, and I think most people have known someone who has had a stroke and developed language impairment.  Alzheimer patients develop the exact same kinds of language impairments.  But the reason that's particularly crucial to the discussion today is that part of decision making involves having a conversation with the person.  And when an individual has language impairment, that is they can't totally understand what's being discussed or they can't express themselves, the language impairments of Alzheimer's Disease get in the way of having a meaningful conversation sometimes, even when the person might have other abilities.

The one other point I wanted to make was that Alzheimer's Disease is a relatively slowly progressive dementia and, in fact, most people don't come to the attention of their families or a clinician until they've been ill for two or three years.

Why might that be?  Again, in the document, you talk about the staging and it turns out that each of these stages, and again these are really for our convenience, is about three years in length.  It's not generally until people start developing the second stage of the illness, the language problems, the inability to do self-care, the inability to perceive the world correctly, that other people notice there's a problem.

My guess about this is that if you're retired, you live a relatively routinized life, you don't really need to learn too many new things.  You do things the same.  But when you get lost in the neighborhood, when you stop paying your bills, when you don't file your taxes, you come to family's attention.  So people are often ill for several years and it's not until the second stage even today that they often come, I think, to our attention.  And I think that's important to keep in mind.

Now Greg has made this point, but I want to touch on it for a bit.  I'm a psychiatrist and I got interested in these diseases actually when I was in medical school.  I had an interest in psychiatry, but I was rotating on the neurology service and started to see that people with brain diseases had what were traditionally considered psychiatric symptoms and that's how I personally got involved in this field.

But one of the first studies that I did almost 25 years ago now was to interview 55 consecutive families and just ask them what kinds of problems are you having.  Now the main thing I wanted to impress you with here is how long this list is.  We ask people both the prevalence, how often, does this occur and you can see the numbers are pretty high and are they a serious problem for you.  If you look at problems, catastrophic reactions refer to emotionally explosive episodes, most families report those.  Suspiciousness 63 percent.  Making accusations, 60 percent.

Greg mentioned a patient who made accusations towards a spouse.  In fact, Dr. Alzheimer's original patient presented with two problems.  The first was that she had always been an excellent housekeeper and her ability to cook and keep the house up had been failing.  Remember that's second  stage disease.  And second, she was accusing her husband of infidelity, a delusion of unfaithfulness.

So these symptoms are part and partial the disease.  They are not part of the definition of it and I think that's appropriate.  These are disorders of cognition.  But I think it's very important to appreciate that much of what caregivers struggle with are symptoms that we would traditionally think of as behavioral or psychiatric or I prefer the term, neuropsychiatric. 

I also want to make the point that I'm probably not quite as pessimistic as Greg, maybe because this is how I focus my clinical work.  But I, in fact, think that these symptoms are often more treatable than the cognitive symptoms.  I agree with Greg actually that the drugs that we have are limited but I do think there's good evidence that non-drug treatments for many of these symptoms, change in the environment to address the patient's needs, actually can diminish the impact of these symptoms.  So that recognizing and I would hope that the report might just pay a bit more attention to this, that between 60 and 90 percent of patients have significant neuropsychiatric symptoms and we can help patients and their caregivers by treating those.  I think that's an important positive point to make.  Again, it's a very long list here.

Now people had actually criticized that work saying, "Rabin, you're a psychiatrist.  This is an ascertainment bias.  Either you're looking for it so you find it or people come to you because you're a psychiatrist."

So fortunately, my colleagues, Constantine Lyketosos and John Breitner, have done a very important study in Cache County, Utah.  This is a county in Northeast Utah that has the longest life expectancy on average in the country.  They have been able to do an epidemiologic study where they've interviewed more than 85 percent of the 65-year-olds  in this county and have followed them longitudinally since 1996.  So these are mostly people living at home and these are the prevalence figures that they've found.  Twenty percent have delusions.  This is at one point in time when they did a single interview.  Fifteen percent hallucinations.  Twenty-five percent agitation.  Was essentially wandering 15 percent.  But again, this is just to give you an idea of what caregivers are dealing with on a daily basis.  It's often at this behavior level rather than "Oh, he's forgetful."  Again, I do think we have some treatments to offer that.

Finally, I just wanted to touch on just a few other points, some of which are made in the report.  First is, and Greg mentioned this and I think this is crucial, that 75 percent of people with Alzheimer's Disease are unaware that they have a significant problem even at the beginning of the disease and this is absolutely crucial in thinking about the ethical and moral dilemmas because you can't sit down and have a meaningful conversation with a person about what they would want when they have no insight into the fact that they're ill.

Now 25 percent do have insight.  As the disease progresses, ultimately all individuals lose that insight.  But even at the very beginning as Greg said, the majority of people don't.  This is more my belief than backed up by research.  But I believe this is actually a peculiarity of Alzheimer's Disease rather than other dementia.  You don't see this in patients with Huntington's disease to anywhere near this extent at the beginning of the disease.  And even patients with vascular dementia have much more insight.

So I think it's very important to appreciate that the caregiver is struggling caring for someone, and as I'll say at the end, making decisions with and for someone who can't participate actively even in the beginning.  And I think that's a tremendous source of challenge and difficulty for the caregiver.

A second point I wanted to make is that about two-thirds of people with dementia and Alzheimer's Disease live at home.  So about one-third are in long-term care and these numbers have not changed since the mid 1980s when people started counting.  So that nursing homes in a sense really are in large part  dementia care facilities.

However, there's been a very dramatic change in this country in long-term care.  In 1980, there was no such thing as an assisted-living facility.  A whole industry has grown up in the last 15 years called assisted living.  Probably about one million or so people now live in assisted living and studies just completed by Adam Rosenblatt and Constantine Lyketsos and I'm part of that as well show  just as in nursing homes about two-thirds of individuals in assisted living have dementia.

What's intriguing is that these facilities were built and the whole industry was established on the idea that they would treat frail elderly individuals which is, I think, a very good motive.  But what's happened intriguingly is that as states have stopped increasing the number of nursing home beds, there are fewer nursing home beds today than there were in 1985, primarily because states don't want to license them because of the economic issues that are discussed in the report, this whole industry has built up which is a private pay industry.  But just because we haven't increased the number of nursing home beds doesn't mean the institutional care has gone away.  Now we have one million people or so in assisted living and two-thirds of them have dementia.

What's happened is that all the mild dementia cases, relatively mild, are in assisted living and what's happened in nursing homes is that they now treat the very advanced patients.  So that nursing homes have changed very dramatically.  They used to be called retirement homes like 25 years ago.  When I started, they were called retirement homes.  Now the vast majority of people there have dementia and 65 or 70 percent of people with dementia die in nursing homes.  I think that's very important to keep in mind.

Finally, I did want to mention that I'll come to the research I'm doing at the end but you can measure quality of life in people with dementia.  At least, I believe you can and that we're able to do it and that even in people with severe dementia, they can have a positive measurable quality of life, but that  quality of life in advanced dementia is interfered with by not just disease severity but by the presence of pain and by inactivity.  Pain and inactivity are two things that we can address.  We can't change the disease severity but even in advanced disease, we have some things to offer people and I think that's important.  So I just think it's important to say that there's a range of quality of life in individuals with dementia and with good care, it can be improved.  I don't want to be a Pollyanna but it can be improved.

So what we now have in a sense is a de facto dementia care system.  We have nursing homes and institutional care on one extreme, we have the majority of people being taken care of at home and we have a whole variety of services that are being developed and it's a challenge to get them sometimes but that whose goal is primarily to try to keep people at home as long as possible.  I do think that one of the important research agendas for the future will be to see whether we can demonstrate first that these are effective in improving quality of life and second, if they are, if they can keep people at home longer and that has not been demonstrated and I think that's an important research issue.

Now to switch to caregivers, again things that you already know, about 80 percent of caregivers  are women.  I've already said that about two-thirds of Alzheimer's patients and dementia patients live at home.  But the carers of the people with dementia, they are women at all stages.  That is at home it's 70 to 80 percent women.  In long-term care, my guess is it's 90 percent women, if not more.

We have recently found and several other groups have found the same thing.  If you look at who are making the end-of-life decisions for the person with dementia, in our study it's 70 percent women, half spouses, a quarter daughters and daughter-in-laws and about ten percent nieces interestingly enough.  So throughout the course of this illness, it's predominantly women who provide the care and decision making.

I also though think it's important to point out, and I think Greg has mentioned this as well, that long-term care and nursing homes are an essential part of a dementia-care system.  Ethel Shanas who is a socialist, I think, at Northwestern in the 1970s made the point that it's a myth that Americans dump their relatives in long-term care and I think that's just as true today.  The evidence for that is if you look at people with dementia who's in long-term care, who is at home.  By far the strongest predictor of being in long-term care is the severity  of the disease.  The most severe people end up in long-term care.  But in addition, people with greater psychiatric/neuropsychiatric symptoms are in long-term care and finally, people who have fewer available family care providers.

So I would hope that the report might be able to be a bit more positive and perhaps it is already in saying that as a moral society we want to develop a care system that meets the needs of people and as long as we have diseases like this that severely impair people, we will need long-term care.  We just want to do it as good as we can and the report does say that.  But perhaps that could be highlighted a bit more.

Then a few other things about caregivers, there's an extensive literature that's been developed over the last 30 years that show that people who care for individuals with dementia have about doubled the rate of emotional distress as similar people in the community.  So if the standard rates of emotional disorder in the community are 15 or 20 percent as some epidemiologic studies show, about 40 percent of caregivers have significant emotional distress.

Of course, the other side of that is 60 percent don't.  I think one has to keep in mind that clearly being a caregiver increases the likelihood.  In one of the studies that I did a long time ago, we looked at positive mood and we found that about one-third of caregivers had a positive mood above the mean of the population.  Of course, it should be 50 percent above and 50 percent below the mean.

But I think it's a mistake to be totally focused on the negative aspects of caregiving.  And when you talk with caregivers, they will tell you the positive, many will tell you, both the positive meaning they will get from providing it and the negative.  As did the cab driver who drove me over today asked me what I was doing and from National airport to here, we talked about positives and negatives of the care that he was able to provide.  So I don't think we want to dwell too much on the negatives.

But there are some surprises when you study caregivers.  This is a study that we did a number of years ago following caregivers for two years and these are individuals who are caring for individuals with dementia, the closed circles here, and individuals who have metastatic or disseminated cancer.  We found very few emotional differences between the two groups.

But what I had not predicted was that over two years there were not increases in the emotional distress.  That is as the disease got worse our prediction was that there would be more emotional distress in the care providers.  We found that either it stayed the same or actually went down over two years.  I think that's important.

The one difference that we found between cancer caregivers and Alzheimer's caregivers was over here and that is that Alzheimer's caregivers reported more guilt than cancer caregivers.  I'm going to come back to that at the end because I think that relates to the ethical challenges that people face.

One other point I wanted to make about caregivers is that not surprisingly if some caregivers are not doing well emotionally and others seem to be doing relatively well, we ought to be able to identify predictors of who's emotionally distressed and who is doing relatively well.  As you would predict, the severity of dementia does correlate, albeit modestly, with the level of emotional distress.  This is a multiple regression so these are all independent contributors to emotional distress.

We found that caregiver personality correlated with longitudinal distress, not surprising.  The way people have dealt with other stresses in their lives predicts the way that they will deal with this difficulty.  And that caregivers that tend to be more flexible tend to do a little bit better.  We also found though on the positive side that the strongest predictors as you can see of doing well are (1) having a larger number of social supports and (2) saying that your spiritual or religious beliefs explain this situation in some way.  The people who say yes to that statement do much better.  So again, I think this just points out that there are lots of things that we can be doing to help caregivers do better in this challenging condition.

I would conclude from some of these data that first adaptation and resilience is actually the norm.  Again, caregivers don't get worse over time. They actually adapt to what is a very challenging situation.  Frankly, I think this is going to be true of any stressful, traumatic situation.  If we went out and studied the survivors of the hurricane in New Orleans and Mississippi, I think we would find a whole range of emotional responses and that many people will be emotional causalities but many will do well and be surprisingly resilient.

The final point I wanted to make about caregivers is that there are now more than 30 studies to show that directly intervening with the caregivers, either providing information to them, education, or providing emotional support, can improve the emotional well-being of the caregiver, 30 studies.  It's much more powerful than the cognitive enhancing drugs.  I don't know if you would agree with that.

So again, just to emphasize, there is a lot that we can do.  We can't fix the biology but we can help caregivers with this high level of emotional  distress.

The last thing I wanted to touch on were some of the ethical challenges and this really came from this chapter in the book.  What I wanted to point out was that what is emphasized in the report now are really the bottom two issues.  That is the challenges of medical decision making for this advanced patient and a bit about feeding tubes, not really all that much.

But I wanted to point out that there are a large number of other issues that I think that the report doesn't address and I do think at least need to  be mentioned.  Actually one of the things that I included here was the day that I was putting these slides together I got an email from a child of one of my patients.  She has given me permission to reproduce it.  So it's in the packet and I think if you read this, it's a very sensitive portrayal of a challenge that this family is facing.

It turns out that about 20 percent of people with dementia live alone, usually because that's what they want to do.  Their spouses die.  This woman is still able to live alone with support, a lot of support, from her two children because that's what she wants.  But what her daughter lays out in that email is that, by the way the patient was a very successful business person, somehow she got one of these notices in the mail that she won a lottery and all she needed to do was give them some money.  Once she got on one of those lists, she now gets many of these a week and her judgment is impaired and what they discovered because she was doing her own checks was that she had sent thousands of dollars to these things.

The dilemma that the daughter lays out is how do we deal with that.  Do we stop the mail delivery at the house which seems to be a pretty intrusive thing for an independent person?  And we would do that because we would want to protect her.  I think she is asking is it morally justified to do that.  But then she goes on to say, "But, Dr. Rabins, I can see this is only the first of lots of similar challenges.  If we say yes to that, we're going to have to say no in a sense to many other things and that's going to be very difficult."

These kinds of problems come up all the time.  I get calls and I give a lot of public talks. Every talk I give, two or three people raise their hand and say, "My mom or dad is living alone" and so and so and "Now that I've heard your talk I know that he has early Alzheimer's.  He denies he has a problem.  I can't get him to the doctor.  What should I do?"

Again, I believe the challenge here is the person doesn't have insight even at the beginning of the illness.  So it's not that this individual is making an informed decision that they don't want to be medically evaluated.  They don't want to know if they have a problem.  It's that because they can't appreciate it then the challenge in the sense, the beneficent challenge, to the family is to say "Should  we `force' him or get him to do it in some way?"  That's an example.

Another example maybe I could touch on, and if there's time for discussion we can talk about more, is the third from the bottom and that's the issue of lying.  Many people with these diseases say things like I mentioned like "This isn't my home," "You're not my spouse."  But even more important, more difficult sometimes, is that they have a pattern when which, and it's often every afternoon, they'll say, "Mom is coming to get me" and they start getting agitated, "Where is she?  I know she's coming to get to me."  Of course, this is a 75- or 80-year-old individual.

And you can start to see that the challenges are (1) do you tell the truth.  Do you say, "But your mother's been dead for 30 years" and that would be truth-telling.  I think most of us would hold that as a very high value.  But in this instance, this serves no value for the sick person.  Telling her the truth or him the truth doesn't help them.  Why?  Because he cannot grieve that loss.  Every time you say, "But your mother's dead" he's never heard that before and has an acute grief response.  So that's not helpful.

And sometimes you can distract them.  Sometimes you can say, "Your mother was one of the nicest people I know" and you get off in a conversation and it goes away.  But many times, the most effective thing to do is to lie, is to say, "Don't you remember mom went to the ocean?  She's going to be back on Monday."  "Oh, yeah.  I forgot."  Then they're fine.  Again, is that morally justified?

I think you can see that even from the beginning of the illness there's just a whole range of challenges like this.  This goes back to that finding that we had on guilt.  I believe, and this is really just a guess, the reason that there's more guilt in Alzheimer's caregivers than in other caregivers is that they're dealing with these kinds of issues all the time and it changes the relationship in part that they've had life-long with the spouse, a parent and uncle, whatever.

I do think it's important to say that Elaine Brody who was doing a lot of this work 25 years ago made the point and I think it's important that we should not call this a role reversal.  This is not that the children are now the parents and the roles are reversed.  That relationship is unchanged.  It's still a parent/child or spouse/spouse relationship.  But the responsibilities have changed and so the decision-making responsibility falls then to the surrogate rather than that individual.  I think it's that conflict between role and responsibility that's such a huge challenge for families.  I would hope that you could highlight that a bit more in the report.

Finally, if I can just very quickly run through some of the research that I'm doing now. We've just finished a longitudinal study of 125 individuals with late stage dementia.  Ninety-one of them died during the study and what we're focused on is what medical decisions are made.   But more importantly, how are they made and how does that impact the family?

And we're not really even done entering the data but I ran a few things just for this meeting.  We had a very high percentage of individuals who had advanced directives in the study.  That's not surprising because the subjects were ascertained in nursing homes.  So when they went in, they were offered one.

But I wanted to point out that in addition to the challenges that are mentioned in the document, you can see that there's a real difference in use by race and sex and that is that another reason that these are not the sole answer is that they will be differentially used by different groups of people.  Individuals who are better educated, more intellectual, think more about things are much more likely to use these documents.  So if we rely too much on them, we will also exclude a large number of people

And I agree with Greg and I think the conclusion of the document.  They have a role to play and in fact, we have intensively interviewed in a qualitative way one-third of these individuals and of those individuals, the third who had had both an advanced directive document and said that they had extensive discussions with the person, they said that the document had helped get the discussion going.  That was the main value of it.  So as you conclude in the report, I think that is a value of them but we want to somehow get society to appreciate that these issues need to be discussed.

Then finally, I did just want to say what kinds of decisions are surrogates actually making since this is the bulk of your report.  This looks at the surrogates of 73 of the individuals who died during our study.  So this is in the last six months of life.  Half of them faced a decision about hospitalizing someone.  About one-third of them faced the decision about placing a feeding tube and in our region, feeding tubes are actually very rarely used.  You can see that a high proportion of people decided against hospitalizations, feeding tubes, ventilators.  On the other hand, there were things that people decided in favor of.

Now we also looked at were people in a sense satisfied with the decisions that they made and how difficult were they.  So I've broken things down and these are in a sense decisions to do something, to treat, and you can see that most people said when they decided to do something that wasn't so hard and most of them were pretty satisfied with the decision.  But when people had to make decisions to limit treatment, so I've even included comfort care here as a treatment-limiting type of decision, people struggled much more with them.  They found these more difficult on average and they were less satisfied.

Now I don't think that's bad.  I actually think that this is what we would hope.  When people face difficult decision, they struggle with them and they may never be totally satisfied with that decision.  But they made the decision, and I think as the report emphasizes, someone has to make these decisions.  But we should not be holding out the idea that any approach whether it's a discussion or an advanced directive is going to make everybody feel good about making hard decisions.  I actually think the report does a very nice job of laying that point out.

I'm sorry I went on so long but I will stop there.  Thank you.

CHAIRMAN KASS:  Thank you very much.  Could we get the lights please at your convenience?  Someone?  Thank you.  Thank you both for very lucid and thoughtful and helpful presentations.  The floor is open for discussion of questions or comments to either Dr. Sachs or Dr. Rabins.  Frank Fukuyama.

DR. McHUGH:  I just have a question for both of you combining that 90 percent turnover in the professional caregivers and then the data about the emotional distress and so forth.  I was in Japan over the summer and there was a front page article about how the Japanese government was now importing all of these nurses from the Philippines and giving them training to deal with their aging populations.  We're never as organized as some other countries.

I'm just wondering whether a higher degree of training, more economic incentives, some kind of certification, whether any of these would materially effect.  What is the labor market in that sector look like?  My impression, for example, is that since it is close to minimum wage like a lot of other minimum wage jobs, a very high proportion of minorities represented in it.  Can you just say something about that, either one of you?

DR. RABINS:  I can maybe and Greg can as well.  I would make one point which is again although I agree with Greg on those turnover figures, again there's a wide range of turnover in facilities and there's a little bit of research on looking at what are the low turnover facilities like and what are the high turnover facilities like and it is true that the low turnover facilities, the pay is better.

But I think in fact the stronger difference is that the morale is much better.  I think that in the facilities that do better there's a real effort to, in a sense, professionalize these individuals.  So I think that's part of the solution.  I do think that this is very hard work.  I mean this is not just flipping a hamburger at McDonald's.  This is skilled labor in my opinion and I do think that improving the pay would make a big difference.  But I think if we could change the attitude, partly of our society, and say these are professionals and this is a needed part of our healthcare system, I think that would help and then professionalize it through recognizing that there's a real domain of knowledge that these good caregivers have, I think those would all help.

DR. SACHS: I would agree with that, but I think if you look at many nursing homes in areas that have a large percentage of Medicaid patients, you'll find things like in one of our nursing homes a lot of the nurses are Filipinos.  It hasn't been because of some concerted effort to go over and bring them.  But it's de facto happening.

There are big differences in facilities and I think that some places, probably the kinds of places that people in this room would have their relatives in, are going to be the places that are going to be more private pay, higher standards, more involved in the family and are more likely to be able to sustain that kind of staff and have that good morale.  I think for a lot of other facilities they're trying to just get by and actually make their budgets in an era in which they're getting less money and having to provide care for sicker patients and still paying barely above minimum wage.

I think when people have looked at things like increasing the hours of training required and things like that there's been a real concern about whether or not you're going to be driving people away from the position altogether given how hard it is and how low paid it is.

DR. RABINS:  I might add.  I think this is an excellent example of a topic where research, I think, actually could answer the question.  It's not very sexy.  But supporting, engaging, the NIA to research this kind of question would be very positive.

DR. FOSTER:  The other issue just to answer that specifically that I've just seen in a controlled situation where a very strongly supported  church-oriented nursing home was present, the change of the director made a huge difference.  This is a nursing home that had the first Alzheimer unit in the State of Texas and so forth, but the leadership is absolutely critical.  I mean the new leader really loves these patients and so forth and so on and he's just transformed and the turnover has just dropped.

So it's like most things whether it's a department of geriatrics or whatever.  The leader is the critical person here, not just the people that work under, I think,  There's really a dramatic change when you get the leadership.  That's where the morale really goes up.

DR. RABINS:  Right.  I think that's the point to make that the leadership sets the tone and when it makes the caregiving the central act and shows people that they actually make a positive contribution to the quality of life for those people that trickles down to every staff member and makes a huge difference.

DR. SACHS: But the pool of people who are going to be those leaders, I mean there's a national nursing shortage.  Geriatric nursing practitioner programs are struggling to attract people just the way we are in geriatrics and in general, these are positions that pay less well than hospital positions. So you have a similar sort of problem that when you're fortunate to get people who have those sort of qualities.  But to provide that for a nation that's facing this sort of number of people aging, we have to do something other than just hope that it's going to change.

CHAIRMAN KASS:  Gil Meilaender and then Rebecca Dresser.

PROF. MEILAENDER:  We around this table, some of us like to argue with each other and I'd like to see if I could infect you with that spirit just a bit.  And what I mean by that is this.  Though clearly you agree on many things, just a very rough categorization, I would say that the tone of Dr. Sachs' presentation was a little more pessimistic and the tone of Dr. Rabins' a little more optimistic, granting that those categories don't, they're very broad.

I was wondering.  Dr. Sachs, where is Dr. Rabins a little wrong or off-base and, Dr. Rabins, where is Dr. Sachs a little wrong or off-base?  Just take your own emphases and I'd like to see you react to each other in that way.

DR. SACHS: I went to the University of Chicago.  So I like to argue.  I would say that part of that has to do with the tone that I took deliberately was to be a little bit pessimistic to help try and motivate some of the kinds of attention and change that I think is necessary.  There are many stories of heroic kinds of care that's being given.  I didn't talk at all about the kind of model that we've done with funding from the Robert Wood Johnson Foundation to do palliative care for people with dementia.  I think there are models out there and there are lots of positive things that can be done.

But the kind of demographic imperative that we have and how unprepared we are, I think there should be people sounding an alarm about this and it's not that what he said is not true or that these aren't good examples and that there is a lot that can be done but many of the examples of, like my program, your program and the kinds of things that can be done for caregivers are rarely done outside of funded studies, outside of special kinds of situations where they are academically affiliated, VA affiliated, other kinds of what I would call really top-of-the-line kinds of programs.

So yes, we can do that.  But to think back to when you're talking about the kind of doctor that you want or the kind of doctor that's out there, the doctor can write a prescription for a cholinesterase inhibitor.  The doctor who is seeing patients every eight minutes is not going to be equipped to do that sort of counseling about caregiving.  He doesn't have the staff.  Medicare doesn't pay for the social-working nurse practitioner to provide that kind of comprehensive care.  So there's a lot of stuff that we already know we could do that we could do better, but I don't think we have the infrastructure, the systems or the incentives in place to make that happen more regularly for the vast number of people who need it.

DR. RABINS:  I guess I should disclose that perhaps since my psychiatry training was under Paul McHugh, I both love to discuss and challenge people but tend to be on the optimistic side too I think.  But I'd probably if there was one place that I would disagree with Greg is I'm a bit more optimistic about biological advances.  I don't think these are going to ultimately change the issue, but I do think that animal models suggest that there's a real possibility that if this is an amyloid disease, if Alzheimer's Disease is an amyloid disease, that some of that burden may be removed from the brain, but that perhaps that will alter the neuro-toxicity of the  process.  So I think that may happen.

But what I believe the implication of that is is that what's happened with Parkinson's Disease is a very good model.  L-dopa has revolutionized the treatment of Parkinson's Disease and now there are a whole other number of dopamine agonist medications.  They have probably doubled the life expectancy of people with Parkinson's Disease (1) but (2) they have significantly increased the number of years of good quality of life.  However, they haven't diminished the number of years of bad quality of life at the end because people live much longer.  So the severely disabling aspect of Parkinson's Disease unfortunately, the brain keeps deteriorating.

And I think what may happen in the relatively near future is that in fact we'll be able to modify the course of Alzheimer's Disease and we will actually see a drop in the number of people in the middle and later stages for awhile.  Then after 15 or 20 years, of course, when it gets back in equilibrium, we'll be right back where we are now.

Second, I do think that even if we could make a dramatic difference or a preventive difference in Alzheimer's Disease.  I do think that the other great medical challenge that's barely been addressed is the issue of frailty in the elderly.  I mean that people who don't have dementia that most individuals by the time they're 90 have multi-organ failure.  This is mentioned in the report.

So I think in fact what will likely happen is even if we make a big difference in Alzheimer's, something else will in a sense come up.  But what I do think is it will be a lot later in life and I think that the 70s and the 80s, in fact, many more people will have healthy lives.  But we will have as many very debilitated individuals.

I do think that the ethical challenges will be different because I really believe that as the report emphasizes that the cognitive disorders have a rather unique aspect of ethical and moral decision making because they remove the ill person from the conversation.  That doesn't happen, I think, with the nondementing illnesses.  So I think that will be a change.  That may be a place that we disagree.

One of the reasons that I feel that supporting research is so important is an optimist I guess.  I think that things can be changed and one way to change them is to have public fora like this.  Another way I believe is to have research where you can show people this is cheaper than this but it's more effective.  This is good care and this is bad care.  And I think that adds an aspect to the conversation that is very powerful.

You'll never convince everybody, but I believe data can convince a lot of reasonable people that there's a right way to do things and a wrong way or a less right way.  So I'm an optimistic in that way, too and maybe we both are.

DR. SACHS: In different ways, I guess because I think frailty is something that's at risk of becoming just like Alzheimer's and minor cognitive impairment.  There are people in basic research in aging and geriatrics and gerontology who think that's sort of the next target.  So you find that there are certain genes and interleukin-12 is elevated in people who are frail and then you're going to get drug companies who are going to work on an expensive IL-12 blocker.

So we're going to be doing all sorts of things like that instead of providing basic home care needs, supportive care, long-term care and palliative care because all the economic interests are for drug companies for making profits to do those sorts of things.  The researchers have a very great interest in being funded to do their work and the kind of research that you do, that I do, that other people should be doing in this area isn't what gets funded.

DR. RABINS:  I maybe have one more thing to add and I agree with that, Greg.  I would just say that I happen to believe that overall this is very moral society and again one of the reasons I was very glad that this Council is addressing this issue is that I believe that if we can continually appeal to that side of this discussion, things can get better.  So I think biomedicine is part of it.  I think this part of discussion is part of it.  And I think making the points that Greg is making that we need to provide compassionate care for very ill people as you say in the report is absolutely crucial and we can do much better.

CHAIRMAN KASS:  Rebecca Dresser please.

PROF. DRESSER:  I would like to ask you both about, I guess, the component of this that interests me the most which is getting better at ascertaining how patients will experience treatment interventions and continued life in that circumstance.  I guess, I'm not a physician, but my sense is there's under-appreciation of the way that dementia affects how people experience various things even things like a shot, but certainly a lot more ongoing things.

And I thought Dr. Sachs, Greg's article, in JAMA with the case example of the woman, I forget the name of the medication, but it was bone strengthening.

DR. SACHS: Bisphosphonate.

PROF. DRESSER:  Right, bisphosphonate, how that didn't work with her and that's a treatment that I think an ordinary person would say, "Oh well.  That's simple.  No big deal."  So I guess I would like you to talk about those things and also in the Journal of General Internal Medicine, Greg, you talk about two cases, one where a family chose tube feeding and IV antibiotics and one where a family didn't and the patients were similar.  I wonder if you thought one was better for the patient than the other or they were both good care in a certain sort of way.

DR. SACHS: I'll start with the last one first.  I think when I was younger I would have been much more upset at and resistant to participating in the care of a patient who had the repeated hospitalizations, the tube feeding and the IV antibiotics over so much time.  I would have probably felt like I was inflicting more suffering upon that individual.

But having worked with families with, as those two cases indicate, a range of feelings about how they view the effect of the illness on the individual, that family in particular, that was still  mom.  They were very devoted to her, very much felt like this hadn't been this great deforming sort of illness and that by doing all of these things and taking all of this time to get to this point of choosing hospice that they were really filling their obligation to her and that felt right for that family and for that patient.  It felt sort of very genuine and reflective of what that family and patient had been like.  So I ended up feeling good about that case on a level that I think I didn't think that was possible 10 or 15 years ago.

The other family was a very intellectual, high functioning, academic, professional sort of person and it really was about the life of the mind.  They felt like he had been gone for quite some time.  So it really had to do with a very different view.  I don't think it was in a sense the value of life, but what it was worth putting somebody through given those circumstances.  I think those stake out a range of options and as you get more towards things that are more burdensome and that increase the suffering of an individual or prolong suffering the more I have felt compelled to advocate for foregoing those kinds of treatments.

The first one about the use of that medication, in particular of bisphosphonate, the instructions if anybody isn't familiar with it, you have to take the medicine like that on an empty stomach when you first get up, drink it with an eight ounce glass of water, stay upright, drink or eat nothing else for the next 30 minutes.  Now I have patients who are cognitively intact and 70 years old who complain about that.

So if you can imagine some caregiver trying to get a patient to do that or even for normal preventive things, doing a prep for a colonoscopy, that is not something that's easy to do with an uncomprehending, resistant and frightened patient.  Many of the things that we think of as being no big deal to do to people medically, people tolerate because they understand it, they see the end, how it's going to help them, they put up with the adverse effects, they put up with the pain.

When somebody can't appreciate that and doesn't even appreciate that they have an illness or why do I need a mammogram, you're talking about another level of burden that you are inflicting upon the patient and then trying to get the caregiver to actually put somebody through that.  You're actually adding to their suffering in a sense.  So I think there are ways in which much of routine medical care should be reexamined when thinking about somebody with  dementia and look through those glasses as whether or not they're appropriate.

DR. RABINS:  If I can take two minutes.  When Dr. Kass called me to ask me to do this, I told him that I wanted to make sure that the patient with the disease wasn't left out and I didn't really address that.  After I said that, then I thought how could I possibly even do this and one of the things that I do educationally is to make teaching video tapes and now DVDs.

It turns out that with a group at the University of Maryland and the two that I've made this year, one is on end-of-life decision making and care.  The second is on what might it be like to have dementia.  And that might be part of this.  So with indulgence, if I can get this to work, I would like to show this.  This is not a patient of mine.  This is someone that was made available, her name is Shana, through the University of Maryland Geriatric Education Center.

(Video plays.)

DR. RABINS:  And I am sorry.  I don't want to take too much time but I think part of the answer to that, Rebecca, is that you can empathize with people with Alzheimer's Disease.  I think you can imagine what it might be like as Greg said not to understand why you need a medical test and even at the end-stage of the illness, I don't think we can lose sight of the fact that these are individual people just as these are individual families and so there isn't one right way to do things.  But that we can imagine that things that for us are not upsetting or frightening would be extraordinarily distressing.

That does need to be taken into account.  I think sometime both on the positive side of deciding when somebody's trying to decide whether they should do something or to not do that I inject that into the conversation with the decision maker.  Sometimes they don't, I feel I can be a little bit more objective in a sense particularly if it's a patient that I've known for awhile in capturing their personhood a little bit.

CHAIRMAN KASS:  Diana Schaub.

PROF. SCHAUB:  Yes.  I wanted to ask a question about one statistic.  You said that 75 percent of those with the disease are unaware that they have the disease.  Is that just because of the point which diagnosis is made?  That it's usually not until the second stage and would that shift if diagnosis were made earlier?

Then a further question, would that be good?  Is early diagnosis something you want with Alzheimer's?  It's certainly good if you have cancer and we've made a real push for early diagnosis.  This may be related to the question about whether we want to focus on prevention and cure or whether we are concerned with caregiving.  If we're concerned with caregiving, is a certain obliviousness  until things reach a certain point or not good?

DR. RABINS:  Is that good?

PROF. SCHAUB:  Is it better for patients and families to know what's coming?

DR. RABINS:  I think to your first question there's only been a little bit of research on this insight issue.  But both clinical experience and  a little bit of research that there is available suggests that this loss of insight is from the very beginning.  That most people never can appreciate that they have a problem.

In a way, I think of it in two ways.  One is if your memory is bad how do you know you've forgotten something because you don't know you were told it five minutes ago.  I think that is actually part of it.

I think part of it actually gets back to agnosia.  I believe it's neurological inability to appreciate a deficit.  Again, the reason I say that is that you don't see the same rates in other dementia.  Its loss of insight, I believe, is less.

You asked what I think is not only an interesting question but actually I've just finished another study that I hope will answer the question of whether early recognition makes any difference.  I'm enough of a skeptic to think that is a reasonable question and it worries me that $60 million is being spent now to identify people earlier when we don't have a treatment.  On the other hand, I can understand that if a treatment came along tomorrow we would want to do it.

So again, my personal belief at this point  is that in thinking about this from a more ethical point of view if there are no problems I don't see a good reason, a strong reason, to push everybody to get evaluated.  The one justification I actually can see  for earlier recognition of a problem is to get people to have conversations about the very issues that you're discussing here.  I think most research shows that many people don't have those discussions until they're faced with an issue.  And if we could say "You have a very mild memory problem and we would recommend that you have these kinds of conversation," that to me would be a benefit.  I'm not sure that would happen.  So I don't personally think that screening everybody right now is a benefit.

The other thing you asked, is it good that there's no insight, this probably gets to my own values.  I think in the end the answer is no.  I believe that particularly in our society where we think our medical information is our own, that to not know deprives people of planning, having conversation.  So I think people should be able to know.  I don't know if that's quite the question but I think it's a tragedy in a way that they don't know and yes, maybe it's nice that it protects them from the horror of this.

But people used to say that about cancer.  In the early 1950s, a survey was done in the United States in which 85 percent of doctors said you shouldn't tell someone they have cancer.  Of course, now you would find 100 percent of doctors who would say you should.  That's a cultural change that hasn't happened in France or Japan where you still don't tell people directly.  So I think at least in our culture knowing we value that and it's a tragedy that people don't recognize it.

DR. SACHS: Since I've already been characterized as being more skeptical or pessimistic, I actually remain worried about the push for diagnosing people earlier.  The U.S. Preventive Services Task Force when they reviewed evidence for screening dementia, let alone something earlier like NCI, said that there really was not evidence currently to favor or really against doing it.  We don't have good screening tools and we don't have effective treatments.

So what they talked a little bit about in their report was being concerned about that also don't know about the effects of labeling people and there have been a few studies that have looked at the impact of giving the diagnosis and some of them in the caregiver's perception of what having a diagnosis did or did not do and some cases it had negative impact on people, changed relationships.  They were more likely to end up questioning every sort of little mistake that somebody made.  They were drawn to the negative.  So I think that in a sense it's an empirical question and I'm eager not to start labeling people unless we have more evidence or unless they're coming to me for an evaluation.

I have my primary care geriatrics practice and my memory center practice.  People who come who want to be evaluated, we do the evaluation.  My own patients who like the coordinator at the front desk says, "Oh, Mr. So and So is having problems with her appointments.  She's starting to slip."  We look at is she managing okay and if she's still getting by and has her family support and stuff, I don't push right hard to make an early diagnosis given our limited armamentarium.

So it really to me depends a lot on what they're looking for individually as they come to me.  For the policy society-wide, I think we need to hold off.

DR. RABINS:  If I could add one more thing if I may.  I totally agree with Greg.  The one instance where I think screening may be appropriate is when people come into a hospital because we know that there are very high rates of delirium.  The strongest  risk factor for delirium is having an underlying dementia and there's good evidence that preventing delirium has a huge positive impact.  So that might be the one place where screening might be beneficial.  But otherwise I agree with Greg.

DR. SACHS: I agree with that actually.

CHAIRMAN KASS:  We have to stop.  We have a session that will begin at 2:00 p.m. and it is already 12:30 p.m.  I want to thank you both for really just wonderful presentation and forthcoming discussion.  I want to stress my appreciation, Dr. Rabins, for your reminding us what a small slice of the caregivers' concerns we have taken up in this report and you, Dr. Sachs, for calling our attention to the incentive questions and this larger thing.

You said you had things that you'd have to suggest.  If we'd asked you if this were half an hour earlier, I would ask you, but I might ask you if you wouldn't mind if you would jot some of these things down to make sure that these suggestions are put before us as we begin to think of some of the public policy matters and how to begin to shift some of these incentives in the service of the better care not driven by these sort of perverse factors, I think that would be very useful to share around the table.  We're adjourned until 2:00 p.m.  Thank you both very much.  Off the record.

(Whereupon, the foregoing matter went off the record at 12:30 p.m. and went back on the record at 2:13 p.m.)

SESSION 3: ETHICAL CAREGIVING IN OUR AGING SOCIETY III: PUBLIC POLICY PERSPECTIVES

CHAIRMAN KASS:  Thank you very much.  Apologies to our guests for this tardiness.

We reconvene on a session entitled "Ethical Caregiving in our Aging Society:  Public Policy Perspectives."  We move in this session from clinical practice to public policy.  Once again, we have invited two people very well-versed in the public policy questions, both in terms of scholarship and in terms of practice.

Both of them have seen the recent draft of the report and have been invited to reflect as they wish on our working relation to ongoing activities and practices, possible suggestions for further development and extension of this work, but also to help us identify key public policy areas in need of attention and reform that we might not have dealt with adequately at all.

We are very pleased to welcome Professor Robert Friedland, who is the Director of the Center on an Aging Society, also Associate Professor in Health Systems Administration at the  School of Nursing and Health Studies at Georgetown University, an economist by training as I discovered.  It's not absolutely clear from his writings that he is only an economist, but he is an economist and then some.

We are also very pleased to have with us Monsignor Charles Fahey, who is the Director of the Third Age Center and Professor Emeritus of Aging Studies at Fordham University.  As you can see from the short and unduly modest biographical sketch that he has provided us with, he has been in this business for a long time, was a charter member of the Federal Council on Aging and was appointed by Presidents Nixon, Ford, and Carter, the last of whom made him chair of this council.  He has done every conceivable thing.  He has been working on these matters.

Welcome to you both.  We are grateful for your presence.  The procedure will be as follows.  We will start with Professor Friedland, and we will ask Monsignor Fahey to speak.  If there are questions for information in between the talks, we can have them then.  Otherwise we'll save the general discussion for the end.

Thank you very much.  Professor Friedland, please?

DR. FRIEDLAND: Thank you very much.  I am really delighted to be here on a personal level.  And from a professional level, it is wonderful that you have decided to add this to your list of things that you have taken on.  This is an area that is neglected.  And it's terrific that an august body like you has decided to think about these issues.  As you know as well as I now, these are very difficult issues.

So I would say that most of the public policy attention on long-term care has really been about the formal part of the care.  And you have taken on the informal part.  The formal care.giving is approaching $200 billion per year.  And maybe three-quarters of that is for institutional care, nursing home care.

The specific concern is really the sustainability of Medicaid, which is sort of getting all of the political attention, which currently finances almost half of paid long-term care services.

In a recent report on Medicaid reform, the National Governors' Association concluded that "Medicaid can no longer be the financing mechanism for the nation's long-term care costs and other costs for the dual eligibles."

The dual eligibles are in many ways the most medically needy of our society.  They are people who are on Medicare and whose incomes and assets are so low that they're also eligible for Medicaid.  And, believe me, they need both because they need a lot of long-term care and they need a lot of prescription drugs.

And, heretofore, Medicare didn't cover prescription drugs.  And so Medicaid was critical to this population, very small population, six million or so people.  And, yet, it has been a major concern for governors worrying about their Medicaid budgets.

Certainly the lay of the land has been changed a little bit or altered, if you will, by the Supreme Court finding in Olmstead, has affected and in some sense added important ammunition, if you will, to the efforts of states to expand home-based community services.  In fact, they were moving towards doing it anyways, but they have accelerated that effort.

Most long-term is not provided in a nursing home.  Most long-term care is not paid-for care.  Most long-term care is provided by family, friends, and volunteers.  It's provided mostly in people's homes, where people live.  And a relatively small percent of the long-term population lives in an institution.  Yet, as I've said, institutions represents three-quarters of the long-term care expenditures.

But in some ways, as difficult and fragmented as the system is, really, these are the best of times that we have ever had in the system.  There has been tremendous growth in public money for long-term care generally.  In the '90s, for example, from 1991 to 2001, the Medicaid spending on long-term care almost doubled, from 44 billion to 76 billion.

There has been a tremendous growth in home and community-based care; in particular, as states try and rebalance their systems.  The systems are out of balance in this sense.  All state Medicaid programs must cover nursing home care.  So it is a mandatory service.

They are not obligated to come home and community-based care.  When they do do it, they can set it up as a program across the state.  Only a few states have done that in personal care services.  Most states have done it through what is called Medicaid waivers, waivers meaning some change, asking for permission to do something different than in the rules.

So because the institutional care is covered, there has been a bias in the system because help was available through the institution but help was not available outside the institution.  So there have been tremendous efforts on the part of states to move care out of the nursing home, particularly when they think, if they think, which they all do — and I'm not sure it's true, but they all think that it's cheaper outside of the nursing home.

What is true, though, is cheaper outside of the nursing home is that you can buy smaller increments of care.  You can buy a few hours of care, instead of having to pay for the whole day of care in a nursing home.

But this rebalancing has meant that, even in this period from 1991 to 2001, the expenditures in home and community-based care in Medicaid have more than tripled, from 6.2 billion to 22.2 billion.

Now, I will point out that makes a big difference in the community infrastructures, but most of those programs are waiver programs, meaning that the state doesn't have to open it up for everyone in the state.  It could be set for a special population in the state.  It could be set for a special area in the state.  That is what the waiver means.  It doesn't have to be statewide.  It doesn't have to be population-wide.

Most of that money, 75 percent of that money, in these home and community-based waiver programs are actually for the mentally retarded and developmentally disabled population.  A very small percentage of it is for the population that you focused on, which was the older long-term care population, unless they fit into one of those other categories.

All states have reorganized or looked at or reaffirmed or at some level looked at how they organize the information referral systems.  The money from the Older Americans Act has helped to do that.

And persons at greatest risk, people basically 85 and older or 75 and older, had on average more children from which to tap for assistance.  They are, of course, the parents or soon to be the parents of the baby boom.  And so by definition, they had more babies per woman.  So these might be in some sense the best of times, even though there's a lot we can say that is difficult and wrong and inappropriate in the system.

It's fragmented.  It's inefficient.  There are a lot of aspects that are unfair.  No one is happy with the current system, you know, not the governors, not the Medicaid directors, not the federal officials, not the families, not the caregivers.  There's just nobody happy.  It is much too victim-based.

There is not a pooling of either the access to care or a pooling of the financial risks, like what to do and how to find care and never mind how to pay for it, even if you're not going to pa for it, even if it's going to be through family arrangements, what to do, how to set it up.  But there is just not enough risk sharing in that enterprise of learning what to do.

Certainly people are living longer with chronic conditions and, hence, face an increase in their lifetime risk of becoming dependent on others.

Informal care is critical.  I would say it's critical in all aspects of health care.  No one is in charge of the long-term care system, at least, rightly or wrongly, in the medical system.  There's someone in charge.  It's the physicians that are in charge.  They're even in charge of the hospitals that they don't run.  You know, they have a lot of authority.  And that is an important glue that holds things together.

But health care, even health care, even in the confines of the six walls of the hospital, it can be pretty chaotic.  I would call it maybe organized chaos, but even in those situations, families find that they need an ombudsman, someone in the family to make things happen, even in the confines of that walled environment in which the physician is in charge.  long-term care is just chaos underscored by anxiety and guilt.

So I would say that you need a caregiver in the hospital setting.  And the further away you move from a hospital and certainly as you step away from where the physician is in charge, it becomes even more fragmented and more difficult to negotiate.

So the primary caregiver is critical in this arrangement.  The primary caregiver is the one, usually the one, could be two, but the one who takes the responsibility to organize the care.  Maybe they provide all the care.  Maybe they don't provide all the care.  But someone has to be in charge of organizing the 24 hours, especially if you're talking about an Alzheimer's patient, that one needs to cover for.

They're often the one who provides the most care.  It's usually the spouse or adult child, more likely to be the wife, daughter, or daughter-in-law.  The importance of caregivers is directly related to our failure as a nation to focus on the risks in a very serious way.

We need caregivers in the health care system.  And, yet, we recognize the value of the medical care system.  And we have a very elaborate system of referrals and moving patients from one part to the other.  And, still, it's messy, but we don't have that in the long-term care setting.  And so we have put all of that pretty much on the family.

And not facing this risk does not diminish the need or the cost of the care, it's there.  We pay for it other ways.  We pay for it in more suffering.  We pay for it in more anxiety.  We pay for it in the well-being of the caregiver.  We pay for it in the well-being of the person receiving the care.

Everyone is at risk of becoming a caregiver, but access to information and services is not even.  Sometimes who you ask as the information you are going to get will matter.  Actually, very often the physician is not the right person to ask.  They may not know, but it's the right starting point.

There is a very steep and uncertain learning curve.  It's amazing to me how many of my colleagues enter this who are professionals in this field don't know what to do when it's their own parent.  It is, in fact, I suspect because of the other aspects, but it's also really making these decisions now.  So there is a huge learning curve.

The consequences of all of this are not insured or well-mitigated in any particular way.  So it's psychologically exhausting, physically exhausting, financially exhausting.

The caregiver of today, like the caregiver of the past, tends to over-extend themselves to provide the care, putting their own health, their marriage, their relationships with others, their future financial security at risk.

So what are the public policy options?  Well, looking back, what policy options had been on the table?  And if you go back 20 years, you find that they've all been on the table.  Everything has been on the table.

Just looking at past six to eight years, most of the tension has been a little more focused.  So when I say "everything," everything from national insurance program for long-term care; that is, full, comprehensive coverage, to minor incremental things, all aspects have been discussed but never taken very seriously.  That is, it was never on the table in a way that it looked like it was real.

The past six to eight years, most of the focus has been on tax credits for caregivers, more public incentives for the purchase of long-term care insurance.  I say more because there are incentives now in the Tax Code, but these are to make it even more explicit.  And in the meantime, families are really struggling to figure out what to do, how to do it, whether they are doing the right thing.

So if we talk about building on the current structure, then we're talking about providing tax incentives to encourage future generations to purchase long-term care insurance.

What's also on the table at the moment is something called the Partnership with Medicaid, which is a way of using public resources to encourage the purchase of long-term care insurance without having to actually up front spend those resources.

If you provide a tax credit for insurance, then you are foregoing tax revenues the moment that the person buys the insurance.  If, instead, you say, "We'll make a deal with you.  Buy insurance.  And we'll change the rules for you for Medicaid if you need it," then you haven't put any up-front public money into it.  The money if there is any money .. and I think there is .. it's in the back end when you become eligible for Medicaid easier, faster because you bought this long-term care insurance policy.

Those who promote it believe very strongly that the private insurance will save Medicaid money.  I think that's an empirical question that will depend on a lot of factors coming together.  And my best judgment is it will cost Medicaid money, but it won't cost any money right away because you won't be selling the insurance policy to someone who needs Medicaid tomorrow.  You'll be selling the insurance policy to somebody who passes the underwriting screens and isn't likely to use it.  And, therefore, you use public money to leverage private insurance.  But I think it will cost money later.  But even if it does cost money later, it's not going to be scored by CBO, the Congressional Budget Office, in a way that is going to cost a lot of money.

So the Partnership with Medicaid, whether you're doing it, proposing it for that reason, because it's not up-front public money but it may be back-end public money and perhaps the possibility of no public money or whether you ideologically believe that's the way to go is getting a lot of attention.

There are five states that had permission through the federal Tax Code to do it.  Four states went ahead and did it before the Congress, particularly Congressman Waxman, put a stop on it, on states being able to do it.

So there are four partnerships.  There are five states with permission, four states who are doing it.  And there is a desire on some .. and this is being debated or could be debated.  I don't know what the agenda is going to look like after the hurricane, but could have been debated in the next session as a way of expanding private insurance.

Something that has occurred at times could occur in a bigger way is teach Medicare beneficiaries about long-term care coverage in Medicare.  The notion is that most people think they have full coverage for long-term care.

The simple answer is they don't.  The more complicated answer is they sort of do, but they don't because what health insurance covers and what Medicaid covers is as opposed to acute care and looks like long-term care because it's in a nursing home.  But it's really a substitution for acute care, inpatient care.  You've got to tell people that they don't have good coverage for long-term care, and maybe that will encourage them to do something else.

I think the difficult part for the government is to say, "We don't cover it but don't have an answer of what to do about it."  You know, I think the political answer is "Buy insurance."  It may not be satisfactory.  I don't know.  It's a dangerous position to be in.  And the government has tried to do that without being very explicit about it.

Provide more funding for information referral programs.  These programs are often poorly funded, certainly provide tax credits to caregivers.  Often that's linked to the incentives to buy insurance as a political we're going to give something to caregivers.  We're going to give something to people by insurance.  And that will take care of the future.  But the problem is both of those things cost money.

Another possibility that has not been really talked about is providing respite benefits through Medicare, that hasn't been really talked about lately is provide respite benefits through Medicare.

Another thing that has not been talked about lately is to expand Medicaid coverage of home and community-based care in a way that is more congruent with the way we treat nursing home care.

Another thing that has not been discussed in a long time is requiring employers to pay for some of the leave employees take to provide long-term care.  As you may know, employers of 50 or more employees are obligated to hold the job for someone who is providing care, but they are not obligated to pay except in California.  But there are mechanisms that could be put into place to do that.

Well, I would say that incremental changes are just that.  And there is a long list of activities either underway or in discussion that could help support caregivers and could make a big difference in one person's life.

I guess the question is, how much more would make a significant difference or do we need more fundamental structural changes?  I guess you know where I am heading.  I think without structural changes, it is likely to be harder for caregivers in the future.

And I think, just to make a side comment about the report, you have a sense there is a crisis now.  I don't think we have seen anything yet.  I would call these the best of times.  I mean, I think when we get to the real crisis, these are going to look like the good old days.

I think potentially further declines in mortality rates, faster than declines in debilitating morbidity rates may increase the lifetime rates of dependency.

After 2015, the numbers of people needing services are likely to begin to increase faster than the supply of workers available to provide services.  This will result in relatively larger price increases for all payers.  And, of course, the big payer is Medicaid.  Medicaid is going to have bigger budget constraints or concerns than they have now.

The same decline in fertility rates that has caused a slowdown in the labor force also means less children per mother.  So the decline in fertility rates since the mid 1960s will mean far fewer adult children upon whom to turn for assistance.

So everything that is great about our current system or unfair about our current system may be worsened by 2030, imposing even larger risks on caregivers.

So I think we ain't seen nothing yet given the fact that we have the baby boom here for their parents.  As difficult as that is, the next generation isn't going to have the baby boom of children behind them.

I think the key is to think about what kind of long-term care system we want for our grandparents.  And I often think about my children, what kind of long-term care system do I want for my children, because I don't expect to be here to take care of them when they are old and really have more of a public dialogue about how to sort out the role in which caregivers as adult children to our own parents and as children, as adult children, ought to participate in the care.

What we know is that parents do not want to burden their children, but parents want to do everything they can for their own parents and to the extent that they even can harm themselves and also the person they are caring for.  I mean, it's not always a healthy situation in all circumstances, in all that care.

Let me make a few words about the potential for private insurance.  I have been writing and thinking about long-term care insurance before there was a national market for long-term care insurance.  I am not exceptionally happy about the way that market has developed, even though I have been a long-time champion of the notion that long-term care is an insurable event.

But when I started writing about it, the national companies, the big companies, were publicly denying that long-term care is an insurable event.  They said, "We don't know if it is an insurable event."

Well, they got into the business.  And some of them decided it was a mistake.  But the private voluntary long-term care insurance market is growing like gangbusters, particularly for a couple of companies that have done really well.  They're making a lot of money.

But it's not likely to provide the impetus for structural change in the next 25 years.  The population covered is too small, not growing fast enough to really make a fundamental difference in the financing of the long-term care.

I think, more importantly, long-term care insurance is not like health insurance.  Health insurance, you can have a debate about what is medically necessary.  You can have a debate about the protocols that one needs to go through or what kinds of steps you have to go through to get a referral.

But in long-term care insurance, you're not buying coverage.  You're prefunding a risk that you choose to cover.  It's a great device, mostly because of the tax benefits, because other people drop coverage.

So it's a great device for prefunding.  You can do better prefunding and through this instrument than on your own, but it's not necessarily going to cover long-term care.  So it is not going to have a large role.

It currently is in the national income accounts as spending part of long-term care.  Most of those dollars are health care dollars paying for cheaper than nursing home care, which is cheaper than inpatient care.

So most of the dollars being spent in long-term care through health insurance is through private health insurance, not long-term care insurance.

So there have been disparate but small steps.  But, for example, some of the nursing home industry realized that they really have to change.  There has to be a paradigm shift in how they deliver care, how they organize care.  But there are just a few places that are trying to do that.

Most of it is being done I think for the right reasons.  The main thing they're worried about is turnover, staff turnover.  They're trying to retain staff.  And that is good for quality care.

But their main focus is on delaying turnover, staff turnover, which, as I said, is good for quality care, but there is no other real attention outside of the nursing home on how best to deliver care.

The topic in the last 20 years has moved from the front page, which was all about the disasters, mostly fire and safety code disasters, in nursing homes to the style section, which provides opportunity for a broader discussion, but it really hasn't taken off in any meaningful way.

So far I don't think there's been enough of that kind of discussion to provide permission in my view.  What policy-makers need is permission to lead on this.  What they can easily say is, "I care about it, but it costs too much money."  And then that is the end of the discussion.

I think if we really care about caregivers, we need to value them.  The starting point in a small way would be to talk about tax credits in a different way.

Families with the same income should not pay the same taxes if one family is providing care and the other is not.  We should view that as an equity issue, not as a sort of financial payment or incentive for people to provide care.  They're going to provide the care as best they can.

And the $3,000 is not going to make a huge difference in whether someone leaves their job or not.  Okay?  It will affect the low-income person.  I don't want to minimize it, but to talk about it in the way it has been talked about doesn't value the caregiver.

If we talk about that it's the fair thing to do, it's the right thing to do from an equity, tax equity, perspective, then at least we're beginning a discussion in the right sort of tone.

There could be real meaningful expansion of resources for information referral and training, training of the nonprofessional family caregiver, how to lift without hurting yourself.

Another possibility or route for that could be a respite care for caregivers of any age provided through Medicare.  It will not break the bank of Medicare and certainly perhaps a discussion with employers about paid time off for work for caregivers.  It could be financed through taxpayers, but it's real money.  But there are ways of doing it.

And if we do these kinds of things, all of these are incremental at some level.  But they acknowledge that we do value caregivers, what they're doing.

I appreciate what they do, and I very much appreciate having the opportunity to talk to you about this topic.

CHAIRMAN KASS:  Thank you very much.

Questions for information?  Dan Foster?

DR. FOSTER:  One question about the private long-term insurance.  You pointed out that the amounts are usually pretty small.  What is your assessment of given the financial viability of such insurance plans and companies?

Do projections suggest that this really is viable or is this a way of getting a significant amount of money and then coming up six years, eight years, ten years from now saying, "Well, we're bankrupt because we can't pay that"?

DR. FRIEDLAND: I think they are absolutely viable as a business enterprise because of the way they are structured.  The risk is not on the company.  The risk is on the individual.  The risk is inherent by what you decide to purchase.

You basically say, "I am going to buy a $200 a day policy."  And maybe it's going to have an inflation protection in it, but the inflation is pre-prescribed five percent per year, regardless of what the real inflation is.

So that is just money.  And actuaries are very good.  It is surprising to me, actually.  I went to one of the meetings with the actuaries.  And I was shocked that they had miscalculated the long-term federal bond rate.

And, as a result .. here is an example of why this is a great business model.  As a result, they can raise the premiums.  So if you mess up on something as .. you know, I was shocked because I would have thought the bond rates, maybe because I am an economist, would have mattered a lot.  Since you're talking about holding on to this pool of money and investing in it for 30-40 years, the long-term bond rate matters a lot.  And, for some reason, they hadn't sort of thought about that as much in their models.

But, at any rate, they have a way out.  If they mess up, if the bond rate turns out to be a lot lower than they expect, if the lapse rate, which turned out to be; that is, the people who buy the policy and drop it, if the people hold on to the policies longer than they expect, which also occurred, they go out.  They can raise the premium for the class.

They can't raise it for you because they don't like you or they don't like the color of your eyes.  They can raise it for the entire class of policy.holders.

So, in other words, if they mess up on the premium, they can charge everyone who bought it and say 10 years from now, "You know, we have to raise the premiums another $100 a year."

They do do that.  There are some that have been raised.  The belief was they purposely lowballed the premium.  I can't say that they really did, but there were a couple of class action suits that were settled when the premiums went up 700 percent.

CHAIRMAN KASS:  Still questions of information, rather than expand to discussion.  Robby and then Frank.

PROF. GEORGE:  Thank you.

Yes.  I wanted to follow up on Dr. Foster's question about the insurance companies; really, two quick questions asking for clarification in your opinion.

The first is you noted that a couple of companies had made a lot of money.  have they made a lot of money because they are offering a quality product to the consumer or are there other reason?

And the second thing is, there are I gather from what you said a couple of companies making a lot of money, but a lot of other companies found that they couldn't.  What accounts for the shake.out that leaves us with only a couple of companies that are really, I gather, viable?  And are we now going to have a monopoly effect as a result of that?

DR. FRIEDLAND: Well, I think we do have a monopoly effect already, even though there are more companies than I have portrayed.   I mean, there are many companies.  Most of the market is dominated by a couple of companies.

I think it is absolutely viable from their perspective.  Your question was, are they selling better products?  You know, as you know, when you buy this laptop computer today, it's obsolete a couple of years from now.  But you know that going on and you don't really care because five or six years from now, you'll buy another one.

It's a harder thing when you buy a long-term care insurance policy and the policy design is changed because you only buy a long-term care insurance policy once.  It's a lifetime decision.

There are very few products that you buy for the lifetime.  Even your house, you probably buy more than once, buy more than one house.  You know, you use the equity in your house to buy another house.  But you can't do that with a long-term care insurance policy.

Are there good policies out there?  I don't know what "good" means.  You're asking somebody to look at their current circumstances and make a decision about whether their adult children will be alive, whether they will still have a spouse, what their circumstances would be 30 years down the road.

Can you buy more bells and whistles?  Can you buy more comprehensive coverage?  Yes.  Can you buy nonforfeiture coverage?  Yes.  All of these things add lots of money to it.  But you're basically just buying money.  You're not buying coverage.  I'm going to buy a $500 a day policy.

And what excludes Mayberry and whether or not you get any money back if you stop making premiums may be a part of the policy.  But you pay for that money.  So I think it's a good deal in the sense that if other people drop the policy, then, and they bet that correctly, then the premium isn't going to go up and those people do very well.

So I can't answer your question.  They are not insuring the risk.  They are insuring what you define to be the risk.  And they do a very good job at that.

CHAIRMAN KASS:  Frank, still for information?

PROF. FUKUYAMA:  Partly for information.  Maybe it expands the discussion a little bit, but from what you've said, it just sounds like we are piling up a really large future social liability that is unfunded currently given the sources of how we pay for this.

Now, one it seems to me straightforward solution is .. you want to expand the pool of risk.  Some very straightforward way of doing this would simply be to mandate a kind of means.tested mandate that everybody buy insurance for this, which would drive down the average cost for everybody.  And it doesn't affect the balance sheet of the government because it's all privately paid for.  So it's, in effect, forcing people to save.

Can you just talk through the politics of that?  I elan, who is going to object to that?  What coalition of interest groups is going to shoot that down?  And what kinds of arguments are they going to use against that kind of an approach?

DR. FRIEDLAND: Well, I think, actually, the insurance industry would be opposed, I think, to a mandatory .. I think that, you know, they have no desire to cover everybody.  They just don't.  They want to cover those that are going to be able to continue the payments, those that are lowest risk.

I mean, there are a lot of ways of doing very well and doing good for people, too, without necessarily covering everyone.  So I think one aspect of the politics might be the industry itself being a little frightened about the government saying, "You've got to cover everyone, and you've got to have these rules about it."

I mean, can I exclude people who have had a heart attack?  Is there governmental oversight in the rates that I charge?  So I think they would be very nervous about a mandate for private insurance that would involve government oversight about how they do their business?  Does it have to be a standard benefit package?

So they want to freedom to design it and sell it.  On the other hand, they want government effort in getting people to want to buy it; i.e., the tax incentive.  You know, give me more tax incentives, and I can then make it easier to sell.

It's a very hard product to sell.  It requires an agent sitting down with a couple at their kitchen table.  It's a very expensive product to sell that way because you usually have to do a couple of visits.  And then, of course, you have to pay the commission.

I think from the public side, there may be groups that are opposed to the mandate of private insurance.  Why not use a social insurance, they might say?  Why run it through that commission system?  Why run it through those various structures, of which you would have administrative structures?

The commissions are not insignificant.  If you've got salesmen, they're competing with why my product, as opposed to another product.  And that might be good because it gives consumers choice, but then if the government is forcing you to do it and subsidizing the low.income people, I would imagine the government might want to say something about what it is that is being sold and how it is being sold.  And the private sector might resist that.

CHAIRMAN KASS:  Let's hold further discussions and turn the floor over to Father Fahey.  Thank you very much.

FR. FAHEY:  I must admit to being almost speechless for the first time in my life as I hear all of these things.  And I have all of these notes, and I say, "But I want to correct what he had to say" or modify or whatever the case may be, never correct but build upon.

And I would say at the outset I have been wandering around this field since 1961.  So I was there before Medicare and Medicaid and actually was a participant in those discussions in one of my former lives.

There are really a couple of things that tend to situate myself at this moment.  Some of you may know there is a relatively new commission on quality and long-term care that comes out of the private sector.  It's chaired by, of all people, Newt Gingrich and Bob Kerry.  Present company excepted, it is a distinguished group of people.

The weakness of the commission is that few of them are really into long-term care, but they are of such standing that if the commission can get its act together, if we are able to, it could have significant impact upon quality in the system as we know it or as our leaders are very anxious to do, move forward to what should the system be in the future.

The second, I work with the Milbank Memorial Fund as a program officer.  And among the things that fund does is try to bring together decision.makers from the private and public sectors who would not otherwise be able to come together.  And one of the structures that we have, we have a reforming state group, in which we have all 50 states, somebody from the governor's office, somebody from the Legislative Branch, nonpartisan.

They create their own agenda.  And we, in turn, program officers, facilitate their conversations and try to follow through as they define themselves of X states coming together to talk about the cost of pharmaceuticals or what is on everybody's agenda at this time:  how do you pay for long-term care.

So all of those factors are a part of my being and thinking, in addition to all the experience over time.  But there is one other.  And I'm hesitant to do this, but I think I might.  You've got a piece of paper of 30 pages or something.  I think everybody has, at least what I was thinking at the time I wrote the paper.  It may not be what I think now but what I was thinking then.

I want to tell you another story, and that is of being a son.  I am 72 years old.  Okay?  When I go home tonight, I will write a check to a long-term care facility for my mother, who is 97, had her 97th birthday September the 3rd.

It will be the last time I write the check myself for the total care because between my mother and my father, the cost has been $400,000 in terms of their care throughout their lifetime.  My father died ten years ago, at 89, after a period of frailty.

So in a sense, it's atypical in that I am an only son and, of course, atypical that I am a priest.  But there are many times that are so typical in this experience that it might be worthwhile to talk about experience for a moment and abstract from it in terms of some of the things that we are talking about but in flesh it, if you will, just a little bit.

One of the first things, I'm not sure that you brought this out in the report sufficiently, but you know we now have four generations alive as normative and sometimes five.  So we have two generations in retirement.

Then you add on to that the change in the American family and so on, divorce, remarriage, non.marriage, and you do a sociogram through significant others in a lifetime.  It really is fascinating.  Of course, that is part at the heart of all of this, who is responsible for whom under what circumstances.

Honor your father and your mother.  For heaven's sake, which one?  It's extraordinarily complex at the very most foundational element.

I suppose that's the second thing I want to state out of the back.  When I give talks, often the title of it is "It's never been this way before."  So the development of a third age that is necessary neither for production or reproduction is the first time in human history we have had it.

So neither culture nor social structures have kept up with the realities.  And, of course, public policy hasn't kept up with the realities either.

So having commissions like your own is extraordinarily important to delve into the very most fundamental aspects of this.  Again, we're in an epidemiological and demographic revolution caused by all the stuff in public health particularly and so on.

So we're in a very different set of circumstances.  And in the broad sense, it's a huge economic issue, economics being managing the household.  So it's how do we manage the most fundamental household, where the coin of the realm is love, guilt, responsibility, and all of those things?  And how dominant should that be in this whole area of long-term care?

Of course, the second, economy is the mercantile, if you will, the exchange of goods and services for money.  What money does, really, is to get somebody else to do something that they wouldn't otherwise do.

And so in this area particularly, what we do is we buy services or places when the persons or the places to give care are not satisfactory or not present.

So there is a great overlap between the two of formal,/informal, paid/non-paid.  And the great ethical issue is to some extent who should bear the burden and under what circumstance, if you will.

Again, that is the third of the economies that we have to kind of balance in all of this ethical reflection.  And that is the political economy in which the power is of the state to cause things to happen through threat or through incentives or whatever they are.  And they are a huge actor in all of this.

So in our, your kind of reflection, here you have got the individual and the socially significant people and their lives.  Then you've got state government overlapping.  Then you've got federal government overlapping.  And then all of this is within culture.

And we have this changing scene of how are we going to sort all of this stuff out with the change in the structure of the population, which is extraordinary?

And, as Bob said earlier, what we're talking about is establishing sustainable, predictable, fair structures that will be there over time.  Sometimes I think people sort of have in their mind we're talking about those old people now.  But what we're really talking about is, how do we have just structures that are equitable and adequate, through which we will all pass over time and that are sustainable, if you will.  And this is an extraordinarily complex area.

Now I want to go back myself for a minute, if I may.  I grew up in Syracuse, New York in a lower middle class area, older houses.  I remember when my parents bought it when I was in high school.

As we did things in those days, they paid $10,000 for it.  I think they had saved $9,000 through their whole lifetime before they bought it, very small mortgage.

And they stayed there when I went wandering off to the seminary.  But a lot of their contemporaries died.  But they were there.  And the younger families came in.  That was in a sense good and bad news.  But they had sidewalks, and they had a front porch.

And they had a dog.  And they loved the neighbors' kids.   And so as these younger families moved in, they didn't have to worry about the kids coming home from school sick because Charlie and Elizabeth were there.  And they put the kids over their flowers, and they loved to hold the kids.  And they talk with the parents.

Geez, I came home one time.  I was a priest.  And here my parents are talking with some couple about sex.  Geez, they never talked to me about sex.  You know?  And it just was amazing.

But my father began to become frail, multi-infarc dementia, many TIA experiences, became less stable on his feet.  Of course, this is the same Charlie that would plow everybody's driveway and everybody's sidewalk with his ancient snowblower in Syracuse, which has more snow than any other big city in the whole world, actually.

But what was then devolved was a sense of solidarity and reciprocity because then as my father became more frail and would fall out of bed, it would be the same tykes, now 18, 19, and 20-year-old, whom my mother could call and they would come over and put him back in bed.

Okay.  Now, as my father becomes more frail, we have one bathroom upstairs, to see him crawling down the stairs or, worse, crawling up the stairs.  You know?  So then we got home care, home and community-based services.

That was great except when they didn't show up, you know.  And when you have a home care worker that doesn't show up for somebody who is totally dependent, that's something else, especially if that dependent person also has a frail wife.

So at some point I said autonomy be damned.  And I said, "You've got to move."  Assisted living was the next, which was very nice, lifesaver, very expensive but a lifesaver, if you will, because they had cafeteria services and they had meals they could get, cafeteria in the sense that they could hire just so much help as they needed.

It was good, but I remember being at an American Society for Aging meeting in San Francisco, and I got a call.  This is the long distance caregiving.  And the person says, "This is" so and so, "Your mother fell and broke her hip."

"No.  You mean my father."

"No.  Your mother," my mother helping my father go to the bathroom.  He fell on her.  So off I go, you know, to go through that process.

And there was that period of my life when I'm running the Third Age Center, being a world renowned professor and gerontologist.  And I'm sleeping on the couch with father in one room and my mother in the other and me wondering who is going to have to go to the bathroom first during the night and how I am going to manage it.  I learned a lot about being a certified nursing assistant.  It took the hard way.  I almost broke my back doing it, but I learned how to do it eventually.

Eventually my father became more and more frail.  And we talked about surrogate decision-making, here, there, in an institution, frankly, that I started.  He goes to a hospital, of which I am a trustee.  And he goes with a bowel blockage.  And the wonderful doctors there and I were looking.  We said, "Geez, we'd better admit him.  And, you know, I don't know what we can do."

Then as they're wheeling him out on a gurney, having gotten all of the information .. he's been in the hospital about ten times, but, of course, they ask the stuff over and over again .. they said, "Mr. Fahey, if your heart stops, would you like to be resuscitated?"  My father doesn't know whether it's January or June or what it is.  And he sort of mumbles, "Yes."

As they're wheeling him out, I, who am now in the Public Health Council for the State of New York, knowing full well all of the ramifications, say to the doctor, "If anybody touches him, I'm going to break their arm."  He doesn't read the New England Journal of Medicine.  Okay?

I could go through a whole series of experiences where I surrogate decision-maker for mother and father, I a member of the Institute of Medicine, I a trustee of all of these things, (a) psychologically how hard it is; two, what knowledge you need; and, three, how you have to negotiate the system at every step of the way, that in addition to having surrogates, we have to have ways in which those surrogates are able to be supported with knowledge, understanding, and how they can be advocates for the people they're engaged and involved in.

My father was playing golf in his mid '80s.  At least he was going out with his little cart.  And he and one of his buddies, we never knew whether they were playing golf or whether they were looking for golf balls because they loved to go around and look in every ditch and so on and so forth.

He finally had to go in a nursing home and finally died.  Mother was able to be sustained but now for the past three years has been in a long-term care facility.

I mention again the cost.  These are middle class people.  My father worked for one company all of his life.  The company went bankrupt.  He had a bond with the company.  That went down the drain.  His pension went down the drain.  I'm still paying to that company for her health insurance.  Of course, I pay for the whole damn thing.  You know, the company doesn't put a nickel into it.  They just are a conduit for the whole thing.

Now, all of that is to say we have to in some way redefine what we are talking about.  And I would like to use a phrase that was used this morning.  Frailty is really what we're talking about.  And it's progressive intermittent frailty that accompanies inevitably the third age, third age being a biologically based phenomenon that, frankly, doesn't exist in most living things except human beings because we're able to defy Mother Nature with all of our stuff that we intervene with.

Of course, that's the big issue ethically.  Science is not its own end but, rather, has to be morally justified in how you use the things of science, but that is another story for another time.

But here in this third age now, we are developing this capacity to continue to live but at enormous costs:  psychological; emotional, if you will; opportunity; and economic.  And the question is, how do we share the burdens?  Just society is one in which burdens and benefits are shared by equals equally, by unequals equally, in accord with capacity and need.  This is what you're about and we're all about is how are burdens shared and what is the burden that we're sharing.

Now, I say this because economically frailty costs substantially.  I mentioned our own middle class, our lower middle class.  My folks never earned a great deal.  But it was only because of the appreciated value of their house that they were able .. Social Security being underneath it all and Medicare paying for stuff, and then they paid a lot out of pocket.  I knew how to shield and transfer resources and all of that, but we didn't do it.  They wouldn't do it, and it was for them and hooray.

But here is the huge issue that we have coming along the way from an economic point of view.  We at Milbank with EBRI, the Employee Benefits Research Institute, that knows more about pensions and all of that stuff than any other entity in the country and is supported by both labor and business, we were able to go to Oregon, Missouri, and Massachusetts and to have access to the retirement programs, defined benefit and defined contribution, of every single employed person in those states.

Also, there is a derivative study now just going to be reported on if it hasn't been in the past week in Minnesota.  In this, we were able to project forward against Social Security, same, better, worse, with inflation, disaggregated by gender and by family structure, what is the probability of current employed persons to have X percentage of certainty in regard to having enough for decency.

Of course, guess who comes out with extraordinary risks?  Single women, whether single because of divorce, never married, or whatever it is.  But virtually everyone to have decency has to save more than they are saving, but, of course, they aren't.

The other side of that, we aggregated it all to see, if you will, the unfunded liability, just using it broadly, of states and the Medicaid systems.  I'll tell you.  Our people in the reform state groups are scared out of their wits because they see what is coming down the drain.

This is a huge issue for us as the nation of how do we generate sufficient resources over time to deal with this prolonged period of retirement in which assets are sold, are diminished for ordinary stuff, to say nothing of being able to sustain people who are in need of the need for others.

I want to make another point in this regard of frailty.  Already the default system, as Bob has mentioned, is family, friend, neighbors.  People cobble stuff together to have decency.  Frailty involves a disequilibrium between internal capacity and external demands.  It's disequilibrium between external demands and internal capacities.  External stuff can either be good or bad.  Internal stuff can be good or bad.

For example, the Americans With Disabilities Act, when we passed that, all of a sudden, disability was greatly reduced de facto, not just definitionally, because we change the way in which we would do stuff.  You know, every sidewalk in the country has a cutout.  It makes it easier for all of us to deal with those things.

Unfortunately, in the frailty issue, I mention, again, extracting from our home, they had to move largely because of having a bathroom on the floor and no practical way to put one on the first floor.

Frailty is generated by the death of a spouse.  Frailty is generated because of my father's frailty and my mother, therefore, became frail.  Frailty is generated because of a loss of income, if you will.

So there are all of these externalities that in one way if we look through the third age from a population point of view, there are predictable things.  But the way they play out is idiosyncratic.  That makes it very difficult to create entitlements because of the difficulty of defining that which would trigger a benefit, if you will.

So that's just kind of a thought.  What we're really talking about in terms of government is what is the role of government:  public good, common goods.  When it gets down to individual stuff, what is the role of government in that regard?  And that is if they are going to have benefits, for whom?

You know, we have two different tracks we go for in this country.  And it's a mix.  The one track is social insurance, in which we all have a risk; the other welfare benefits.  This is true in this area, in which ironically for health part of long-term care, we have Medicare and everybody is covered, for that which is really the essence of long-term care isn't medical.  It's basically sustaining people.  It's hugs, and it's getting people to the bathroom.  It's cleaning them up.  It's all of that stuff.

Again, a little incident.  I'll never forget my mother saying, "For heaven's sake, I never thought I'd have my priest son help me put on my bra."  But that's really what we're talking about.  It's that kind of stuff.  Who cleans up the shit?  You know, these are the kinds of stuff that we have to face and deal with over time.

So it's what is the burden that we're trying to assess and when do we want to intervene in that.  And when government comes, what form do we want to give it?  And do we want to give it in services?  Do you want to give it in money?  And who should bear the economic burden?

I'm going to conclude with this hopefully not too disjointed presentation to address something that you addressed.  If you ask Fahey what you should do, I think ultimately we need a social insurance program and it's based on disability and it's money.  And you give people based upon a level of disability income.  And they cobble together what they need.

It probably would de facto mean that there would be .. I'm saying "de facto," not technically .. coinsurance and deductibles as a result of this, probably wouldn't meet the total cost.  So, therefore, there is still the principle of subsidiarity, if you will.  People would still be able and challenged to get long-term insurance when you really talk to the long-term care insurance people.  They would see in many ways that their role would be complementary to a social insurance program, rather than being the basic element underneath it all.  But I think that's the kind of thing.

And it's somewhat being done in Germany.  Somewhat it's being done in Japan as well.  Again, disability, the degree of it, deciding what the benefit would be; and then, secondly, that depending on where you got it, it would be discounted.  But it could go to families.

We have an interesting experience going on now, as I think you reference in your work, called Cash and Counseling, which in some ways that's what it is.  It's welfare, but, in effect, what it is, it gives people money and lets them .. do they need a car?  Do they need a ramp?  Can they pay somebody not to go to work?  And it seems to be providing some pretty good stuff in Arkansas and Florida.  And there is some research being done in it on those kinds of things.

So, again, how do we establish things that have sustainability, adequacy, equity, reflect social solidarity, reciprocity, all these kinds of moral words that we use?  But we have to do it.

And I'll conclude with this.  In our Commission on Quality in long-term Care, in which we're struggling and sloveling along, we recognize that our funding is ephemeral in that who knows how long we'll have it and never are we going to be able to address all of the issues that need to be addressed.  There is a need for structures that will be over time that look at these things in a passionate dispassionate way if I can put those two things together.

As Bob can tell you and I certainly after all the scars of 40 years in the field, this is a field of advocates and of lack of civility of people.  The field of aging has so many oxes that get gored, so many people with economic and psychological states in it it's extraordinarily hard to have a conversation that makes sense.

Everybody thinks their piece of the action is the piece of the action.  If you ever want a validation of the point the excellent is the enemy of the good, it's all the people on the side who say, "Well, if you only do this, then this will be good."

So, anyway, there are a few thoughts that I hope that might be of value to think about.  And read the paper.  You might find that interesting, too.

CHAIRMAN KASS:  Thank you very much.

The floor is open for discussion; first, I guess, for specific questions to Father Fahey, but both papers are really open for general discussion.

FR. FAHEY:  By the way, I should say one thing.  It was interesting.  This was a public committee.  Newt Gingrich, of all people, said, "You know, this long-term care stuff, maybe we ought to be sure that everybody who is employed when they go be employed, that somehow that we mandate long-term care insurance," Newt Gingrich, no less, public.  He said, "Oh, yeah.  Not all poor people can do it.  We ought to subsidize the poor people, but maybe then the risk pool is so big that it would be relatively inexpensive to be able to deal with."

CHAIRMAN KASS:  Questions?  Comments?  Robby had his hand.

PROF. GEORGE:  Yes.  Could I go back to the question that I raised with Mr. Friedland earlier ..

CHAIRMAN KASS:  Sure.

PROF. GEORGE:  .. or do people have questions for Father Fahey?

(No response.)

PROF. GEORGE:  No one.  Mr. Friedland, if I could follow up on the economic questions I was asking.  Those companies who have done well out of this, have they done well while others have failed because of a more efficient way of operating the long-term care insurance business or were they the beneficiaries of peculiar circumstances that enabled them to succeed and I gather succeed handsomely while others have failed?

DR. FRIEDLAND: I don't really know if I know the answer to your question.  There are certain toe holds that make a difference.  For example, if you have an association plan and you're with AARP, that's a big marketing device.  If you get the contract itself to all employees of the federal government, it's a huge employer.  Those efforts to get that, book a business as an access to it as a sole right makes a huge difference.

I suspect that there are differences in the distributional mechanisms, both in terms of the arrangements they have with agents, whether they are their own agents or whether they are independent agents.  I suspect that, to some degree, that has a bearing.  If you have independent agents who are not pushing long-term care insurance because it's harder to sell than life insurance, that can have a bearing.

I don't have a good answer as to what makes a TIAA-CREF decide this is not a good market to be in.  I don't want to get in this.  I want to get out of this market.

You know, that's a reputable company.  They're in it for the members.  And they decided that they would offer it to members.  And whether it was simply because members didn't buy or whether the costs were too high to sell it, I don't know the answer.

FR. FAHEY:  May I offer a thought or two also?

CHAIRMAN KASS:  Certainly.

FR. FAHEY:  The state governments are very much enamored, some state governments, of the notion of long-term care insurance as being one of the ways of relieving the burden of Medicaid.  So they're looking into it rather extensively.

From the company point of view .. and here I'll have to be careful because I have been on the road for Met Life, which is one of the ones that are successful, although they don't like to have me talk because I often say long-term care insurance doesn't make sense except for a rather narrow band of people economically.  It just doesn't make sense.  They don't like to hear me say that.

But from the insurer's point of view, in fact, we have 50 different states with 50 different sets of regulations in terms of the marketing.  It makes it very difficult for them.

So the degree, as Bob said, if you can book the business one place in one set of circumstances, then it becomes economically viable to be able to do it.

Now, on the other hand, the National Association of State Insurers, whatever they call it, State Insurance Commissioners, they have all kinds of questions about all of the long-term care insurance in terms of its long-term viability, marketing practices in a whole variety of areas.

PROF. GEORGE:  Do either of you have thoughts about what could be done by way of public policy to create economic incentives and let competition do its part to make long-term care insurance more readily available and affordable or, no matter what we do, will you take the position, Monsignor, that it will still only make sense as private long-term insurance to a relatively small segment of the public who will need care?

FR. FAHEY:  No.  It isn't so much who need care but who can afford it, for whom it makes sense.  Once you're above a certain economic level, you might as well insure yourself.

Once you look at what long-term care means, who uses it, how long it is, what's the risk, the risk is relatively short for the most expensive.  Now, I probably talked about with my parents one of the more expensive things, where you have a husband and wife who live to be 97 over a long period of time.  And so they spend all their money.

But still it's only now with my mother.  I don't know whether she's going to live another day or not, but she goes on Medicaid.  So they spent all the money.  It would have made no sense except to me if I wanted to pay their premium if that would have made economic sense.  But it doesn't make any economic sense for them to have gotten it and for most people above a certain.

Below a certain economic level, it does make ..

PROF. GEORGE:  You can't afford it.  I assume you can't afford it below a certain ..

FR. FAHEY:  They can't afford it.

PROF. GEORGE:  Yes, right.

FR. FAHEY:  Exactly.  So it's a relatively modest place.

The second thing is how you sell it.  It is very uneconomic for an insurer to sell this stuff unless .. you see, most companies won't sell it as a group policy.  They may have it as part of their cafeteria plan and just be a pass.through, but they're not going to contribute to it, nor would the employees save for the federal government constitute a group of shared risk.  That risk goes into the total risk.  So it doesn't make it much cheaper.  So they don't like to even sell it that way.

They are just a few ideas anyway.

DR. FRIEDLAND: As pointed out, the place to make this happen would be in the employer market, the employment.based market.  You know, we don't really have large penetration rates of health insurance unless it's employer.provided.  I mean, there's just not that many people buying individual policies.  The individual market has its own set of issues.

So the employer.based market would be the place.  At this point or up until this point, there are very few employers that have been willing to pay for it.  And so what are they doing?  They're paying for the administrative structure.  They're shopping around on the part of employees.  They're negotiating it.  They're opening up the administrative structure so that it makes it easy to sign up and pass your paycheck to that insurance company.

Of course, you're going to have to stay with that insurance company when you change jobs because you have bought it for a lifetime.  And so if the next employer offers it, you're going to turn them down.

Even in the best of cases, where the employer really believes in this and is really behind it and puts a lot of effort and makes it the forefront of the employee benefits fair and all of that stuff, the best they have ever gotten is a sign.up rate of 15 percent.  It's usually around two or five percent.

PROF. GEORGE:  Why?  Why?

DR. FRIEDLAND: I think, (a) some people do the math and say, "It doesn't make sense"; (b) it's too expensive for some people; (c) there may be some elements of denial involved in that "I'll never need that because I will never be dependent on others."  So it's a combination of factors.

FR. FAHEY:  Well, of course, Medicare covers it.

DR. FRIEDLAND: And, of course, Medicare covers it and/or you think you might be able to .. some people seem to think that people know about all the Medicaid rules and, therefore, could gain Medicaid.  But there are a lot of reasons.  We don't know the full reason.

It's a hard thing to buy.  I mean, just think about it as a product.  It's a hard product to buy.  If you buy and they improve the product ..

PROF. GEORGE:  You're stuck.

DR. FRIEDLAND: .. you're stuck.

Now, I would feel differently about this discussion if long-term care insurance covered long-term care.  If it weren't just prefunding a fixed dollar amount that you chose, then I think it would be a very different kind of discussion.

It wouldn't necessarily be cheaper.  Even if the pool were bigger, it may not be cheaper because long-term care can be very expensive but if you really insured the risk, which is not something the insurance companies have been willing to do.

In part, I understand why.  In the beginning, they didn't know what the risk really was.  So they said, "We're not going to take a risk."  The risk will be that .. I mean, there's very little risk.  The risk is that they don't earn the rate of return in the marketplace with the pool of money that they have that they expected.  That is the risk that they take.  And they are professional money managers.  You know, they manage life insurance.

Now, getting back to your other part of the question about who does better, you know, some of it has to do with relationships with agents.  In farm states, people have very good relationships with their insurance agents.  In less rural states, they don't have an ongoing relationship with their insurance agents.

PROF. GEORGE:  Is that reflected in the sales?

DR. FRIEDLAND: Yes, very much so.  So in farm states, you find that the larger proportion of the population has it because it requires essentially an individual trusting that agent to help them, guide them in both not just that they need it but which policy to get.

It's so complicated because it is the ultimate consumer choice.  You get to choose every aspect.  Is it a 30.day waiting period or 90.day waiting period or zero.day waiting period?  Is it one.year, five years, lifetime?  Is there an inflation protection adjustment or not?  Is it not for insurer benefit or not?  You get to decide.  Is it $100 a day, $200 a day, $500?  You get to decide, ultimate consumer choice.

So which one do you choose?  When you buy auto insurance, which, of course, you're required to in most states, I believe in all states, you base it on the value of the car and whether or not you want the collision.  When you buy house insurance, you base it on the relative value of the land and the house.

When you buy life insurance, you base it on current income standards.  And when your income changes or your dependents change, you change your life insurance.

But you can't do that with long-term care insurance.  You buy it once.  So I don't know if all the decisions not to buy are rational or they're just so confused they don't make the decision, but I don't know.  I've been trying to understand that myself, but I don't know the answer.

It's a very hard decision to make.  It's a very expensive decision.  I'm not talking about the premium.  You're paying the premium for the rest of your life, assuming it doesn't even go up.  Of course, they have reserved the right in the small print to raise the premium if they guess wrong on one of those factors.

And will you have the income when you're not working to pay for the premium?  Now, you're supposed to with the agents.  I mean, the National Association of Insurance Commissioners doesn't dictate state law, but a lot of state legislatures have adopted the kind of guidelines from the National Association of Insurance Commissioners.  So in most states, you have to talk to the client or the customer about the feasibility of paying for the insurance premium when you're not working anymore.

So they're supposed to go through a calculation of how much they're going to be able to pay, but what if the premium goes up and it's just a little more than you expected because you didn't expect these other things to go up?

Some companies have done a great job in terms of marketing and positioning and the relationship they have with their agents.  And maybe their distribution mechanism is more efficient and that's why they stay in it.

I look at TIAA.CREF and say, "I think they got into it for the right reasons, and I think they got out of it for the right reasons."

CHAIRMAN KASS:  Rebecca Dresser?

PROF. DRESSER:  I was wondering if each of you could give us 2 or 3 of your top priorities in terms of policy interventions or maybe it's such a mess that you would have to have 20 priorities?

But you've given us a huge amount of information.  And it's really fascinating, but for people who aren't experts in this field, what would you say is most important?

DR. FRIEDLAND: You know, there is a practical answer, and then there is the pie in the sky answer.  I think the practical answer is to help change the language around the tax credit for caregivers.  You know, that is something that .. actually, I'm going to take a big step back.

It has surprised me that the insurance industry has not gotten the number one thing they want, which is above-the-line deduction.  What I mean by "above-the-line" is it's not itemized.  So it's above line 33 or so on your 1040 form for the insurance premium.

I'm surprised in this Congress and this administration that the insurance industry has had a tough time getting that passed.  I think part of it is because it's not a high priority, even in a business-oriented Congress and White House.

It is very likely that will move.  And it is usually tied to the caregiver tax credit.  And so maybe changing the language about why we value caregivers might be a practical step that is doable in terms of the discussion about that tax credit.

Will it change ..

CHAIRMAN KASS:  I am sorry.  I'm not absolutely clear.  I'm not absolutely sure I understand.

DR. FRIEDLAND: The credit?

CHAIRMAN KASS:  No, no.  What kind of language you were recommending.  Change the language from what to what?

DR. FRIEDLAND: I think it is being sold as a way of helping caregivers.  I think it should recognize that it will not help caregivers, that it is an acknowledgement.  Regardless whether the amount is any different, we're talking nuance here.

It is an acknowledgement that caregivers deserve to be treated differently if their income tax is the same as someone else who is not a caregiver and we as a society recognize the value of caregivers and, therefore, acknowledge it in the Tax Code and, therefore, provide a tax break for being a caregiver.

That would be an easy first step.  And it's a public discourse of why caregivers matter.  Then at least you could, at least through this reporting mechanism, begin a dialogue about why caregivers matter and why long-term care is in a mess.  And, you know, caregivers matter because long-term care is a mess.

And even if we did a better system of long-term care financing, caregivers would still be a part of the picture.  But we need a desperate way.  Desperately the next step would be more the pie in the sky.  I think the desperate issue is the nexus between paid caregiving and family and how to figure that out in terms of meeting the needs of families.

We don't do a very good job at that.  Cash and Counseling is an example where we can do a better job because we're not relying on an agency where you're depending on someone bringing someone in who does or doesn't show up.

But no one is really talking about expanding coverage in a big way.  And it doesn't seem like it's politically viable.  But maybe a discussion about why caregiving is so critical to the system and why the system is so hard on caregivers could lead to a discussion of why financing long-term care needs to be revisited and needs to be improved.

DR. FOSTER:  I wish that you would make it clear to me why a $3,000 tax credit would in any sense really change the system in terms of the discrepancy of the money that's needing.  Do you think that the caregivers would then enhance their care, spend four hours taking care of mom, instead of two hours, because they feel a sense?  I mean, I'm just not following why.

I sense your love for caregivers, which I think is very, very justified.  I mean, I think a lot of them are heroines.  I mean, that's what they are.  I guess most of them are women we have heard, are heroines to do this.

But I think it seems to me that that would be a diversion from the real problem.  That is, the last point you made is how to subsidize the care that cannot be given at home by having somebody come in in real dollars, as opposed to a tax credit.

I just don't understand why you think that is so important except to be sort of a slogan to say, "Well, we love caregivers."

DR. FRIEDLAND: Exactly.  I don't think it's important at all.  I'm not in favor of it.  But it's moving for political reasons to placate certain parties.

DR. FOSTER:  But then shouldn't our job be to say that's not a very wise thing to do and we ought to go to the real issue?  What I'm afraid of is that it might be taken away from transcripts here or something.

In fact, I got the impression that you were for this.  You just clarified that by saying, "Well, I'm for it in the sense that it's moving ahead.  It's moving ahead.  Maybe we ought to try to get it better."

But if what you just last said, you're not really for this, and I just didn't want it to come out of here that the number one priority would be that that's what we would work on, I would say that your last statement would say we might notice that that is something that is moving.  And then that is not quite the way that we ought to go.

DR. FRIEDLAND: It is moving because of what I find even more difficult to accept, which is the public money to provide subsidies for private insurance.  That's the reason it is moving.

It is being put on the table as a way of placating those.  And I'm not one of those because I'm not a player that matters.  But for groups that care about providing a toe hold for the tax credit, this becomes a starting point.

The reason it is being pushed on the table is because of what I find even more difficult to swallow, which is giving people who would have bought the insurance anyway the tax deduction or a subsidy for their insurance.

DR. FOSTER:  We have been talking about long-term care here and Medicare.  And there's a whole problem of Medicare, which is not nearly as important the people who have spoken to us say as long-term care.  But if you were really just looking at the problem as a social engineer, wouldn't you just say we ought to combine these problems; that is, the failure of health care delivery in the medical sense and the long-term care to say we need some sort of a system that assures in this very wonderful and caring company that people who can pay ought to pay and people who .. I mean, you would expect somebody that was .. you know, somebody like myself should not be funded for this because I could probably take care of it myself, you know, long-term care, even if I live to be 97 or whatever, whatever it is.

I mean, it seems to me that even dividing up this issue is not .. maybe it's just what you have to do, but it would seem to me if you're looking at it, that it's bizarre if you're trying to get the best possible solution for the country to say, "Well, we have got a problem with people who can't get Medicaid or Medicare.  And we've got a problem with long-term care" when I would say how can we reorganize society in such a way that we can go through first age, second age, third age with assistance to those who need it drastically and it probably in my sense, even though the quantity of dollars may be higher, I'll bet it would turn out to be cheaper than trying to do it broken up.

DR. FRIEDLAND: I couldn't agree with you more.  I have always been perplexed by the notion that if I have a heart attack, it's fully covered and I don't have to worry about asset transfers or anything but if I need the social support services following that stroke or whatever that is, I'm in trouble.  I mean, I have never understood that.  So I agree with you completely.

But the truth of the matter of the fact is that that is not the way the public discussions are going.  All of a sudden, the Congress realized there was a risk that wasn't covered in Medicare called prescription drugs.  It wasn't a new thing, but it was discovered.  And, therefore, there was a movement because the timing was right politically to expand Medicare into prescription drugs.

That time has not come for the other risk, which was long-term care.

CHAIRMAN KASS:  Sorry.  Father Fahey still wants to respond to Rebecca's question and anything that has happened since or before.

FR. FAHEY:  I think that this value of a commission like your own is to help forward the public dialogue and as I in my halting way was trying to even define what it is, the hurt, we're trying to deal with.

We got to where we are, Bob averted to it, that the Medicare benefit that is used partially for long-term care was merely to reduce hospital days, kept people out.

When Medicaid was passed, they didn't have the vaguest idea what it was going to do, you know, Curt Mills.  Somebody said Mills wanted to get his name off, Curt Mills.  But it was very uncertain.  And then, of course, the states ticked it up and ran with it.  But it became overly medicalized right off the bat.  So we have defined long-term care, by and large, as a medical problem.

Nursing homes.  What do they look like?  You might as well have had one architect make every nursing home in the whole United States.  Forty beds.  Stack them up or make them go out long distances and have nursing stations in the middle and so on and make sure they have all of the characteristics and, again, make sure they're safe.  That's what the regulations say.  And through the Medicaid system, make sure people are rehabilitated.  It doesn't say, "make them comfortable" or "make sure they get hugs" and things of that sort.

So I think it will take a while, but I think redefining what the issue really is and how we try to address it is a .. and, as I say, I think it is a question of progressive frailty over time that happens differently to different people that ultimately gets to a point where it is so costly that a person cannot reasonably be expected to deal with it.  And we ought to have a huge risk pool to deal with that relatively small group of people who will be in that kind of need over time.

So it's redefining, if you will, the problem and approaches to it and not so much .. see, right now it's all provider-driven.  Who are the insurers?  Who run the nursing homes?  Who are the providers of care?  And it's their interests that tend to be paramount in the political discussion, rather than the users of all of these things.

And it takes people of the knowledge, skill, commitment, and understanding of yourselves to put this into the public domain for a different kind of discussion.

CHAIRMAN KASS:  Let me fumble my way to a question.  Notwithstanding the fact that family structures are not what they used to be or neighborhoods of the sort that your parents lived in, at least for lots of people, especially in big cities, not what they used to be, it's still the case that not only our families, where the families exist, the major providers, but that seems to be the ethos.

Jim Wilson, oh, it's four or five meetings ago, regaled us with the social science study in which Americans were asked when the elderly are incapable of looking after themselves, who do you think is responsible for their care.  In the United States, something like 85 percent said it's the family's responsibility.  That same question in Sweden produced an answer of 11 percent.

Now, that has something to do with differences of culture but also differences of expectation in terms of government provision of health care and other social welfare programs.

I take it neither of you are inclined to say that .. well, are you inclined to say that this particular kind of notion of Americans for personal responsibility and familial piety and responsibility and add to that, at least in some quarters, a kind of suspicion that the government ought not to be doing things that turn us into more like Sweden with respect to this sense of at least local solidarity.

But it seems to me you are saying that we should, as much as possible, support those people inclined to give care with respite care and funds and safety nets and things of that sort.  You're not in a way trying to undermine that.  You're trying to strengthen it.  Okay?

At the same time, though, you're trying to produce a sense of communal solidarity that isn't somehow family-based and individually driven but in which people are supposed to somehow understand that there are lots of people without families, that there are lots of people who can't afford care or can't get this insurance, they're not all the beneficiaries of faith.based communities, which will reach out and send in caregivers one day a week or do something like that.

So the question I suppose is, how does one in this particular community mobilize support to think of these things not family by family, me in mind for ourselves, but to adopt this kind of view of at least a communal obligation for .. let's speak modestly .. those who simply cannot do this for themselves and don't have the kind of resources to do what is minimally necessary or minimally decent?

We're not very good at this in terms of communal discourse.  It's not been our way, though.  You know, you have a hurricane.  And the generosity of the American people is astonishing.  And, yet, for the things that are not presented as catastrophes and emergencies, that are simply the enduring problems of the same magnitude, it's very hard, especially if you're not trying to turn this over to the impersonal providers but wanting to somehow keep the personal and familial focus on this.

How does one go about generating the kind of interest and sense of communal responsibility to do what is modestly decent, not pie in the sky?  And where would you see the ability to mobilize the interests and the political will to do this?

FR. FAHEY:  You know, I am inclined to think that it already happens substantially in areas which already have a sense of community in which there is propinquity of interest and so on.  You know, being a parish priest, as I am. And I don't mean just faith-based, but in Liverpool, New York, where I keep a robe and a parish, it's small enough and it's big enough.  It's an amazing amount of solidarity that is there.

And, frankly, you mentioned big cities.  In some ways, big cities aren't so bad either because, at least from people, they've got a doorman downstairs and they've got all kinds of stuff within relatively easy.

Suburbs are the disaster, where there is no sense of solidarity that started up.  There are no sidewalks.  There aren't communal places for people to come together.  They go to school one place, church to another.  They go to the mall over here and all of that.

So in some ways, it's the great American suburb, I think, that's the problem and the gated communities, where, instead of having the .. again, the sidewalk and the front porch, you've got the barbecue pit in the back and you've got the garage in the front.  And nobody ever sees one another.

This is idiosyncratic is my own experience in many different places as a priest.  Where you have relatively small areas and where people do stuff together, it's an amazing amount of solidarity and help for the older person or the frail person or the person with the disabled child.  An awful lot of good stuff goes on.  There is something evil about size.

CHAIRMAN KASS:  Then is your counsel that these really are matters for state and especially local government and not even local government but some local .. how does one mobilize from the point of view of the national government, the kinds of changes of incentives or the development of the kind of either social insurance or welfare benefits that would provide the things that are, in fact, needed in this area?

I think this is not unrelated to .. I'm trying in a more general way to ask Rebecca's question, really sort of thinking more nationally.

FR. FAHEY:  Is it a governmental issue?  Is it a governmental issue?  You know, you separate out the functions of instrumental health effective care and finances.

Obviously I think in terms of equity and adequacy that probably the federal government with its ability to tax and do it across states and so on is a place in which some sort of adequacy and equity can be developed as far as finances are concerned, but in terms of basic human interactions, I don't think that is the role of government at all.

CHAIRMAN KASS:  On the other hand, if you decide that Medicare pays for this and not for that, you wind up having people brought into .. we heard about this earlier.  One changes the behavior of people in terms of what it is that the community has agreed that it will pay for in a system which was designed to deal primarily with acute care, not terribly well.suited to the .. I mean, we are aware of the problem.

The question is, how does one sort of mobilize the interests and the political strength to provide these kinds of whatever it is that the federal government can do unless one thinks it's really not a federal government problem?

FR. FAHEY:  I think the people are really going to push the state government towards the federal government because they're getting frightened to death.

The enormous liability of the states under these today, to say nothing of tomorrow, I think it will see some realigning of the notion, strictly the financial side of it, of states pushing very hard for the federal government.

There have always been cross-subsidies.  This is ironic.  Medicare has subsidized long-term care by paying more for those people that are in long-term care.  State government underpays for long-term care.

Now, Medicare is being .. they're taking away the subsidy in the long-term care system.  And the states are taking it away.  And, of course, all of this stuff about burdens, it's now being shoved downward to families, to individuals, and so on, in a whole variety of ways.  Now, how we switch that around, I don't know.

DR. FRIEDLAND: I think in my mind, there is little question that when it comes to the financing part, it has to be through the funnel of the federal enterprise.

There's no question that the Medicaid programs now are on the ground.  They know who the players are.  So they have the most direct impact on the infrastructure.

But the infrastructure in home and community-based care is not very well.developed, in part, because the way you get money as a provider is to cater to Medicare, post.acute care, or post.acute care in Medicaid.

So what the world could look like is not very clear because there's been a very limited market for interventions that fuel .. my way of thinking about it is for those with families, we're not going to lose the family.  The issue is, how can you sustain them to do it longer and to do it right so that they don't give up or they don't lash out, they don't inflict pain in their anxieties or in their guilt or in their frustrations?

So I think in general, the family has to have control, but how do we do that?  We don't do this in federalism.  If we give money to the states from the federal government, we want a lot of control over that from the federal government.  If we give it from the states to the family, we want a lot of control in it.

So I don't know how we get there.  Cash and Counseling is an example of where an experiment, a demonstration, for example, where we have given the authority to spend the public money into the hands of the family.

Now, perhaps the evaluations of that will be so successful that families can be trusted and to use that money because it's really about using money to integrate to the arrangements that you need in your own family circumstances.

We don't have examples where that is.  I concur.  I don't know that there is an easy answer.  But I think given that we have states with lots of effort but little resources and we have got states with lots of resources and no effort, we need in terms of funneling the money the federal government.

How the federal government can do it without putting their hands on the rules on the state government completely and how the state government can do it without putting all of the rules on the consumer is an experiment in motion, in action now with Medicaid.

But there are very few examples of what where we let consumer or family .. most of the focus, I think this is a big difference.  Most of the focus has been on the person who needs the care and not the caregiver.  So the beneficiary is never the  caregiver, but if we can change the language so that the beneficiary includes the caregiver, then that helps.

FR. FAHEY:  Let me make a comment, if I may.  Also, must of the help is through entitlements to individuals who are in need.  In some ways, what we are talking about are communities in need.

And while there have been some funds, community development funds, or .. really, the Older Americans Act was meant to be this, but it has never done that.

I know that several of the places that I am engaged in, upper Manhattan, which is a Dominican sea, Dominican order, the country, that much of what we're trying to do up in that area is to mobilize that community as a community, sending a trustee down in the village.  Again, there is an amazing solidarity within the village of all kinds of different people, all kinds of different backgrounds.

But what we're trying to do is get the bartenders and the firemen and the postmen and the neighborhood stores and a whole variety.  And we're calling it the age.prepared community.

With Governor Kempthorne, we did some work out there in terms of rural areas, which, again, using the word "cobble," that need to cobble stuff together that doesn't fit nice entitlements but, rather, where somebody exercises leadership to facilitate people coming together and do whatever needs to be done with whatever resources.

Again, it's not comfortable to give money out there with a lot of strings attached to make that kind of thing happen.

CHAIRMAN KASS:  Thank you very much.  We are at the end of this session.  Thanks to both of you for an interesting and very, very thoughtful discussion.

The Council members, all of us, who missed dessert, dessert is upstairs in the Hospitality Room for anybody who would like.

Let's reconvene in 15 minutes, at 10 after 4:00.  We'll have an hour to have our last session.

(Whereupon, the foregoing matter went off the record at 3:55 p.m. and went back on the record at 4:24 p.m.)

SESSION 4: ETHICAL CAREGIVING IN OUR AGING SOCIETY IV: CONCLUSIONS AND FUTURE IMPLICATIONS

CHAIRMAN KASS:  This last session is devoted to our own discussion amongst ourselves of the conclusions and further implications of the report. A difficult task, to get a way to do so, without referring to the document itself, which you have all read from the comments that have been made apart from some particular difficulties with certain passages.

I think I have sensed that the sort of provisional conclusions that have been developed have met with general approval, but I don't think one should simply rely on private communications, so we should have a session where we talk this through.

I don't think I need to rehearse very much about the document itself and the major findings.  If we were starting on time, I would do that, but in the interest of finding out where people in the group are, I think we should throw the floor open for comments on where we come out.

I think everybody understands that this is but a small portion of the larger subject that we have been talking about.  Our visitors today have made that perfectly plain to us.  As much as they approve our taking up this subject and even see the value in this portion of the subject that we have tackled, it's perfectly clear that there is a need for much more work in this area and well.coordinated at a higher visibility, both in terms of collecting reliable data, commissioning empirical research and especially trying to think through really carefully with the kind of expertise that this Council does not now possess, including expertise in economics and insurance and in institutional design and the like, what kinds of feasible and possibly effective policy reforms might be available that could increase the capacity of families to care and to provide a kind of safety net for those who don't have families to care for them at all.

And one of the things, as you know, that we will be encouraging and speaking explicitly about, without at this point discussing that particular part of our conclusion, is to acknowledge the limited character of what we have done and to call for further work of this sort, much to be hoped for with participation of an ethical and humanistic and not merely an economic perspective but, nonetheless, to do things that we have been able to call attention to, but I don't think are ourselves in a proper position to take up.

With that, by way of introduction, I would like to open the floor for comments and see where we are.  Mary Ann?

PROF. GLENDON:  I think this report .. and I think what I am going to say is true of all of the reports that this Council has produced .. I think it has vividly shown us the truth of de Tocqueville's warning that something that would be very difficult for a democratic republic would be to plan for the future.

And he said that it would be the task of moralists .. that was his word .. and statespersons, to help democratic republics with this problem.  And if we could, broadly speaking, describe ourselves as moralists, I think in this report and in the others that we have produced, we have gone a long way toward living up to that exhortation.

But, of course, the other group that he invoked was statespersons.  We're not statespersons except perhaps Leon, the chairman, is, but I think we have done a great deal in addressing statespersons.  And we hope that we have been helpful to them.

Planning for the future, I am so grateful to all of the people who spoke to us today for emphasizing that it is not some remote long-term future that we're talking about, nor are we talking about some contingent future problem, something that like a storm might seem to be headed in our direction but might veer away harmlessly at the last moment.

It is absolutely certain .. and our speakers today have underlined this .. that we are already, every American family is already, touched by the problem.  And we have only seen the beginning of it.

So I think we have done an important service.  We have done what we as a Council were constituted to do by calling attention to the problem, by illuminating the human and ethical dimensions of a problem that risks being treated simply as an economic problem or a problem to be hashed out with the clash of competing interest groups.

So if we have done something to alert statespersons and persons who will participate in the public discussion to the human and ethical dimensions, we will have done a great deal.

What remains to be done, I don't want to repeat what Leon said but just to underline it, there is a great deal of empirical work that needs to be done.  And there is a great deal of policy thinking that needs to be done.

I would only add because I am involved in another body that has taken up this range of questions, I would only add the hope that the demographic situation that we're dealing with, that we would remember that the demographic situation that we're dealing with involves not only the greater longevity and the scarcity of caretakers, what we have talked about today, but also the declining birth rate, which means that there is another group that, like the elderly, risks being marginalized and forgotten in our society.  And that is children, young people, and child.raising families.

So while underlining where there is a great deal of work yet to be done, I think that we can congratulate ourselves on having produced a document that I think — all credit to the people who did the writing and the endless rounds of editing — that is a real contribution to one of the most difficult social problems that this country will face.

CHAIRMAN KASS:  Peter?

PROF. LAWLER:  With all due respect, I'm going to correct Mary Ann on de Tocqueville in one respect.  Here is what de Tocqueville thought would happen.  We would become apathetic, docile, subhuman herd animals.  We would lose all conception of our individual futures and turn everything over to a schoolmarm state or something like that.

Well, that hasn't happened.  Americans are more obsessed with their individual futures than ever before.  The safety nets are falling apart, including the safety net of government, the safety net of pensions and so forth.

So what we're not so good at is planning for our futures insofar as we can't take care of our needs as individuals.  So the report uses all kinds of terrible countercultural language, like solidarity and common good.

As Frank pointed out this morning, this language is less fashionable in America than ever before.  It's not so much we should blame conservatives, but we should blame the general libertarian drift.  There are conservatives who are not so libertarian and liberals who are libertarian.

So this is what I worry about when reading this report.  This won't resonate in America the way it should because here is one word that doesn't show up in this report hardly at all, "rights."  So Americans are being challenged to think in a way that Americans don't ordinarily think.  I hope it works.

I was mighty depressed all day because, first of all, every time I hear about Alzheimer's, I think I have it but also because of the problems brought up this afternoon.

I didn't hear any solution that was adequate to any of them.  All the solutions, I'm not going to go into all of them now except there are two kinds of public policies the report points to.  Number one would be that decent health care for all Americans somehow, especially long-term health care for the frail, demented, people with dementia and so forth, but the other kind of program is programs to help out families do what families are inclined to do.  So I hope this is in the transcript.

My wife runs a program which is basically day care for old people with Alzheimer's, early and mid-stage Alzheimer's.  It's run partly off of Medicaid.  And Medicaid is not nearly enough.  And under this administration, she has been cut big time.

It seems to me that lurking in this report is almost an American/Catholic principle of solidarity.  Insofar as we can, we should use the government to encourage Americans to do what the unsaid Americans are inclined to do:  have families take care of these problems.

But that is going to cost some lot bigger bucks than we have spent on that so far.  So in terms of the common good, decent care for everyone, in terms of the common good, we need programs to help families do what families are inclined to do.

CHAIRMAN KASS:  Robby?

PROF. GEORGE:  Well, I am much more hopeful than brother Peter Lawler about our report.

CHAIRMAN KASS:  You are or are not?

PROF. GEORGE:  Are.

CHAIRMAN KASS:  Are.

PROF. GEORGE:  Much more hopeful about how our report will be received by the segment of the public that does pay attention to these things.  And that is not an insignificant segment of our public I am pleased to say.

I don't think that Americans are so obsessed with rights and laws that they have lost interest in right and wrong.  And this report is rooted in principles that I think are among the best that we as Americans have historically affirmed and principles that we have held up high, held aloft for the people of the world to consider; above all, the principle of the inherent fundamental worth and dignity of all human beings and, indeed, the equal worth and dignity of all human beings.

This report begins, continues with a ringing affirmation of that and on that basis is able to grapple with serious issues about death and dying in the modern context, facing up to challenges presented by modern technology, including biotechnology, and is able to deal seriously with real problems of unreasonable over-treatment or relentless or burdensome treatment and I think, therefore, will be taken seriously.

I think it is also remarkable, frankly.  And here let me begin by confessing that I was wrong at the beginning when we were contemplating doing a report like this and I warned that we would simply fall into squabbling over fundamental ethical questions and would not be able to produce a useful report.

Reading this report, seeing how we have been able to join in a set of conclusions and recommendations that we can all affirm or, if not all, there may be some dissent but substantial, where we have substantial unity, I think that we have accomplished what I said we couldn't accomplish.

And given the pluralism on the Council, the diversity of opinions on the Council, which became very clear in our first two years, I think that the public who is interested, the segment of the public, who is interested in these things will find that that is quite remarkable and reassuring.

So here we are, a very diverse group.  The evidence is clear on that, a very diverse group of people, people with a lot of different ideas.  Affirming a report built on a set of common principles on which we have been able to move to a set of common conclusions and recommendations and not because the conclusions and recommendations are trivial, minor things but because we have been able, together with the help of our staff .. and I particularly congratulate Eric on this .. we have been able to think through the problems very carefully.

Now, it has been pointed out several times by Leon and others that what we have produced here is something that is limited.  We only address a small portion of the problems.  Well, yes, but, look, the problems that we do address, while a small portion, are serious problems.  They're not easy to think through.  And I think the report thinks them through very well.  So I think this is an accomplishment.

CHAIRMAN KASS:  Gil?

PROF. MEILAENDER: What interests me is sort of what the report grew into because it grew into something that I don't think we originally had in mind.  We started off with the notion that, partly just for reasons of time, we would produce a rather modest, small, focused report.  And we began that way.  But it has turned into something that is considerably larger and goes beyond that.

So that the initial focus, really, on kind of procedural ways, like advance directives, of dealing with decisions ballooned into a much larger discussion of these things.  Maybe that's instructive.  Maybe it has to.  Maybe the large conceptual issues, in fact, must emerge.

So I think we have accomplished several things.  I think in terms of the larger issues that it ballooned into, we have reaffirmed or rearticulated some principles that have been around for a long time, some of which Robby just noted.

I myself think that if you once say that assisted suicide or euthanasia are not the way to fix these serious problems, you will, in fact, be driven to something like the principles that we reaffirm in the last chapters of the report.

And I think that the stuff we say about a more modern focus, with which we started, is also important and well-said.  We call attention to some degree to the scope of the problem, maybe not as if nobody else ever saw it or thought of it or could do it, but we call attention to that.

And we suggest that purely procedural ways of making these decisions, though they may be useful in some respects on some occasions, cannot really solve the kind of caregiving dilemmas that we face.

And then once you have said that and once you have ruled out for yourself something like assisted suicide or euthanasia, it drives you on, maybe inevitably, to the sort of larger .. to the reaffirmation of the larger kinds of principles that we came to.

So it's, in my mind at least, a sort of circuitous route by which we have arrived at the place we have arrived, but it may make sense and may be understandable and I would hope useful.

CHAIRMAN KASS:  Rebecca?

PROF. DRESSER:  There are two dimensions of this report that I find especially positive.  One is that we have named this as a bioethics problem.

I am one of the few people who sort of has a bread and butter of bioethics, in my teaching and my work.  And I get frustrated with my field being so focused on cutting-edge research, future possibilities, you know, designer babies, all of those things.

And I don't think we pay enough attention to the everyday medical ethics problems that people are struggling with right now.  I think that the other problems are in some way more fun.  But I think it is irresponsible to pay disproportionate attention.  I think we do pay disproportionate attention to them.  And I think it is irresponsible.

So I am very pleased that our Council has put the stamp on this as an ethical problem and a bioethical problem.  And the second thing I am pleased about is that we discuss the treatment issues that are distinct for this population.  I think that there has been a lot of work in end.of.life care and decisions about treatment for incapacitated patients, but I don't think it is focused enough on this population. And the real subtleties, the individual situations of the patients, the challenges of caring for someone who is older, gets dementia, then gets all of the other problems that come along with aging, can live for quite a few years...

Questions will come up and will primarily affect someone who remains conscious and someone who really experiences these interventions in a personal way.  So it's not as if it's someone like Nancy Cruzan or Terry Schiavo.  These are conscious patients.  And we have to really keep that in mind.

So I think that it is a very complicated treatment decision.making situation.  And I think this report does a wonderful job of delving more into the details than any other public document.  And I am very pleased by that.

CHAIRMAN KASS:  Paul?

DR. McHUGH:  Yes.  I never want to come after Rebecca.  I mean, she says things that I want to sit and wait and just take them all in because they're important.

I agree with what she is saying and what other people are saying here.  I want to come to talk about the conclusions and recommendations here, some of them particularly, and why I like them and support them, but I would also like to remind us of our previous reports and the enterprises we have had because they are for me very characteristic and embodied in this report.

This is something of a contrarian committee in ways even within itself.  And I am very happy about that as a doctor and as a person who works with patients and wants to help them and families see their way through various conditions, including these matters.

Certainly I spend much more time with what Rebecca refers to as the "mundane" of the bioethics side than the esoterica.  I like that, and I like what we have done.

In fact, I was thinking of this just the other day when Leon asked me to speak about this and said to myself, "Well, you know, the great thing about this contrarian committee is that it confronts something that Nathaniel Hawthorne has Hester Prynne say in the Scarlet Letter, 'Beware of that which by long habit comes to seem like nature.'"

What happens is that we start the habit by talking in certain kinds of ways. Everybody is going to get so old. Alzheimer's disease is going to kill us. It's going to be terrible and all of that. But we’re not thinking about all the other things we have in relationship to growing old. Positive things like family, grandchildren, hobbies and friends.

And we have forever confronted these habits, some of which were good and some of which were not so good, some of which we agreed about, some of which we didn't agree, but made it so that it couldn't just slip naturally into the practice and the thought of Americans generally.

They may not like our reports altogether.  They may stir up controversy, as they certainly have.  If I can come back to our old friend Hawthorne, that is really what we have done.

Now, in the recommendations and conclusions here, again, I think they speak to that matter.  We, of course, as Gil said, have said flat-footedly that we think that euthanasia and assisted suicide are out.  I agree with that, but I agree with that not only because of what we are saying here, but I also agree with that, that this is just an old idea that keeps cropping up again and again in this society.

And various people try it, and it always fails.  It fails because of the kinds of things we're talking about.  It fails because ultimately it loses itself, is abused in relationship to the kind of people we are and we abuse it.   And so we should speak out now out of this experience.

The other thing that I like is we have our recommendation here worrying about inflicting problems in the process of trying to extend life.  I certainly agree with that, too.

At a level of practical significance, the kinds of patients that fundamentally come to think more often of euthanasia are the people who burn out in the process of care.  Very often the reason they're burning out is simply because the doctors have been extending things too far for them, asking more than they can deliver.  And the burnout case turns out to be a person who was just exhausted by the promises and the suffering and all kinds of things, plus the idea that maybe they feel they are a burden to other people.  Never forget that inflicting extra care on people is to ultimately burden them with the burnout syndrome.

I like what we say about advance directives, and I like the fact that we are more modest about it sometimes than I get.  You know, sometimes I get really zipped about them and wonder what is being said.  I don't like the term "living will."  I think that's too darn coy, and talk about dying here, but I agree that we have voiced it in an eloquent and coherent way.

We don't, by the way, talk about that one advance directive that I have begun to stamp my feet about, namely do not resuscitate orders.  We have data now that do not resuscitate orders fundamentally means do not care.  And the people suffer from that.  Perhaps it's just as well we don't put it in here right now because that would do more damage than good perhaps.

Valuing the caregiver, as we come to speak about that, I thought our speakers today were wonderful about that.  We need to value our caregivers.

And those of us who grew up in families .. and almost all of us did who are this age .. who were giving care in the process, I was saying to Mary Ann, "Gee, people our age, when we were growing up, gee, maybe one in three families, maybe even one in four, had either an old, elderly, infirm, disabled person, or a disabled offspring that they were caring for."

And the value that that was given .. by the way, that was given value within the family.  My wife and I have thought that much of the good luck I have had in life has been given to me because of the burdens my mother was prepared to take up in the care of elderly people.  And it worked in heaven, and they're giving it off to me.  Not only the sins of the fathers but also the goods of the mothers live in the next generation.  At least I've often thought that way.

I would certainly like and support the idea that we should have tax credits and tax benefits and make sure those things happen now in this contemporary era.

What we're missing, of course, is we don't have enough advocates, not simply for care but advocates that can put the flag up there as a wonderful life.  We don't have any Florence Nightengales.  We don't have the Mother Teresas that made people think that this was a life that was wonderful to live.

As I was saying to Ben, you know, Florence Nightengale rejected the idea of being a doctor.  She really wanted to be a nurse and transform the whole idea.

So valuing the caregivers is a wonderful theme in this.  And then, finally, I do think that if you are going to keep fighting habits, particularly habits on the most vulnerable people, like we have at this age, that we are going to have to have some kind of ongoing commission that talks about what these issues are, does each one in more depth than we have done it, and makes things happen.

I am very pleased with this report in every respect.  And I have full support for the specific recommendations that they offer at the end.

Thank you.

CHAIRMAN KASS:  Alfonso?

DR. GÓMEZ-LOBO:  I wanted to add my voice to the chorus here.  I am deeply supportive of the report.  I think that any reader would come away from it having a sense of deep human compassion contained in its pages.

And a way of facing a problem that does not turn its back on what people really are, the demented people are really persons.  In fact, I would say underlying the report are some very important principles, some very important principles about, first and foremost, a great respect for the good of life, even in its diminished forms.  And, of course, there is the principle of equality, of treating equally persons who may not be in their full display of their capacities.

On the other hand, I think that it is an important principle that part of our lives, our lives with our relatives and with our friends, et cetera, entails at some point letting go, letting die.  And that's a point where I sense that there is work to be done.

I think I hinted at this in the morning, namely that we have to think more about the way of making the distinction between ordinary and extraordinary means for the reasons I mentioned, that medicine seems to be precisely working according to those principles, trying to make treatments more beneficial, less burdensome.

I think this is not for this report but maybe for some future thinking because if we stick to those criteria, I think we don't have a reasonable way of arguing against medical obstinacy or the burnout syndrome that Paul mentioned.  And, again, I am pointing to the future in that regard.

But it is important to affirm, on the one hand, the goodness of life; on the other hand, the fact that it's not an absolute good.  It's a good that is frail and fragile and that there are moments in which we just have to open ourselves to the fact that we have to let go.

Thank you.

CHAIRMAN KASS:  Peter?

PROF. LAWLER:   Since everyone has been alluding to it, let me say straight out the report recommends a presidential commission on aging, dementia, and long-term care.

And someone might say the last thing America needs is another commission.  But let me make the strong point that this commission is really set up here to be unique, understanding death not as a problem to be solved but an experience to be faced.

It's not another Deweyian, New Deal pragmatic thing solving pressing social problems, but it's kind of a neat and important distinction that we as a people aren't particularly equipped to think of death as an experience to be faced.  But if a commission can accomplish that, it would be quite a commission.  And I'm all for that.  I was very heartened to see that.

CHAIRMAN KASS:  Anyone else?

DR. FOSTER:  I might make one comment and one comment only before we adjourn to your house for a luxurious meal.

(Laughter.)

DR. FOSTER:  I hope that the readers of this report outside are at least ten percent as enthusiastic about our work as we are enthusiastic about our own work.

(Laughter.)

DR. FOSTER:  I know we had to exercise our deltoids so we could pat our own backs, but I do hope that most people will look at the report, rather than our own praise for the report, as good as it is.

I don't disagree with anything that anybody has said, but it is kind of funny to listen here to everybody who says how great we are, you know.  And maybe it's because we're great.

CHAIRMAN KASS:  Yes.  It was making me uncomfortable.  I thought the only decent thing to do would be to offer some kinds of criticisms of what we have accomplished, but the hour is late and that's not the job of the chair.

I make one comment.  Frank and Diana and Ben and Bill Hurlbut may want to say something.  The purpose of this was not to lavish praise on the report but to make sure that we at headquarters have not somehow misinterpreted silence from those quarters from which we have had silence for profound disagreement that if we're going to issue this thing, we want to make sure that indeed, although some have had a larger hand in this than others, that this, in fact, goes forward as the work of all of ours, knowing, of course, that as this fractious bunch of professors is wont to do, there will be people who will not leave well enough alone and will append their personal remarks.

I've even done that once on occasion.  I think it adds to the richness of a report which is produced by a group.  And then you have various kinds of personal takes for emphases and for enlargements and for enrichments.  And I am very proud of the fact that this is a Council that has not submerged those kinds of differences and those views.

I would say this.  And before we adjourn, if the people who haven't yet spoken want to say something and to be on the record on this, by all means.

One thing, a comment that Gil made about how this little, tiny thing mushroomed into something much larger.  There was a certain point where there was a great deal of skepticism after a discussion of a very fine working paper that Eric produced.  And, in fact, he joined us for this, one of our number more given to skepticism so he doesn't see how we're going to be able to do anything with any of this.

At that point, Mary Ann was suggesting, well, we should write a 20-page white paper on the looming crisis of long-term care and be done with it, call attention to that problem.

Over here from this quarter, we have had the opportunity to give voice to something for which Rebecca has been a pioneer for years, calling attention to the limited wisdom of certain kinds of advance instruction directives, wisdom but limited wisdom.

And then there were others who sat.  And Bob Binstock in his presentation to us said, "Look, if you can do something about talking about medical decision.making to people who have impaired capacities and show people how you might think about this seriously."  I don't know whether he's going to like what we've done, but he certainly endorsed our taking this up as a serious problem.

At a certain point, the document looked like three disparate pieces.  And, in fact, even read in some way.  There was something on the dilemmas of an aging society.  There was something sort of seemingly freestanding on advance directives and then this stuff that sort of followed on the ethics of caregiving.

But I do think that if one thinks it through, there really is a kind of coherent argument in this work.  And that namely is that we begin, really, with the recognition of a certain kind of large social problem, maybe not as large as it seems to the pessimists, maybe larger than it seems to the optimists, but it's serious.  It's here.  It affects most families.  And it will affect more families before it affects fewer.

Insofar as bioethicists have tended to talk about this problem, they have tended along with the lawyers and following the precedent set in the cases taken what's not simply a procedural solution, but an attempt to get a substantive solution through this particular legal procedure if Rebecca's corrections have been finally taken.

The insight is that, however useful that is, that is not going to be a substitute for the necessity of caregivers, not least because the caregivers decide not only the question about what treatments the patient should not have, but what treatments the patient should have every day of his life. And that, therefore, the need for day-to-day caregiving requires one to think about, well, what are the goals of caregiving and what are the boundaries that prevent the caregivers from falling off the edge as they try to pursue and secure for the patient his or her welfare, benefiting the life the patient still has, no matter how reduced; and then to show the complexity of this in action at not nearly the level of abstract principle to really wrestle with cases, hard cases.  They're admittedly schematic.

The doctors have been very helpful to keep us from falling off the tracks altogether on those things, but to show that this doesn't simply yield to principle.  Principle sets certain boundaries, but these are hard things.  And the need for prudence and the difficulty in the concrete define the right thing.  Reasonable and conscientious people are going to differ.

We have put that kind of picture together, limited though it is.  I think there is a kind of internal coherence.  And there is a lot more argument to be had about some of these things.  Things that were raised in previous meetings are still in the air, but that we have been able to put together something like this and at least make it a subject of wider concern and make it... people talking about it is something that though I wasn't quite eager to do this either, I'm very glad that we have done it and done it this well.

And the last thing I want to say is that the massive credit and thanks for this report belong to Eric, who is primary draftsman.  I hope he's not embarrassed to have that said.  It was his vision, the ability to see some of these things, and .. forgive me for saying so in public .. with a kind of precocious gravity and extraordinary human sensitivity that has found its place on every page of this document.  On behalf of all of us, Eric, a big thanks to you.

(Applause.)

CHAIRMAN KASS:  Ben?

DR. CARSON:  I would add my congratulations because there are so many very important points that have been brought up and are well-discussed in the document.

I think it perhaps would be wise for us to acknowledge that it is a work in evolution because our society is in evolution.  And clearly, as we note the actualities of the aging of our society and integrate into that the technological advances, this document will change as well.

CHAIRMAN KASS:  Are we okay?  Bill?

DR. HURLBUT:  Just one little final note.  When we started doing this, I felt like we were in an awfully dreary field of thought.  And even the way we began our report with the term "mass geriatric society" sounds kinds of ominous.

I just want to say personally, that in thinking about these issues, as with the time when we thought about the issue of aging in our "Beyond Therapy" report, I think there is something really good about getting in, rolling up your sleeves, and dealing with these questions.

And I think currently our society has perhaps a disproportionate fear of Alzheimer's disease, particularly.  It's replaced cancer as the great dread, serious problem.  But in working on the report, it became increasing clear to me, in spite of the fact that we didn't come up with any direct solutions, it seemed like a tractable problem.

It's not a problem where we're running out of oil or something.  We have the human resources to deal with this, I would think.  And in the process in mobilizing those forces, we may relocate a deeper sense of hope in our lives and a deeper sense of meaning, both personally, familially, and as a community.

I was struck by Peter Rabin's presentation this morning because of the positivity of it, the hopeful dimensions that he brought up.  And I think we should release this report with a sense of hope.

CHAIRMAN KASS:  Thank you very much.  Excellent.  Anybody, I think everybody who wants to speak has spoken.  Tomorrow morning we start at 8:30.  The plan will be to have the session, first session, on "Taking Stock: Looking Back, Looking Ahead."

I hope all of you have received and read and should reread, if you even read once, the substitute Richard Selzer's story, "Atrium," which will be the main focus of the discussion in the second session tomorrow morning.  We will have a small public session at the end and adjourn around our usual time.

Adjourned until 8:30 tomorrow morning.

(Whereupon, at 5:07 p.m., the foregoing matter was recessed, to reconvene at 8:30 a.m. on Friday, September 9, 2005.)


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