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Thursday, September 9, 2004

Session 4: Aging and Care-Giving: Reflections on the Burden of Care

CHAIRMAN KASS: For the rest of this meeting, we turn from the topic of neuroscience, brain, and behavior, to questions having to do with aging, dementia, caregiving, and society — a series of topics that have a certain internal coherence to them.  I think the coherence — I don't have to lay it out, but I think we will see what it is as we go through it.

I remind you, since there are some people who wonder where the ethical issues are in all of this, that among the first responsibilities of this Council, as enunciated in the Executive Order, is that we should conduct fundamental inquiry into the human and ethical significance of advances in biomedical science and technology.

And while there is no particular technological innovation here whose ethical significance or human significance we are looking at, we are, in a way, looking at the human and ethical significance of the aggregate effects of every successful biomedical science and technology, which, amongst its great blessings, has produced a healthy human population into the '60s and '70s and '80s in an unprecedented way.

But as a possible cost of that success, we have the human significance of a growing population that is increasingly aged, and a population in which, although many people are healthier for a lot longer, most of us have to look forward to a protracted period of decline and debility in need to care. 

And it seems appropriate for this Council to look into this question and to try to lift it up to public view, if it can find the right means of doing so. 

We started two meetings ago very modestly with a little paper by Gil that explored the question of the concept of a demented person, and a discussion led by Rebecca on the limits of advanced directives — very small, modest beginnings. 

The last time we broadened the scope very widely, beginning with two views of the aging society: A social science view with Robert Binstock talking about Social Security, Medicare, and various related matters, and offering, in fact, a couple of challenges for this Council, one of which we will take up tomorrow. 

And Thomas Cole's sort of review of the meaning of aging and old age in modern American society, and raising for us what he takes to be the major cultural question, namely some kind of doubt about what it actually means to be old and especially infirmed in today's world, absent the kind of iconographic — the kind of coherent views of the life cycle to which his life iconography pointed us for previous ages.

We had a very fine presentation from Dr. Selkoe on the research in Alzheimer's Disease, and a companion presentation from David Shenk on some of the travails of having and caring for people with Alzheimer's Disease, and then a rather thorough treatment of the dilemmas of the caregivers, familial and institutional, from Geri Hall.

And that's where we were last time, and the question was:  how could we follow up that sort of broad discussion to try to produce certain kinds of greater focus?  In the sessions after this one, we will take up certain particular ethical matters, questions of the ethical attitudes of the old and soon to be old and dependent toward their beloved young descendants, and then the very difficult question about medical intervention in the presence of severe, moderately severe, severe Alzheimer's Disease, triggered by a fine paper by Eric Cohen presented — we'll talk about tomorrow.

And then we will have a public policy session with Robert Burt's presentation in the second session tomorrow.  The first session is, in a way, the broadest and to some extent least concretely focused.  But I think that that's not inappropriate.  After the last meeting, Mary Ann Glendon suggested that one of the things the Council might do would be pick up the suggestions made by Robert Binstock and others at the last meeting that we really are on the threshold of a large crisis in long-term care in this country.

And it would be important for the Council at least to explore the degree to which this is so, and to try to understand both its character, its dimensions, and its underlying causes.  And one could raise this question — if we were to proceed, really, in the spirit of trying to have a general diagnosis of this question, is this mainly demographic?  An economic problem?  Coupled with the failure of medicine to do adequately, to somehow eliminate the need for such care? 

Or is this also a cultural or ethical or spiritual one as suggested in part by Thomas Cole?  And if it is the latter, to what extent does our tendency to treat it largely as an economic and demographic matter aggravate those aspects of it that might, in fact, be matters of culture?  Are we concerned in the sense of caring for the aged and the dependent? 

Are we interested in just caring for them — that is to say, meeting their needs?  Or do we have a stake in caring about them and caring for them, not simply as needy creatures but as people still connected with us, full members of the community?

We have several papers that are in the briefing book that are intended to trigger this kind of discussion — a discussion of how well do we understand the difficulties that we face in coming to grips with the need to care for those needing our — needing care in the coming Geriatric Society, not just the people with Alzheimer's, but people with other kinds of severe dependencies that make it impossible for them to look after themselves.

Joanne Lynn's paper, not really presented as a long-term care problem, she treats it as end-of-life care.  But because she presents end of life as possibly lasting a very long time, in fact, she has I think successfully smuggled the long-term care issue under the rubric of how you deal with people at the end of life.  And there are several striking things in that paper that I hope you noticed and we can refer to it as we wish.

Mary Ann has written a very short paper, kind of a synoptic view, calling attention to what she thinks is the dimension of this question as well as some of its critical features.  And Peter Lawler has written a kind of cultural commentary, trying to point out as to why, if insofar as we're talking not just about economics and demography, but about the cultural, ethical, and spiritual need to care about and not just for why we face certain kinds of difficulties in — given our cultural predilections that he outlines there.

That I think is to set the table for a discussion which will go where it will.  I've asked a couple of people if they might be prepared to offer beginning comments, and let me start with Diana Schaub.

DR. SCHAUB:  Leon asked me if I would be willing to start the conversation off this session.  But I confess I don't know what to think after reading the three essays assigned for the session.

Mary Ann Glendon tells us that a caregiving crisis will soon be upon us, a result of living longer, propagating less, and sending women off to work.  She suggests that the Council could do some good, not by dealing in policy prescriptions but simply by sounding the tocsin and sounding it in such a way as to broaden the framework for discussion.

I don't know whether Peter Lawler broadens the discussion, but he certainly deepens it.  We learned that the caregiving crisis is not just a result of demographic shifts, shortages of women power and money.  It's more profoundly a crisis of our culture.  We find ourselves increasingly in need of care, and increasingly unlikely to be cared for. 

This is the predictable — and Peter seems to suggest inevitable — result of our individualism, which devalues care as a fundamentally unproductive activity.  In seeking to live carefree as radically, self-sufficient individuals, we are destined to live without proper care in our ever-lengthening periods of great need. 

The only true solutions that Peter speaks of for those with Alzheimer's being at home with large families, or attended to by the Sisters of Mercy, are, as he admits, solutions that are evaporating.  His is a grim diagnosis.  If he's right, then our condition is irremediable, inoperable.  We can understand it, but we can't do much about it.  Peter does not suggest that Americans could ever become more welcoming of either giving or receiving care.

Mary Ann spoke of the need to cultivate a certain tragic sensibility.  Peter digs deep into that dark ground. 

The third paper, the white paper from RAND, takes a very different approach.  It has a very American can-do spirit about it.  The authors speak not of a crisis but of a new set of challenges — challenges that lots of folks are already thinking about and addressing through a growing body of research and certain pioneering programs.

The authors deliver the good news.  We can adapt and reform our health care system.  We've done so before.  The hospice movement of the last few decades was a response to an earlier shift in the needs of the sick.  With the prevalence of cancer, a new class of patients emerged — the terminally ill and dying. 

The authors state that what we need now is a new movement to respond to the emergence of yet another class of patients — the declining, the frail, the demented.  This movement would combine curative and palliative aspects in their proper and ever-shifting measure.  Treatment would focus more on the various needs of the patient, less on medical diagnosis.

So the white paper gives a number of concrete suggestions as to how this tailoring of services to needs might be accomplished.  It sketches a cure for the ills of caregiving. 

I just have a couple of questions and a couple of observations.  To the extent that the crisis or challenge is demographic, is it also temporary?  Is it just a matter of seeing the boomers through to a decent exit?  I realize that many of the trends will continue — longer life, fewer children, women working, and perhaps our fundamental orientation towards individualism will continue.

But will those things all be more manageable once the boomers have passed, or not?  This particular generation, of which I am a tail end member, has always caused consternation to society by virtue of its numbers and by virtue of its character.  As it moves through life, it wrenches all thought and energy and resources to its concerns.

So I'm actually not too worried that we will fail to pay attention to the elderly boomers.  They've always been vocal and insistent about their interests.  They've also been inventive.  I suspect that they will change the shape of retirement.  It will be less retiring, but there will still come a time when the young old become the old old.

And I guess at that point I put somewhat more faith in the cash nexus and the laws of supply and demand than Peter does.  When the demand is there, wages will rise, workers will come.  Many of them will probably be immigrants, not fully acculturated to American individualism, and so maybe wiser about the ways of caring.

Caregiving as a calling may be superior to caregiving as a profession.  But that shouldn't prevent us from doing all we can to raise the standing of the profession and to attract into it those with a true calling.

Finally, I want to quarrel just a bit with a point that both Mary Ann and Peter make.  They both refer to our individualism-induced obtuseness or obliviousness.  Mary Ann speaks of how we tend to relegate obvious facts about human dependency to the margins of consciousness.  Peters says that more than ever before we experience ourselves simply as individuals.

And yet, whatever our declared views, we in fact lead care-filled lives.  Our careless language is not reflective of our care-full lives.  And they both — they do acknowledge this.  Mary Ann says it's still a fact that almost all persons spend most of their lives either as dependents or caring for dependents.  And Peter acknowledges that almost everyone today is some mixture of productive individual and loving caregiver. 

The wisdom of women about the sources of human happiness in the ends of life is now accessible to men, just as the productive knowledge of men is now accessible to women.  That doesn't seem to me to be a bad basis for devising public policies that support private life.  It may also be why the coming challenges are not more widely perceived as a crisis.  It's just the way of things.  We know our parents are aging, and we know that we will be there soon also.

Alexis de Tocqueville, an author that I know Peter knows very well, wrote about the detrimental effects of individualism.  But he also wrote of the uniquely American doctrine, which he calls "self-interest rightly understood," that counteracted the worst effects of individualism.  Tocqueville describes how an enlightened self-interest constantly brings Americans to aid each other and disposes them willingly to sacrifice a part of their time and wealth.

We clearly have a long-term interest in long-term care.  As Mary Ann says, if the outlook for dependents is grim, the outlook for everyone is grim.  Reflection on ourselves could spur improved care for others. 

Tocqueville also notes that frequently Americans are better even than their self-regarding doctrine.  They are capable of pure generosity.  On occasion, they care for others, not only because they believe it redounds to their own advantage, but out of the goodness of their hearts. 

So I guess I'm suggesting that we have some resources with which to meet the coming crisis — the much maligned cash nexus, our Tocquevillian self-interest rightly understood, and small but inexpungable reserves of human love and generosity.


Someone else with — Jim Wilson?

PROF. WILSON:  I would like to expand a bit on what Diana said.  I hadn't been aware of her views, but they correspond very closely with my own.  I think in trying to think about our responsibility to care for older people, we run a risk in this country from drawing our generalizations about this country from what we know of this country in its present state.

I think we would be well advised to look more broadly, and if someone wishes to pursue this issue we ought to look more broadly.  Let me give you one bit of data that illustrates the problem.  The survey is 10 or 15 years old, long before we began to worry earnestly about the retiring baby boomers, but I think it suggests a striking difference.

In the same year, survey analysts asked a representative sample of Swedes and a representative sample of Americans the following question:  who do you think should care for older people?  Two-thirds of Americans said, "Their children."  Eleven percent of Swedes said, "Their children."

Now, I suspect, without drawing too much significance to this study, that we could array the countries of the world along a spectrum from those who make the natural assumption that the children are caregivers to those who make the natural assumption that the bureaucracy or someone else or the government is responsible.

Now, the United States may be moving along this spectrum, but the survey, to the best of my knowledge, has not been repeated.  So I do not know whether we've moved very much.

Let me end as Diane started by speculating on some of the reasons why, just using this survey, Americans are a more caregiving people than our friends in Sweden.  And I suspect our friends in several other European countries.

It's not simply enlightened interest — a self-interest rightly understood.  It's the religious basis of self-interest rightly understood, about which Tocqueville also spoke.  This is the most religious industrialized country in the world, and I think the impact of religion on care is profound, both institutionally, because churches and synagogues get involved in it, and indirectly because churches and synagogues reinforce that belief among their members.

I think the second reason is we have a relatively weak welfare state.  We did not immediately follow Otto von Bismarck's suggestion made to defeat his liberal opponents in Prussia at the time he made it.  We did not follow the British experience.

And most of my colleagues in social science regularly reproach us for not having a bigger and fatter welfare state.  That may be a good or a bad criticism, but one of the consequences of it is is that we rely on each other more, because we are not confident that the welfare state will make a difference.  Indeed, a great majority of young people, when polled, say they do not believe Social Security will be there for them when they retire.  I think they're wrong, though it may be there in somewhat different form.

And the third reason is that this is a country, unlike other countries, of family-oriented immigrants.  Not all immigrants come here with families, and some who come here go back to the country of origin. 

But if you look at the Asians and Latinos who do come here, you discover they come here with a family orientation which produces two happy things for us — a large supply of younger people, some of whom can be hired to do work we do not wish to do for ourselves, but, much more importantly, a belief that family responsibility is critical.

These are thoughts off the top of my head, and each — and perhaps all may be disproved by deeper inquiry.  But my general point is, do not generalize about what the United States is like by making excessive generalizations about our individualism.


DR. LAWLER:  Let me degeneralize a bit.  I wrote the paper to be provocative, but, in general, I agree with Professor Wilson that what makes America different from a raw statistical point of view — and I'm not a statistics guy — it would be evangelicals and immigrants.

For example, I read an article in The Washington Post last week written by some guy from the New American Century, whose name I don't remember right now, and it said something like this.  That if it weren't for people who regularly went to church, our birth rate would be about the same as France.  This is the key variable.  Which would mean that, in fact, my paper is full of exaggerations, and the exaggerations would be along these lines. 

I said Americans experience themselves more as individuals than ever before, and I'm sticking with that.  But I didn't say Americans experience themselves always as individuals, because if that were the case we would be monstrously unhappy all the time.  We're individuals when we pursue happiness, but when we actually are happy we're something else — creatures, family members, friends, citizens, neighbors, whatever.

So there has always been that great American mixture described by Tocqueville that we're individuals part of the week, not individuals the rest of the week, and this is actually a pretty good solution.  But it's a solution that in some ways is intrinsically unstable, although I perfectly agree with Diana that we will never individualize love out of existence or anything like that.

So if what makes America different is we have immigrants who are family-oriented, we also notice that lasts for a generation or two, that birth rates in immigrant groups drop off after they're here for a generation or two.  But in terms of experience ourselves, say, as creatures, America is the land of religious revival.  And so the story of Europe may have been the story of constant religious decline, culminating in some post-religious era. 

That is not at all the story of America, and so in a full, non-generalized account of America right now, we would have to include that fact.  So I'm sticking with the we're more individual than ever before.  I didn't mean to say we were individuals and nothing more.  I just wanted to say that as we become more individualist, caregiving becomes a dilemma for us. 

But I also say in the paper that we're not really individuals all the time, because if we really were to think about this, we would kind of then destroy the non-producing class, and none of us wants to do that.  And so as typically middle class people, we're caught between being individuals and not individuals, and so the average American in a middle class family wants to care for his or her parents.  Who can deny that?

On the other hand, wants to be productive.  There is a conflict in the life, and it's — the conflict is getting progressively more difficult.  So I didn't mean to be, although I probably was, as doom and gloom as Diana said.  I don't want to be so deep that I'm not optimistic in some respects.

I have some faith in the cash nexus, but not all that much.  I do have, to say it the corny, old-fashioned way, somewhat more faith in the human soul, and not only the American soul finally.


DR. FOSTER:  It may be too early to say this, but — and Leon and I have talked about this before.  My concern about this topic is not that there's a problem.  It's been predicted for a very long time — and there are many people looking at it from the RAND Corporation to anything else.

The question I want to see — I want to be answered about or to have us come to an answer about is rather than just saying, well, we need to talk about the ethics of the aging population, is to ask ourselves, what question are we really asking?  I don't think you can do anything if you don't have a question that is susceptible to discussion and answer, rather than a generalization that almost everybody who works in the world knows about already.

And, I mean, I just don't think it — we're going to be very helpful to say, well, we ought to be kind to our parents, or we ought to do this, that, or the other.  They're either some real questions or they're not, and that's what I've been struggling with. 

When we started out on the stem cell, we had a real question.  Yes or no.  Yes or no.  I can't see what it is that we want to do, and I think we're going to be wasting our time if we just keep hearing reports about how many elderly there are and what their problems are and what dementia does for it, and so forth.

Now, you could be precise.  You could say, well, okay, let's look and see how we might deal with this problem if we were looking at policy or the government.  That would be something that you could look at. 

You talk about the diminishing birthrate in France.  What France does is they now have — you know, everybody can have a — that has a baby can have a good place to get them cared for, so that the mother can still go back to work, and so forth.  There are social solutions to this if you want to pay enough money to do it, and you could say, "Well, we want to do that."

I mean, I think everybody agrees, if you just read the newspapers, that we are not replenishing young people who are workers.  You saw The New York Times about Pittsburgh, how they couldn't replace the mill workers, and so forth and so on, there. 

Well, if you're going to do that, then you have to give the incentives to women in a new age that they can be maternal, and they can go into medicine or science or law or whatever and have their children taken care of well without having to sacrifice their — that would be an approach that you could say would be a specific thing that you could look at.

But what I'm worried about is just muddling around in generalizations that, in the end, that nobody is going to pay any attention to, or is likely not to pay any attention to. 

Now, I know from Leon's letter that I am a very marked minority in terms of this Council.  I mean, he says that there are lots of people who think we ought to do this.  Well, how many times are we going to listen to the fact that — you know, that a caregiver for a person with Alzheimer's Disease, and so forth, is going to sacrifice things?  You can't be productive or whatever.

So I just want to throw it open early on, and almost like this being we were talking at lunch today about, you know, sometimes maybe we needed Executive Sessions to just hammer this through. 

But what I would like to be convinced of is that at the end of this discussion, we do something that everybody believes is meaningful, that's answered — several specific things.  They are very big topics, if you're talking about spending more money, you know, for health care and for long-term care, and so forth.  I mean, it's — maybe we don't have the expertise to do that, but that's what I would like to hear. 

I mean, I don't — I don't want to sound mean or anything, because I've — you know, I mean, I know about taking care of dependents, and so forth.  But I just want to have — I really want to know what is the question we're going to address?  Or questions, if there are more.  And how will we make something worthwhile out of it, which is not only meaningful to us but meaningful elsewhere?

Some of you have read the Nature article that just came out, which I thought was a very — an assessment of our Council.  And one of the criticisms was, which was an unfair criticism because we were called into organization to address specifically the biomedical things and the stem cell things.  That's what we were told.

But we were criticized because we never addressed the big problems of ethics, of bioethics, you know, like health care, and so forth.  I thought that was — was true, but not — it was unfair in the sense that that's not how we were constructed.

But this, to me, is worrisome, because I can't see — and I've tried to think about it a lot since at the last meeting when Leon and I talked about it.  I'm trying to find myself saying, okay, you have a free feel.  Give us a question that you think that would be good for us to address, because I'm not smart enough to come up with a question or questions. 

I'd really like that to be a subject of this general discussion this afternoon.  What is it, specifically and in hard-nosed fashion, that we hope to accomplish and answer?  Mary Ann is already after me, so that's —

PROF. GLENDON:  Do we have to think in terms of a specific question?  This really goes to the nature of what we do here as a Council.  Are we supposed to think in terms of a specific question?  Or is it enough to note that the society is facing a set of challenges that are, in several ways, unprecedented? 

And that if — if they continue to be discussed within the framework that Alan Greenspan, again, warning for the second time this year on the problems of the Social Security system, if they continue to be addressed simply within an economic framework, decisions are going to be made about caregiving, about dependency in our society, that will affect all of us, young and old, without consideration of the non-economic dimensions.

So it seems to me that it's not likely — democracies, as Tocqueville taught us, are not very good at thinking about the long term for a whole lot of reasons.  It seems to me one of the services that a body like ours can perform is to think a little bit about the long term. 

One aspect of this whole problem that makes it unprecedented is something we haven't talked about yet, and that is the elderly are not the only dependents in our society.  There's the problem with who is going to care for the very young.  And one thing that happens, that predictably will happen in an aging society, is there are going to be fewer and fewer children. 

This is not only an economic problem for the labor force; it's a problem for how we think about the very long — out of sight, out of mind.  We are increasingly becoming a very adult-centered society.  Turn on your television.  Look at MTV and you'll see what I mean.  The more we become an aging society, the more we become an adult-centered society, the more we have to worry about children and child-raising families who are now in a minority.

So without framing a precise question, I do think that there are dimensions of this demographic phenomenon that are — the reason we care about them is that they are cultural.  It's not just a demographic problem.  It's not just an economic problem.  The aging of the society is going to affect our culture, what kind of society we become, in ways that are hard to foresee. 

And if we just lurch along and treat it as an economic problem, we may end up in an America that is not the place that all of us hoped and dreamed it would be.  That's a little start.

DR. FOSTER:  Well, let me answer first.  I did try to put an S on the question to questions.  I don't know that there's one thing.  I certainly agree with you in terms of the problem, not just economically, of children.  The estimates are that at the end of this decade 60 percent of children in this country are from one family — you know, one-parent families. 

There are not going to be families available here — even in this very religious country, there are not going to be families to take care of people.  And what that means is that we have to punt the care to somebody who is not family, in my own view.  So I can see no exit from this at all, either in terms of the child care, and so forth, to enhance the birthrate in this country, to the care at the end, because the traditional care, I don't believe, is going to be there.

Let me just give you a little anecdote.  My son was traveling in Texas and was coming back from a city on the Labor Day weekend in a modest-sized — it was Bush's home, where he used to live, in Midland, Texas.  And on the afternoon plane, there were 15 children who were lined up, young children, five or six years old, who were traveling to be with another parent.  That's a well-known phenomenon.

What was tragic is that the Southwest Airlines attendant who's trying to get them on the plane makes a public announcement to say, "Will the parents of these children" who are told by the airline not to leave the airport until the plane takes off — "would you please come back to check in your children?"  The families had just dumped the children and left them. 

So here all these five- or six-year old children waiting to get on an airplane, and the divorced parents — I don't know which one — you know, which parent they were staying with at this point.  I presume since it's during the week it's the primary caregivers — wouldn't even stay long enough to help the children get on the things.  That does not give me the confidence that you have expressed about the solution to this problem.

I don't see how you can — I don't see how any thinking person can say, "Unless the United States Government, with money from taxes, gets involved in health care to do this, that anybody is going to take care of it."  It is happening right now.  I mean, I take care of the poor, and I'm telling you there is — you know, somebody has to pay somebody to do it, by and large, even in the papers. 

Even if you take it in your own home, you're paying somebody to do that.  I take care of quite a few people who have, you know, a disabled person from cancer, and so forth and so on.  It's not the wife or the husband who is taking care of them.  He or she is still working.  It's some — it's one of these women, health care people at minimum wage come in there and work for the hospice, or whatever.

So what I don't — it seems like to me that you're making an appeal for sort of a — to use Peter's term, sort of a revival of caring, and I don't think that's going — maybe I'm misinterpreting you, but I think — I don't see how you can get away from the fact that this has to be an economically solved problem. 

I mean, every day I deal with people who can't get health care until they're dying.  Every single day.  You know, we take — we don't take health care as a right.  It's a right if you have the money to pay for it, like shelter and food and so forth.  If you have the money, you can get it.  But if you don't, you can't. 

So tell me where I'm wrong about this.  I still don't think it's going to help to write a paper to say we ought to be kind and love one another, and that children ought to take care of their parents.

PROF. DRESSER:  Dan, I think you're making the case of why a group like ours could usefully present this whole complex of unprecedented problems in their fullness. 

They are — you're right, they're being discussed to death in a very shallow way.  But it seems to me there is a value in naming the question, in naming the problems — let's put the S on it — in naming and pointing out that this is upon us one way or the other, and it hasn't been adequately publicly discussed.

CHAIRMAN KASS: Let's continue this discussion.  Gil, Robby, Peter.  I'll put myself in the queue as well.

PROF. MEILAENDER:  I'd like to think out loud a little bit about what the problem actually is.  It seems to me that we have a lot of things floating around here, and it's no — I sympathize with your desire to figure out what exactly we're supposed to put our finger on.

In one way we have a demographic problem.  In another way we have a cultural problem.  Peter and Mary Ann seem agreed that it's not just demographic; it's cultural.  I'm not sure how deep the agreement — I mean, I sometimes think Mary Ann thinks the cultural problem is produced by the demographics, and Peter thinks that the cultural problem is produced by something kind of very deep in us, or something.  I don't know.

But, okay, Diana and Jim have a certain amount of confidence in our ability to muddle through and deal with the problems, at least if we understand it demographically. 

I think there are two ways to state the problem.  One way of stating it, and I think, Dan, this is sort of what you have in mind when you say you see no possible solution other than, you know, government providing the resources needed — one way to state it is to say that there are going to be a lot of frail, dependent people who need care.  And they have to have it provided for them.

Another way to think about the problem, which I think must pick up the kind of cultural issue more, is to say there are a going to be a lot of frail, dependent people who need care, and they'd like to get it in certain ways from certain people.  That's a different problem.

If you think about the beginning of life, children, there are other ways to raise children other than in families.  There are even possibly more efficient ways to do it.  You know, you just parcel them out to responsible adults to do it.  We don't do that, because we think that certain kinds of attachments are important.

Well, similarly here, I'm sympathetic to the kind of we'll muddle — the government will help us to muddle through if the question is simply, will we find some way to provide care for these people?  Though I'm a little worried when the payer has an extraordinary interest in controlling the costs.

But, still, it goes much deeper, though, and I'm not sure that I see too much in Peter's or in Mary Ann's papers that help me to solve it.  It goes much deeper if the question is:  how do you deal with the fact that I really don't just want to be cared for when I'm old?  I want to be cared for by certain people who are attached to me in certain ways, and so forth.  And I guess I'd rather be cared for by anybody than not cared for at all if it comes down to that.

But I don't think that's what we want.  And if that's the deeper problem, then it is harder to say how we'll get at it.  But it's not just an economic matter.  I mean, it's obviously an economic matter, but it's not just an economic matter.  And I took at least part of what Mary Ann's and Peter's papers were getting at — was to try to push toward — you know, whether they want to say it the way I've said it, I don't know, but at least towards some sense like that.

CHAIRMAN KASS: Diana, quickly, then to Gil.

DR. SCHAUB:  Yes.  I just want to ask Gil a question.  Do you see the white paper as addressing that at all?  I mean, the RAND paper talks about this new class of patients and a different sort of care that would need to be provided for them, and it talks, you know, fairly extensively about the need for home health care workers and the training of those people and, you know, aid to families who want to take on these burdens.  I mean, it seems to me that that sketches the kinds of policy prescriptions that might help families, you know, assume these burdens that they want to assume.

PROF. MEILAENDER:  I think at least to some degree it has that in mind.  That's right.  And it suggests a way that government may, in fact, be able to support and sustain that larger cultural sphere.  So, sure, I think to some degree that's possible.

CHAIRMAN KASS: Robby George?

PROF. GEORGE:  Well, I certainly agree with Dan that we should be principled, but also disciplined and practical about the problems that we decide to take on.  But I think I'm a little more optimistic, Dan, than you are about our opportunity here to make a contribution to an important issue.

Let me reinforce just a couple of things that Gil and Mary Ann said, and maybe say it a little differently.  It might not be any more persuasive to you when they're said differently, but let me give it a shot.  There's a demographic issue here.  We all know about it.  Part of Dan's concern is that it's such a big — an amorphous issue that we could waste a lot of time just rolling around in the muddle of it.

But the reality is, with an aging population, in part made possible by the wonderful life extension that your profession has given us as a great gift, the reality is that the demographic problem is going to be addressed. 

It's going to be addressed by government.  It's going to be addressed in terms of public policy.  And there are going to be plenty of people who have a piece of that problem, and who will address it — who will need to address it and who will address it who are going to think about it essentially in cost-benefit terms, in a very — perhaps in a different sense than what we might like, a very pragmatic way.

Now, there should be somewhere somebody thinking about the dimensions of the problem that are not reducible to cost-benefit analysis, including those dimensions of the problem which raise the question of whether we can have — and, if so, what is the character of unchosen obligations — obligations to people by virtue of familial relationship, by virtue of being fellow citizens.  There are a range of dimensions to this.

There is an academic literature on unchosen obligations, and even some academic literature on the application of principles pertaining to unchosen applications to social problems like the demographic problem that we have.  But it's merely an academic literature, and I don't know of anyone in the public policy domain — perhaps I'm just ignorant of what's going on, but I — I personally don't know of anyone in the public policy domain who is doing much on this issue, certainly as it pertains to the demographic problem. 

So I think if we don't do it, probably nobody will, at least nobody will anytime soon.  But in the meantime, the cost-benefit analyzers will proceed forward on this.

Now, that doesn't mean that we can solve the whole problem by any means, but I think we can grab a little piece of it.  And the way we'll do that, if we decide to do it and if we do it well, is not by immediately identifying the question, but by trying to understand the problem in its breadth well enough that we can identify the smaller parts of it that would lend themselves to formulation in terms of discrete and answerable questions, but questions that aren't answerable in cost-benefit analysis terms and questions that are — whose answers will be controversial. 

And we probably all won't agree, and we certainly won't be able to persuade all of our fellow citizens about them.  But, nevertheless, there are dimensions here that need to be addressed in other than cost-benefit terms.  And if we don't do it, I don't think anybody else will.

Now, this I think relates to what Gil said about not only wanting to be cared for but wanting to be cared for by certain people on certain terms and in certain ways.  On that, it seems to me that we should have in mind that public policy really does shape culture.  Of course it is also shaped by culture, but there's a mutuality here, and part of that picture is that public policy shapes culture. 

So somebody ought to worry about the impact of proposed public policies on our understanding of, for example, unchosen obligations.  Someone ought to think about the dangers of public policy that is based exclusively or almost exclusively on cost-benefit analysis, for institutions like the institution of the family.

This is not to prejudge what the answer will be, given the real-life constraints that you've put your — you've called to our attention, Dan.  I'm not trying to prejudge this at all, and I don't think Mary Ann was trying to prejudge it by saying we need to bring back a culture that used to be.

But whatever we do in public policy in this country, it will have a culture-shaping impact.  And while we can't predict perfectly what that will be with any particular policy proposal, we can at least think about it and get a reasonable idea of what the likely consequences are, reasonable enough to make a judgment about whether we would recommend that the Congress of the United States or that the government or the states go down that road.

So what I hope we would do is, in a disciplined way, go forward with what we're going, looking at the problem broadly as we have been, but with a view to narrowing down those parts of the problem, narrowing down to those parts of the problem, our focus to those parts of the problem where we can actually make an impact as an ethics council, where we're not simply concerned about economics or cost-benefit analysis, but the human dimensions of the problem that aren't reducible to those terms.

CHAIRMAN KASS: Let me join in here, too, and — this is part of not just a private conversation between Dan and me that I don't expect you yet to have satisfaction on this.  And until you're satisfied, we all have more work to do, so I welcome the challenge.

With respect to some of the particular, more narrow focused questions, I think the subsequent sessions, and especially the ones tomorrow, should satisfy you.  On the question of to what extent should the presence of advanced dementia count in making decisions about what kinds of medical interventions for secondary medical problems — that's a major topic already.  It's only going to get worse.

Do the traditional ethical ways of thinking about that — are they sufficient?  Or do we have to rethink those matters?  That was a challenge Robert Binstock posed to us as something we should take up.  I think it's an important issue, and Bo Burke is going to address specifically certain kinds of public policy recommendations relevant to this topic.

Without being defensive, however, and not — hoping I don't simply reiterate what's been said, it does seem to me that we do have an opportunity to offer a real diagnosis here beyond the obvious demographic and economic facts.  Is there, in fact, a "crisis" in long-term care?  And what does that mean?

And to describe it in such a way that might, in fact, prevent people who have an impulse simply to go in there and fix — to fix it in a way that, in fact, could aggravate the question — aggravate the difficulty. 

Jim Wilson's comment about Europe should be taken very, very seriously.  The degree to which people come to regard it not as their business but as the society by means of the government's business to care for those who are in need of care, the degree to which people come to believe that, and the degree to which government moves in there to satisfy that belief, might very well contribute to the diminution of the attitude of caring.

Now, it seems to me we have out there in the public discussion of these matters — and this is too superficial and it won't be — won't capture everybody, but on the one hand you have the libertarians and the economic conservatives.  They say, "Look, this is a market problem."  When the demand rises and there are enough of the baby boomers, and they've got more money than people have had before, they will find a way to pay for the care that they need. 

They will make a choice whether they should work and pay somebody else to care for Pop, or they'll take the time off and care for them.  But that's — it's a free choice like everything else, and the market will adjust because it — supply will meet the demand.

On the other hand, there are people who — and I don't want to attribute a whole view to you from what you've just said.  There are other people who say, "Look, there's no way in the world the market is going to solve this problem."

This is part and parcel of a massive health care crisis in this country.  And unless the government steps in as — if not just for safety net reasons, at least for safety net purposes, it's to step forward and deal with this thing, we simply — people will not get the care they deserve, not only at the end of life but throughout their life.

Both of those solutions, notwithstanding their large differences, treat this thing really as primarily a question of resources and manpower.  And yet it has been said repeatedly around here, because these are questions of correlations amongst the generations and not simply the tending of bodies, it does seem to me how the society chooses to formulate what it takes the problem to be will make a difference to how they proceed to debate it.

And it may very well be that the dimensions of the problem are so great that we should stop worrying about caring about the dependent and simply care for them and get the best possible caregivers whether they actually are caring in a feeling sense the way family members are.  Maybe that's the right way to go.

But it seems to me very important that we sort of think through what it is that people actually want and hope for here, and what it is that we as individuals and as a community, who have children to support and parents to care for, and soon many of us are going to be in that spot ourselves, how do we want to define this problem as a society? 

I think just as the reproduction and responsibility report issued in some recommendations at the end — but the bulk of that document was diagnostic and an attempt to diagnose a problem in a way in which it hadn't been comprehensively diagnosed before.  Similarly, it seems to me what Mary Ann has called for here is an invitation to diagnose this problem beyond saying there are lots of these people and we should be kind to them.

Peter has given at least a reason to think that part of the diagnosis will make certain kinds of solutions or certain kinds of approaches very difficult, but at least it would be worthwhile being mindful of it. 

Now, it seems to me that the question for this session is:  how adequate is our diagnosis of this particular alleged crisis or impending problem?  I'll try to make one small contribution to that discussion.

The attempt to assimilate this to the health care crisis is understandable, health care coverage and things of that sort.  But it's — a lot of these people who are — especially 40 percent of us are destined for a slow, lingering death of enfeeblement and dementia. 

It's not clear that those are the sorts of things for which the medical system, as it has been traditionally set up, is really — it doesn't seem to be exactly a health care problem as much as it seems to be a problem of human care and that — they have medical problems to be sure.  But if you define it fundamentally as a medical problem, then you're going to be looking for a medically-based solution only.

And Diana — Joanne Lynn's attempt, really, to take — to sort of smuggle the large question of the long-term care of the people who are a little loopy and who are in decline, under the end of life medical care problem is an attempt to try to take advantage of the fact that the country cares about medicine but doesn't really care about caring — I mean, as a matter of policy, caring for those people who don't have acute medical problems that you can diagnose.

Now, it seems to me if that intuition is right, somehow beginning to define this problem in a more concrete and thorough way might be a contribution to the way in which the community as a whole will come to debate these things, even if we don't have a particular policy recommendation on the cultural question.

I think you're right that we should find some more manageable things as well, and I'm hoping that the next sessions will be on a narrower topic.  But here I think the — Mary Ann says, "Look, there's a looming crisis, a long-term care crisis."  Is that true? 

And if so, how should you describe it in such a way that you're thinking about it in a sound way before you go about designing — trying to design policies or programs that might make it better or that might try to make it better but in fact make it worse, if, in fact, they sap the energy of people to give the care that, in fact, the old and the dependent want and need.

Now, I think that came out — I don't know if it's persuasive.  I think I said what I was hoping I would say. 


PROF. DRESSER:  First, an anecdote to defend Sweden.  My sister's mother-in-law just died, and her three children were quite involved in trying to help her through that, and dealing with all sorts of care issues.  And so to what — to the degree that it's a deterrent to family involvement, it wasn't in that case.

One set of questions, one way to approach this would be to try to take a Rawlsian approach and say — we don't even have to be under the "veil of ignorance."  We could just think about what would a just system look like?  What kinds of choices should be out there?  What kinds of services?

I think David Shenk did a good job of writing about the suffering that's out there now, the way that people are struggling with this very patchwork system.  And we — I think we tend to deal with it as individuals, and it's fortuitous.  We think, oh, I'm lucky, you know, my parents are doing well.  And, you know, God forbid, I get into that situation.  And I think that's largely how we handle child care, too.  It's, well, you put together your own crazy arrangement, and that's what you do.

Are there things that we'd like to see that would be different?  And also, what would be defensible expectations for someone like Gil?  I think we'll get into that in the next session, but what is he — what is defensible for him to expect in terms of the kind of care he wants?  What is defensible for children to say in terms of, you know, I — you're important to me, but I have other projects, too, and I have my own children.

So I think those are very much the topics of ethical inquiry, appropriately.  And they have to do with biology and mortality, so I think they're bioethical issues.

DR. FOSTER:  I just want to make one statement about which — every one of us sitting around this table is going to be okay.  All right?  I mean, I've got — most of us have enough money, and we have it intact.  We're going to be okay.  Okay? 

So we can't sit around this knowing that we're going to be okay.  I mean, I'm sure my children will take care of me.  If they don't, I have enough money that I'll get taken care of anyway.  But there are vast numbers of people in the world, which I deal with every single day, that don't have that option.  So we need to be careful about saying, "Well, how are we going to deal with — you know, with Gil's problem, and so forth?"  I mean, it's much deeper than that.

And if you — and it's also medical.  I mean, one of the things we're going to talk about — the average person who comes in from the nursing home with Alzheimer's, and so forth — and our hospital has five to six different diseases that we deal with.  So to say that it's not a medical problem is — is beyond belief.  I mean, it's part of —

CHAIRMAN KASS: No.  I corrected myself in the middle, Dan.  They have secondary medical problems.



DR. FOSTER:  We just have to be careful as being upper middle class people to think that what happens to us is what's happening to the nation or to the world.

PROF. MEILAENDER:  I'm expecting all of you to care for me.


DR. FOSTER:  And your poor old body, Gil.



DR. CARSON:  I think we have to also recognize the fact that there are different definitions of who the elderly are, because things have changed very significantly in the last couple of decades in terms of who is elderly.

You know, when I was a kid, you know, when you were 50 you were elderly.  Now you're a spring chicken at 50.  And a lot of it also has to do with the state of health.  You know, Alan Greenspan is 78 years old, but, you know, he is healthy, he's active, he's doing a lot of things.  So I think that has to go into the equation.

Also, because we have the ability to keep elderly people going now for long periods of time, even though there may be significant quality of life issues, as Dan was just bringing up, should we do it?  I mean, I think, you know, as we're advancing in our medical knowledge, you know, we have the ability to extend people's lives very, very significantly.

And I think one of the questions that has to be addressed on a national level is:  where do we draw the line?  Which set of diseases or combination of diseases, what quality of life, you know — or is it just arbitrary, and do people just get to choose on their own, you know, "I've been, you know, completely devoid of any mental faculties for 10 years, but want to be kept alive regardless of anything that comes down the pike."

I'm just wondering if maybe we oughtn't to be discussing some of those issues.


DR. KRAUTHAMMER:  I'd like to address Dan's objections and difficulties with this issue.  You were talking, Dan, about how ultimately we know what the problem is, or there is a big problem out there that we all agree upon, largely demographic and ultimately economic.  And we know that ultimately we're going to have to deal with it by taxes, by having people help.  We're not going to recreate a culture.

I think that's true, but I think what we can do as a Council, and as people who have at least the leisure of having a little bit of time to look at it before the crisis hits, is to look at the unintended cultural consequences of economic solutions.  At least to start thinking about them before they happen.

When you were talking about ultimately we're going to have to use our taxes and help these people, I was thinking about the fate of the AFDC program — welfare — which was founded for the most humane of reasons, as a way to help widows and orphans, and who could be against that? 

And then, as there were cultural changes happening in the '60s and '70s, we kept it going because why would you want to decrease aid to widows — to single women, ultimately, and children at a time when their numbers were increasing.  And then, in the mid '80s and '90s, we realized that we had unintentionally helped to accelerate the disintegration of families and created a system designed to encourage single motherhood, with all of the consequent cultural catastrophes attendant to it.

So we abolished it, and in a spirited debate in the mid '90s in which there were all kinds of predictions about how we would have this incredible rise in suffering, and then when it didn't happen people attributed all that to the economic boom of the '90s, but then the recession set in, and, in fact, that catastrophe hasn't happened.

And, in essence, the abolition of AFDC has had a remarkable, small yes, but a remarkable effect, at least statistically, in arresting certain cultural events, cultural trends.  So looking at that experience, which I think your reference to using our taxes and ultimately having to help these older folks triggered this, here was a model which occurred 50, 60 years ago, people did not think through the unintended cultural effects of these programs. 

I think as other people who are almost exclusively looking at cost and benefit, almost exclusively looking at the economic way to approach it, and economic results, I think one thing that we can contribute is to look at the possible cultural effects and to anticipate them before we embark on the programs which you look at and which most people looking at assume inevitably is going to have to be a government affais, is going to have to be an affair treated economically, and it's going to have to be ultimately supported by taxes.

So it's a modest thing that we can do, but I think at least it's something and it's worthwhile as a beginning in thinking about what we can contribute.


PROF. GLENDON:  So we still have this problem of naming and diagnosis.  And it seems to me that to think of the problem as a crisis in long-term care is too specific.  I think we really have to start with a more general demarcation of the area of problems — that is, the challenges that are facing an aging society. 

It is a confluence of demographic events that have brought us into a place that the human race has never known before.  It is the increase in longevity, the lower birth rate, and the changing roles of women, in combination, that have produced a whole range of problems, of which the crisis in long-term care is but one.

So that would be a stab at how we would present what we're talking about.  Then, I think because we're all — I think a test of whether there's anything here is whether we can get Dan to move at all.  So I'm going to make one more stab at it.

Dan, one way to think about it would be, so what happens if we — if the country just muddles through, hoping that we will be able to take care of these problems as they arise through immigration or through various kinds of government programs? 

I think very predictably two things will happen, and with all the caveats about comparisons to Europe.  Nevertheless, Europe is already there, and their experience shows us two things.  One is that if you view this problem as a problem of competition for scarce resources, you are going to have conflict between the elderly and the people who would prefer to have government take care of the elderly on the one hand.  That's one group.

And the young poor families in our society on the other, and it would be desirable if there is some way to replace that conflict with the idea that we're all in this together and we have to solve that problem together.  So there's one set of predictable consequences if we just try to muddle through.

The other is more sinister, but you can see in Europe, as the economic crunch becomes heavier and heavier, and the conflict model prevails, that it's going to be tough times for the weakest and the most vulnerable.  And so Dr. Carson raised these really hard, serious, important questions.  We don't want to get careless about answering those questions.  We want to give them the serious attention they deserve.

So I would say the most striking part of the white paper was calling to our attention something we don't like to think about, that 40 percent of us are facing long periods of disability.  This is something new.  A hundred years ago pneumonia carried people off.  This is something new.  We don't have experience to tell us how to deal with it. 

And at the same time we're dealing with that, we have fewer childful — is that a word?  Child-producing families in our society than ever before.  And immigrants aren't going to make up for it.  They'll delay it.  It won't be — the crisis will not descend on us as quickly as it has on Europe, but it will come.

DR. FOSTER:  Well, let me just comment about my immovability, and I'm listening carefully.  But I was once accused by some medical students, because I had written an editorial in The New England Journal of Medicine where I said that the level of the blood glucose did not relate to the complications of diabetes, you know, with blindness, and so forth and so on.

And then, subsequently I had changed my mind.  They said, "Well, Dr. Foster, why did you change your mind?"  And this is a statement that I always say.  When the evidence changes, I change.  Okay?  So, and when the evidence doesn't change, then I don't change, whether that's medical or otherwise.

And a big study was done that showed that the editorial that I had written was at the time correct, but subsequently in a massive study of the effect of glucose showed that we were wrong, because we didn't have enough data to do it.  So I'm listening carefully to see if there's any evidence that would persuade me that I am wrong in my position.

Can we muddle through?  I mean, I'm perfectly — I was on the Dallas School Board.  I know perfectly what Charles was talking about and the detrimental effects of some public policies that we take.  The health care in Britain, and so forth, I mean, has in many ways — or Canada has in many ways been flawed.  I'm talking about the single payer things.  They're not good systems in one sense.

But they're better systems than having 40 million people who can't get any care at all, I think, and that's — so I'm perfectly willing also to look at the things.  But I'm just — I only want to say that when the — I will — I am listening very carefully, Mary Ann, even if I don't show it.  Okay?

CHAIRMAN KASS: To help provide more evidence, could we return to the way properly chastened by Dan's admonition, to the original question, which was:  to what extent do we have an adequate terminology and an adequate diagnosis of this problem?  We've got just about a few more minutes in this session.

But, I mean, what do we think about the way in which this problem has been presented by Mary Ann, with Peter's cautious — is that a hand?

DR. LAWLER:  Robby George, a little while ago, used the phrase "unchosen obligation."  But under our law, I think there is no such thing as an unchosen obligation right now.  So I have every confidence in the world that Gil's children will care for him if he falls in the 40 percent, if he's lucky enough to fall in the 40 percent and nothing else gets him first.

On the other hand, they don't have to.  They can — anything might happen under our law, because our law is becoming progressively more choice-constituted, progressively more individualistic.  But our whole system depends upon people taking unchosen obligation seriously anyway.  People think of themselves some of the time not as individuals.  People think of themselves some of the time as children.

And even a standpoint some of the time citizens have — if there's a vacuum, then government ought to step in.   But it's not self-evident to me it would be the best thing if government stepped in.  If government steps in, it means there sort of is a cultural problem, because individuals are not — people — Americans aren't doing what they have always done in the past, so to speak.

And it's also unreasonable to believe that any economic solution could solve the problem, or, in fact, you could only make the problem worse — our inability to talk well to make sense out of the tough phrase "unchosen obligation."  So if we were to go around the room and talk about what unchosen obligation means to me, we would have a number of different and conflicting answers.

Nonetheless, Professor Binstock said last time — I actually looked into this — a billion and one studies show that the whole future of our health care system depends upon Americans taking the idea of unchosen obligation seriously.  And so maybe we can take it seriously.

DR. FOSTER:  Could I just make one, and then I'm through for the evening, for the day.  The other — we've talked about these economic issues, and everybody wants to talk about the cultural issues.  But one of the other things that's going on in our country right now, it's not only the already uninsured, is that every company that is struggling with economic survival is cutting pensions and retirement.  And so what we're seeing is our small businesses don't give health insurance or retirement.

So you've got a drastic — unless something amazing happens to our economy, the middle class people are not going to have any money — you know, it's $30- or $40,000 a year right now if you have to be in an institution, or you have somebody around the clock in a home.  Many places — $50,000.  Not many people in their retirement even now have $50,000. 

But if you have your retirement cut — I mean, it's not just the airlines.  It's in every — every business is cutting the benefits to their employees, and that's another risk that is under the economic rubric that makes me think that that is such a central part of the problem.

CHAIRMAN KASS: Let me ask you this, Dan.  Just taking a possible — thinking about down the road to possible policy recommendations that might be offered here, do you think it makes a difference, speaking now both as a clinician and as a man who has been around a number of decades, do you think it matters whether we think about building large nursing homes for people with dementia, or whether we choose instead to reimburse home nursing, providing care in the homes?

In other words, is the way in which one sort of thinks about the — and, obviously, there can be different solutions for different people at different stages.  But if you really see this as, let's say, society's attempt and an act of solidarity to stand with people who do not have their resources, it matters a lot which of the possible — which of the possible alternatives we offer, and which ones we would recommend depends partly on questions of feasibility but also partly in terms of the goals that one would like to be supporting.

Do you think it's out of the question that in days of fractured families, fewer children, many people are going to get to old age and have no children whatsoever to expect to have, you know, these — what was the — unchosen obligation.  Do you, nevertheless, think that we should make every effort to support families in their ability to care for their own?  Or do we want to say the community will care for it; it ceases to be any particular group of people's obligations locally?

DR. FOSTER:  I said I wasn't going to say anything more.  I would much prefer a system, an economic system from the government that would place health care workers in the home and for the family as opposed to building more buildings.  Now, if you're comatose and, you know, you're going to have to be taken care of 24 hours a day, sucked out and turned to keep from decubituses, you just can't do that, even with — you know, with — because we're not even talking about LPNs. 

I mean, we're talking about people who have been maids before, you know, who come in and oftentimes form, you know, very close relationships with families.  I think that's a very important way that would help conserve some of the other things that people have.  So if you ask me, "Do I want to build more nursing homes, or would I prefer to have people being able to come home?" the latter overwhelmingly, but that's — I don't know which will be economically more expensive or cheaper.

CHAIRMAN KASS: Okay.  Diana?

DR. SCHAUB:  But both what Charles mentioned, speaking about the unintended cultural consequences of economy policies, and what you're talking about now would require talking very much in terms of policy prescriptions and trying to make predictions about the results of specific policies.


DR. SCHAUB:  And it seems to me that would be — well, I don't know, somewhat different than the broadening of the framework of discussion approach.

CHAIRMAN KASS: Yes.  No, I was using that as an example to try to indicate that when one came down to the question of policy, and one would, of course, try to think about the unintended consequences of doing A rather than B, I was teasing out from Dan a certain intuition that he has both as a physician and as a human being about what the desirable nexus of care would be, other things being equal and without exaggeration. 

And that depends — what that means to me is that he has, whether articulated or not, a certain tacit understanding of both what the dilemmas are and what the more desirable alternatives are.  And I think it's very important that those tacit understandings be made conscious and explicit, that it — that Dan, in other words, is interested, as I think most people in this room would be, and not only for themselves but as much as possible for as many of our fellow citizens, that they should not simply be cared for in the sense of tended to, but in places where people actually care, not because they still remain connected, not withstanding their diminished status.

Now, it may be economically infeasible to do that, but before one simply adopts the economic solution — if I could just repeat myself — it would be nice to have that firmly in mind, that one doesn't want to pull the rug out from under that in unintended ways.


DR. KRAUTHAMMER:  Mary Ann asked how we might sort of — what we might call this issue.  I think what we're looking at is we might call it the economic and cultural consequences of the adult-centered society, and I like her formulation.  It's not just care for outsiders.  It's what happens when the median age of a society is rising?  It's attention, the center of gravity, all the political weight is in people of increasingly rising age.  What happens?

It's an extremely interesting question.  On the economic issues, I think we could be more policy-oriented because obviously a lot of work has been done.  On the cultural, I think we would have to be more speculative and sort of cautionary, saying, "If you do X, it might have a cultural effect."

But I just want to throw in one datum, which is I was just reading a paper by Nick Eberstadt on infertility in the Western world, and it is astonishing.  He points out what we really often overlook.  The United States is the only advanced industrial country anywhere that is maintaining — has got a replacement rate for its population, and it isn't only immigration, although it puts us way over the top. 

He points out that if you take it away, we're about — we're between 2.0 and 2.1, which is essentially replacement, whereas the average in Europe is 1.4, which is catastrophic.  It means that you lose a third of the population every generation. 

So the interesting effect of that is that we have a laboratory.  We in America have a real cushion.  We do have a crisis approaching, but it is approaching slowly.  It's slouching towards us.  It's not crashing in on us.  It's crashing in on Europe, and we have the advantage of looking at what is happening in Europe, where it's happening at an unbelievably rapid rate — median age is rising by — you know, dramatically, and really unprecedentedly.

Here it's going to happen a lot slower, because we are replacing our population, and we are incredibly agile and experienced at absorbing immigrants.  So we have a cushion.  Even though it's going to be a problem, it's still — it's not a year or two away.  It's a decade or two or three away.

And using the laboratory of Europe and East Asia, interestingly, which is also in demographic collapse, we can learn a lot about the economic effects and the cultural effects, which are far more subtle.

So I'd suggest as part of this inquiry we could use or get experts like Nick and others who have looked at this and can talk about what's happening in Europe today, East Asia today, and that would inform us.  It would not be all speculation.  It would tell us what really happens when the median age jumped from 20 to 40 within a generation.

CHAIRMAN KASS: Last comment by Robby, and we'll take a break.

PROF. GEORGE:  Well, I forget who said it, but it's true that disagreement is a very hard thing to reach.  The trouble is in discussions and debates of this nature, people very frequently talk past each other, and they think they are disagreeing, but sometimes they are in what my friend Hadley Orcus calls "heated agreement."

So I'm not sure whether we've managed to reach disagreement yet, or to some extent we've talked past each other.  So let me take a little stock.  Please correct me, Dan and others, if I'm wrong in this stock taking.  There is an enormous demographic problem having to do with aging, and the aging of the population, life extension, birth, dearth, and so forth.  And this problem has enormous economic consequences and bears very heavily on people at the lower end of the socioeconomic spectrum.

I think everybody is agreed about that.  I think also everybody agrees that it's a societal imperative, it's an ethical imperative, that we do our best to come up with a system, whether that system tends to be more market-oriented or more social democratic, but some sort of solution to the problem, to the extent that problems like this can be solved or at least managed, that comes to the aid, especially of those who are most in need, which is not people like ourselves around the table but a lot of other people in the country and in the world.

Okay.  Agreed.  Now, some of us have been also pressing the point that in thinking about the problem we ought to be aware that thinking about it in cost-benefit terms, or purely economic terms, will mean neglecting ethical issues which arise by virtue of the fact that any proposed policy solution or managing — management of the problem will have effects, some of which are not obvious, some of which are probably utterly unpredictable, but not — probably many of which are at least not obvious, and they're worth thinking about.

And that if we think about them, we have to think about them in light of ethical concerns we have about what kind of culture is a good culture for human beings to live in. 

I don't think, Dan — correct me if I'm wrong.  I don't think that you are quarreling with that, just as we're not quarreling with the proposition that this is an economic problem that bears very heavily on the poor and has to be thought about in those terms.

But if that's right, then where is the disagreement?  We're not economists.  We can't solve the economic problem.  But we know that we have to think about the ethical issues in light of different possible economic solutions ranging from the more social democratic to the more market-oriented.

Are we not putting enough emphasis on the economic side?  Are we failing to see that the economic solution really is more obvious than I think it is, or that some of us at least think it is?  And that if we focused on it properly, we would see that we can eliminate some of the possibilities on that spectrum from the social democratic to the more market-oriented, and that a truly — a sound concern about ethics would be focused on narrowing those options to the ones that seem to you to be the right ones?  Or where are we?  Do we disagree?

CHAIRMAN KASS: Could I speak on his behalf, since we've talked about this at length?  If you'll allow me.  And if I don't do you justice —

DR. FOSTER:   You'd do it anyway, so I have to allow you.

CHAIRMAN KASS: No, I wouldn't.  I wouldn't do it anyway.  I wouldn't do it.

He was very careful at the beginning.  It was not, is this an enormous problem?  The question is:  is this an enormous problem that this Council can say something useful about as opposed to simply wring our hands and saying, "This is an enormous problem, and it would be nice if we could do something about it."

He's a practically-minded fellow, at least as — in many respects, but as a member of this body, it may be that he might want something in which we are able to say yeah or nay, but at the very least to say something about which people won't say, "That's nice.  They met.  They talked.  They worried.  They wrote.  So what?" 

And I think it's absolutely salutary for the President's Council on Metaphysics to take such admonitions and challenges to heart.  It would not be enough for us to simply have an interesting conversation.  If we can diagnose the problem in such a way that helps people actually think concretely about how to make it better, I'm fairly confident if Dan saw that we were able to do that he wouldn't mind.  But he hadn't yet — at least at the beginning of this session, hadn't yet seen that we have done that or are sufficiently far enough on the way to make him satisfied with that.

As my client, did your attorney do a good enough job?

DR. FOSTER:  Yes.  I thought Robby's summary was very good.  What I've tried to say, and it may — and you pointed out — is, I just want to have — I'm not against ethics or against morals or against wishing the culture of the nation was better and trying to work — I just want to do it, as you say, in a way which might have some impact rather than just writing a report that somebody might read and say that — okay, that they sat around and did it, that there ought to be something that could be defined by questions. 

I mean, one of the things that Ben and you talked about, and we're going to talk about tomorrow, is what are the limits, for example, in health care in terms of the economy.  So, yes, I'm — that's a — you did a very good job for me.

PROF. GEORGE:  Can I ask either counsel or the client one question?  Just to be perfectly clear.  Is Dan — Dan, are you asking for us to make specific policy recommendations?  Or would it satisfy the concerns, as Leon has articulated them, that we have raised concerns — if in the end this is what we do — raise concerns about ethically significant issues having to do with the unintended consequences of proposed solutions to the economic dimensions of the problem.

If it were the latter, would that be a disappointment to you?

DR. FOSTER:  No.  I mean, our previous experience in terms of enhancement did not result in any sort of policy decisions.  Our decision as we came along, in terms of stem cell, resulted in policy recommendations.  So it might be yes or it might be no.  I just don't want us to muddle around. 

I mean, I think we ought to say what we're going to do to see if we could be helpful.  That's all I care about.  If it should, and our time is short — maybe very short, depending on, you know, whatever happens with the elections.  Either way, you know, but — but we don't have time, as Charles said, to do all of the economics. 

I mean, the best people in the world are thinking about this, you know, and so we — but we might come to a conclusion about an approach that Leon posed to me about enhancing care for the elderly in homes when the family does not exist anymore that would help — to help personalize it and maybe have tenderness and love there as well.

So the answer is, no, it would not mean that I was out of it if we didn't have a policy decision on that, no.

CHAIRMAN KASS: Let's take 15 minutes.  We'll return to allow Gil Meilaender to be a burden to all his friends.


(Whereupon, the proceedings in the foregoing matter went off the record at 3:37 p.m. and went back on the record at 4:00 p.m.)


CHAIRMAN KASS: Well, I probably can fumble away a couple of minutes while the stragglers return.  I'll be very brief, actually.

In this fourth session, the title of which is Aging and Care-Giving:  Reflections on the Burden of Care, we move from the large, amorphous, societal, cultural and political questions, of providing long-term care to narrower ethical and familial issues of the relation between the old and the young, between those in need of care and those who are called upon to give it.

I should say at the start that this question is less about a vexed, ethical conundrum with an "Are you for it or against it, yea or nay?" conclusion, as it is about the proper ethical attitude or disposition that we ought to have in this area, and not, as is the usual case, what is the disposition of the strong toward the weak and needy, but rather what is the proper disposition of the old, the weak and the needy or those who contemplate becoming old, weak and needy toward their young, strong and abler loved ones, and, in particular, their descendants.

And the general question is, what is the right or noble or decent way to think about what we, the old, and soon to be enfeebled, owe to our own loved ones and potential care-givers.  Should we be interested primarily in easing their burdens or enabling them to shoulder them?  That would be a shorthand way of putting the question that Gil Meilaender's provocative paper has produced.

The little paper was published in 1991, if I'm not mistaken.  I read it at the time and I thought, "What a guy, to take -- to say such a thing in public, 'I want to burden my loved ones.'  How could anybody say anything like that?" And I filed it away.  And then when we were sort of thinking about this question and the question of the ethical obligations of the old to the young, I remembered this paper.  It turned out to be very short.  I remembered it as being long and full and so I pressed Gil to expand it and he wrote a dialogue with some strawman interlocutor which made the case on his side much too easy.

And so I had another argument with him on the phone and I said, "Look, Gil, let's give the other side the benefit of the doubt and so — truth in advertising — he constructed this dialogue using the friendly interlocutor, assigning to the friendly interlocutor who resembles the Chairman more than a little, the best arguments he thought the Chairman could make, and he then saw fit to answer them.

I will reserve the right to speak in my own name, without counsel, in the discussion, but thanks to Gil for extending those remarks and stimulating us to think about what is I think a very serious and important topic, at least for us, as members of families and therefore, by implication, for how we want to think about this thing in the large.

I've asked several people to offer beginning reflections and their responses to the questions raised by Gil's paper and I'd like to start with Janet Rowley.

DR. ROWLEY: At the outset I should emphasize that I formulate my response not as a philosopher and ethicist or a political scientist and I could just hear Gil reading this brief essay written in 1991.  It's full of surprises of unusual, I might even say, perverse points of view.  Consider the title for starters.  I want to burden my loved ones. 

In his paper, Gil tries to make a case that to be mature, moral, human beings we must be willing to accept unwanted and unexpected interruptions to our plans and we've already alluded to this in the earlier discussion.  And then he goes on to say perhaps the best way to develop such human beings is to burden loved ones in our dying.  Later in the expansion that Leon has mentioned, Gil states that he chose a catchy title to get attention and that, in fact, he does not want to be a burden to his family.  And then this is further expanded under Tab 12 between Gil and the friendly interlocutor that clarifies and I have now just learned, updates Gil's thoughts on a number of issues, particularly the responsibility of one's children.

Gil makes a valid point which has also been raised in our earlier discussions this afternoon.  The families are connected and that of necessity means that members have claims on one another, although often our society seems to deny these claims.  In the context of family, one should expect to accept whatever comes, unbidden and inopportune as it may be.  A quote from Gil, "we wither before we die and therefore somebody must take care of us."  And Gil suggests that if you don't want to be dependent, then you just drop off the edge.  The question then is, aren't there limits on the burdens we can lay on others?  And then the problem becomes to define those limits.  And he says we're only obligated to do what we can do.

It also depends on the nature of the burden.  Decisions about management of end-of-life care are one type of burden.  Actual on-site physical care for an individual is a very different burden.  So too are the family relationships: husbands and wives make a contract until death do us part.  Children make no such contract.  Here, the dialogue brings in the community and the fact that the community has limited resources and must make choices and then the dialogue ends.

So what are my concerns and how do I respond?  I would echo everything said about the potentially ennobling impact of taking care of the dying loved ones, if the individuals involved are psychologically and financially able.  I've watched many dear friends die and I thought that I hoped I will die with the same dignity that they did and with the loving care and support that they received from their families.

For myself, I've struggled with this same question and concerns, but from a different perspective.  When I wither, I believe I have a responsibility to figure out how not to be a burden to my husband and my children.  Gil and others may consider this selfish, however, that's the way I was brought up.  My mother lived in fear that she would be a burden to me and she did everything during her life to prevent that.  In fact, she died suddenly at age 82, being active until the very end. 

My husband had a similar experience.  His father vowed that he would not be dependent on his children and he was not.  So that's how we brought up our children.  They have their own responsibilities and families and care for their families is helping to make them, I hope, at least, more mature and more moral human beings.

I want to expand this and this will, in fact, be somewhat repetitious of our morning or our earlier conversation this afternoon.  I think these opposing views play out in our society.  Some think it is their right to be taken care of.  Others, that it is very important to be self-sufficient.  Clearly, unexpected catastrophes occur and the most prudent plans may be for naught.  Equally, many poor people cannot plan for a secure old age. 

Now I've spoken sometimes and people may think intemperately, about the moral and ethical responsibility of members of our aging society to the young.  Our society is constantly making political choices.  We choose to spend many billions of dollars on Medicare because it's good politics and the AARP and the individuals that it represents demand it.  I appreciate the fact that Medicare will provide various resources for me, if I need them and this will reduce the burden on my family, but I cannot avoid feeling very guilty that this help for me is borne by young children for whom no one speaks.

So just as the community issues were not settled by Gil and the interlocutor, I can't develop a politically acceptable plan to balance the needs of powerless children with the demands of powerful seniors. 

That said, to be true to our charge as a bioethical council, shouldn't we focus on devising a morally robust resolution of care for all members of our society at both ends of life, the beginning as well as the end?  We're currently considering one aspect of the complex interlocking problem, namely society's responsibility to older citizens, especially disabled older citizens, without simultaneously considering the potential impact of these discussions on the resources available to the young.  Our discussions have not been framed in the context of choices.  For me, that is a potentially fatal flaw in our current proceedings.

CHAIRMAN KASS: Thank you very much.  A lapse of memory keeps me from -- oh, it was Charles, I think.  Okay.

All right, then let me simply declare the floor open for general comments.

Michael Sandel.

PROF. SANDEL:  I have a question for Gil, but I'd like first to say how much I admire this essay, above all, for its ornery, grouchy, contrarian charm.  And there was a subtext, a figure, a theme that I thought was most revealing and amusing which was the crotchety view of athletic activity as when Gil describes himself sweating in the hot sun teaching his four children to catch and hit a ball.  No dewy-eyed romanticism here of fathers playing catch with their kids or to swing a tennis racket or to shoot at free throw.

This is hard, arduous work and I pictured Gil, as I read this last night, running alongside the bicycle, ready to catch the child who might fall while learning to ride, sweating, puffing, panting and resenting it all the way.  I loved it.  So that's to express my appreciation for this, well, picturesque essay.

My question is this, granted that there is a virtue in conveying to children the moral teaching that you can emphasize here about accepting unchosen burdens and responsibilities and accepting interruptions in plans, granted that basic moral concern, do you think that there is an asymmetry in the willingness of children to bear burdens for their aged parents, an asymmetry between that willingness and the willingness of parents to bear burdens for their children, do you think that there is and if so, do you think that that asymmetry is just contingent or the product of a kind of selfishness on the part of children, failure of moral education or do you think that asymmetry, that there is something to that asymmetry?

PROF. MEILAENDER:  I take it you said, "Do I think there is," but I take it you mean, "Should be actually, not just is," right?

PROF. SANDEL:  Both.  Do you think it runs insofar as there is an asymmetry, do you think it runs deep or do you think it's something we should ideally try to eradicate and rise above?

PROF. MEILAENDER:  No.  In the discussion with the friendly interlocutor, who is very friendly, and who pressed a somewhat similar question, I think I acknowledge at some point that there is a sense in which part of the understanding of being a father, a mother, is indeed that you are trying to enable the child to get started in life and that's a little different.  I mean it's not symmetrical with anything in the responsibility of the child.

On the other hand -- so I want to say yes, in part to what you said, otherwise we'd just all be sort of people and we wouldn't be people at different stages of life, connected in different kinds of ways.  So I do think there is an asymmetry.  But having granted that, I guess I'd want to say that and you know I've said it several times in different ways and I'm only going to be repeating myself, that part of launching one's children well in life would be precisely seeking to inculcate these lessons that you mentioned.  And I don't know too many better ways to do it, too many ways that are more naturally connected with the course of human life than to make something like the kind of point that I was trying to make here.  So that it's asymmetrical, but children just by virtue of being children of particular parents do, I think, also have some responsibilities.  They're not formative responsibilities in the same way, and hence it's not symmetrical, but there are still tasks that fall to them and we'd be deficient if we failed on them.  And we all do fail on them to some degree and we're all deficient to some degree, but we should recognize that.

Am I getting to what you asked?

PROF. SANDEL:  So would you say that the impulse of some parents, and Janet mentioned this impulse, to spare their children this burden, would you say that that isn't a noble impulse on reflection?

PROF. MEILAENDER:  Oh no, it's noble.  There are lots of kinds of nobility.  And it's not even entirely bad.  I think that one would have to see how it works itself out in every particular parent/child relation to know what one wanted to say about it.  I think it would become worrisome to me only insofar as we begin to think about it in a way that started to communicate the sense that the best thing was really to be self-sufficient.  I mean Janet used that word.  Now that's a word, see, I think if I communicate to my children the best thing would be to be self-sufficient, in my lingo, I'd be teaching them to live a lie.  None of us is self-sufficient.  I wouldn't want to communicate that.

So if it works itself out in such a way that that's what I teach them, I've made a drastic mistake.  That doesn't mean that in lots of ways, I mean we may not also try to relieve our children of various burdens.  You don't just pile them on as much as you can for the sake of their character, but certain ones that cut very deep into human life may be we're better not relieved of.

PROF. SANDEL:  Would you go so far as to say as there are, we've been told 40 percent of people are living in kind of a disabled condition, but in the case of those parents who are fortunate enough not to be in circumstances of need and posing a burden, given the like, would you say that they were depriving -- would you go so far as to say they were depriving their children of something important?

PROF. MEILAENDER:  I might in some cases, yes, and maybe their grandchildren, too.  Their parents could give an example of precisely what it means to be a human being who recognizes those unchosen obligations.

Again, I don't want to make it too strong because in the nature of the case, I don't think there's kind of a cook book recipe here and I don't think there's sort of a one-size-fit- all principle, but I'd be willing to contemplate the possibility that it was a deprivation, yes.

CHAIRMAN KASS: Can I come in because my concerns are, as you know, similar to Michael's and similar to Janet's.  And I think I accept your understanding of the meaning of our connectedness, of these unchosen ways and Janet put it, I think, beautifully, the spousal relation is chosen in a way the child-to-parent relationship is not, in the best case, even though the child's existence is spoken for affirmatively by the parents who make way to have such a child.  The child is just there. It's certainly true that the Western Biblical tradition makes it a commandment to honor your father and your mother, (presumably because it needs commanding), but somehow if we're in good families, many people would feel the pull of being helpful and being caring toward their parents.

But thinking about it as an aging parent and grandparent, I'm more moved by other considerations, at least additional considerations and they don't have something to do with not wanting to interrupt the lives of my children as much as it is to play out the meaning of a couple of -- one is a proverb and one is a small parable.

Yiddish proverb, when a father helps his son, both laugh.  When the son helps the father, both cry.  Now tears are part of life and when it's time for weeping, it's somehow appropriate.  But it's perfectly appropriate for my mother to change my diapers as a young child.  It is somehow -- it might be obligatory that I change hers should she become incontinent, but it's not because -- or that my children should have to change mine.  It's not because I'm afraid of interrupting their lives, I'm afraid of somehow inverting and jeopardizing the kind of relation that I've had with them throughout my life which is a relation of parent rather than of second child or someone in second childhood.  So it's not just the question of not wanting to burden them, but wanting somehow to preserve these relations and allow this thing to go forward.

The parable and my wife Amy and I have a disagreement about the original version of this.  It's a parable told by the Rabbi of her mother's congregation some 15, 20 years ago.  It's a story about a bird of unspecified gender.  Amy thinks that it was a mother bird.  I think it was a father bird, who was carrying fledglings just learning to fly up to a big river.  And the adult bird gets the first little fledgling up on the shoulder, takes it across the middle of the stream and says "little bird, little bird, when I'm too old and feeble to fly, will you do the same for me?"  And the little bird said, "of course, father" in my case or mother in Amy's case, "I'll do the same for you" at which point the bird with a twist of the wing drops the little fledgling in the river and drowns it.  And does the same with the second.  And he gets the third little bird up there and he says "little bird, little bird, when I'm too feeble and old to fly, would you do the same for me?"  And the little bird thinks for a minute and says "No, father, but I would do the same for my own children" at which point this little bird was taken across to the other side.

There's something right about that story.  There's something, I think, right about the attitude of that story.  Not that we should be callous, but that we should somehow want primarily that the work go forward and not be deflected unduly by the care of ourselves in our enfeebled condition.

I would be disappointed if my children didn't feel the impulse.  That's to speak about their side.  I can count on them wanting to do it, but I think it would -- and there are things to be learned about the sadness of human life and what we're summoned to do in our unchosen obligations.  But I don't -- there's nothing in me that wishes to summon them to do that work.

PROF. MEILAENDER:  Do I get to respond?


PROF. MEILAENDER:  Just a couple of things.  You're right, that spouses have chosen each other in the way children have not quite chosen to be children in this family, that's exactly the sort of experience that the existentialists used to like to talk about is thrownness and finding oneself in the universe.  All the more reason why it's a more fundamental place where one's character is shaped, where you learn whether you're really able to come to terms with the contention.  So the description is right, but what we conclude from that, I think is still up for grabs.

But then just a couple of brief comments that get to the gist of your saying and your parable.  You want the work to go forward and I want to know what the work is, exactly, you see.  Is the work just getting on with my projects?  No.  I would like to get on with my projects.  Actually, I'd like quite a bit to get on with my projects.  All the more reason why I need to learn that the work has to do with the relation between the generations. 

And I guess -- and here we come, I believe, to what really does lie at the root of the difference.  This inversion that seems to you unnatural, finally, doesn't seem unnatural to me.  If growing old and aging and becoming feeble and unable to care for myself is part of the trajectory of human life, then of course, although I will always be a father to my children, that will not mean the same thing any longer.  It will have to be inverted in some ways.  It's very hard.  I'm not sure for whom it's harder, probably for the parents, although not always.  But it doesn't seem contrary to nature to me.  It seems precisely part of the natural trajectory of human life, that those of us who live long enough should get there and ought to not be bothered by that.

DR. ROWLEY: Actually, in the interest of not going on and on in my commentary, I cut out just a sentence that said that part of my wishing to try to figure out how to get out of my family's way, if I'm incapacitated and I still am able to do something about it, is the notion that I want them to think of me as the kind of person I was when I was competent and able and that to the extent that their memories of me are then clouded or -- that isn't the right term and I can't think of one right now, but are changed because of me in an enfeebled state, that's something that I personally and maybe for vanity really would like to avoid and it's of great concern to me as an individual that there are some aspects of our society make some of those kinds of choices for some of us more and more difficult to reach and I think that we should be more amenable to allowing older individuals to choose, have more say over how they end their lives than we're willing to do right now.

CHAIRMAN KASS: Peter and then Paul.

DR. LAWLER:  I agree with Janet and Leon.  I only have one kid.  That I would not choose to burden my daughter in this way, maybe for reasons of vanity, maybe for reasons of preserving the proper relationship between father and daughter.  But we've already said so many times today, 40 percent or so of us won't have any choice but to do this, so I can willingly take refuge in the thought that it will be in many ways good for her if I do it.

Now Dan might object.  This is very touching of us to be saying these things, but what are the public policy implications of all of this, to which I can only respond at first we should all be like Gil and maybe all Americans should be like Gil for then we would have no problems.  That is, we should all have lots of kids to minimize chance there and to spread out the burden, I think at least four.  We should all get Ph.D.s in something like religious ethics so that we can properly instruct our children in the joys of unchosen obligations  or whatever the phrase is we're using.  And then we could just go home for the rest of the day because there would be no public policy problem.  The children would step in.  The only role of the government would be to assist the children in a minimal way of accepting the burden they have no problem accepting. 

It would be better if they're like Gil and like the very rich Dan, a combination to make sure everything is okay.  But the problem we're facing is our public policy situation is and this is sad to say, very few of us are like Gil.  That is, very few of us have Ph.D.'s in religious ethics.  Very few of us have lots of kids.  Very few of us have lots of money.  And so the solution given here which I think is a beautiful moral solution to the problem 40 percent of us are going to face is not a solution applicable to society generally.  And that's because most of us don't think like Gil.  We think more like individuals who tend to maximize choice.

And I do agree with Leon, there reallyis an asymmetry here.  Raising children is nothing but a joy and rarely a burden because the children are full of promise, always progressing, on the way to something.  Watching your parent move away from something and something which is natural, yet unnatural.  We can say it's natural to die of Alzheimer's, one point of view, but from another point of view, for a long history of human nature, hardly anyone ever did.  And so this is something -- even if it's natural, it's something new that parents fade away in this way.  And so the burden, I would say that children who do this will learn all sorts of things about human beings, are ennobled and deepened in many ways.  But it's much tougher than raising children.  And for that reason, they're ennobled and it's for that reason they learn, but we shouldn't minimize this or even expect children nowadays for all the reasons we've talked about to do this routinely.

So the question remains, what exactly is a public policy implication of Gil's wonderful writing here?

PROF. MEILAENDER:  Leon, let's get on the record that more Ph.D.s in religious ethics is not the answer.  Okay?


CHAIRMAN KASS: Do you think it's a matter of indifference with whom they study?

PROF. MEILAENDER:  No, I think it has very little to do with that, actually.  I just think that what you learn at your mother's knee is probably much more important than a Ph.D. in religious ethics.

CHAIRMAN KASS: Let's see, I have Paul, Alfonso and Rebecca.

DR. McHUGH:  I really don't know how to enter this conversation because I agree with almost all the sentiments that were expressed.  And I thought perhaps the best place would be to come in with a slight disagreement with you, Leon, when you said that "Honor your father and mother" might be there because it was perhaps not something we did naturally. 

I don't like this description of Moses as a kind of public health figure or anything of that sort.  I like to see him as someone who is deciding for us what might be first steps towards the rest of the things in the second table, the reason that only a father and mother is where he positioned it, rather than further down, do not steal, adultery and things of that sort, was because he felt that that was perhaps the place where character might be formed.

Now I don't believe that he meant by "Honor your father and mother" that necessarily had to involve for you or for everyone else that you became expert in adult diapers.  But I do think he did mean for us to understand that it's through this understanding of growing infirmity that we saw life as it was and prepared ourselves, formed our character to deal with the other demands, temptations and other things which would come up in this life.

For all that I agree with and many of the different expressions of particular situations that would be extra burdens and I wouldn't want to put on my children.  At the same time, I think that my children should be thinking what it means best to not just honor what I felt as my role such as I want to always be in control, but being in a place where they decided how honoring me or my wife, let's say better, would help ultimately for them and the children that come after them.

I've said this before at these meetings on things of this sort that our times have just changed so radically.  When I grew up, everybody had old folk in the home.  Everybody had to do certain kinds of nursing tasks.  Certainly in my home my mother took care of her mother and her aunt until they died and did a variety of things that sometimes I very much resented, taking time away from me for it.  But on the other hand, I felt that this was not only what my mother was before, but that in the process she became even more gifted as a person in this life because she did do that and that I learned from the experience.

So I come in at that level.  Why is that commandment out there in the position it's in and why should we be seeing it as a kind of thing that is imposed upon us?  For a psychiatrist who is interested in helping people develop their character, this is some place where I like people to begin.

CHAIRMAN KASS: Let me hold back and I'll respond later on.  There are people waiting in the queue.  Alfonso.

DR. GOMEZ-LOBO:  I'm not sure whether Gil needs an attorney at this point, but I'd like to side with him, whether he accepts me on his side or not, I don't know.

First, I think, of course, there is playful ambiguity in the expression "burden one's children."  Of course, there's a sense in which we do not want to burden them in a general prudential sense, you know, we want to have our health insurance, we want to be clean on all of that.  I think it goes much deeper.  It has to do with this radical contingency of life which has been my experience in life.  In other words, no matter how much I prepare things so as not to be a burden for my children, I'm open to the possibility that it might well happen.  Who knows?  I may end up being taken care of by one of them in spite of the fact that I've all kinds of arrangements not to be.

And that's a point where I don't like your second parable and it's this.  I think that you know I'm deeply committed to my mother.  My father passed away already.  But I would never ask my children, "Are you going to take care of me in my old age?"  I think that part of the love one expresses to them is to be totally selfless in that regard, perhaps expected, but never sort of asking for it.  That would be the only way I would view it.

Now considering that, I am in symphony with what Gil says.  It may well be that I will end up caring for my mother in ways which I will find natural, in spite of the fact that it may not correspond to the expectations, conventions, etcetera.

Now a final point about the image one leaves behind.  Again, I'm open to contingency.  I want my children to perhaps remember me as a young father, then as an aging father and then perhaps as a very feeble father.  I just want them to remember me as having a sense of humor, even at that stage.

CHAIRMAN KASS: Rebecca, please.

DR. DRESSER:  I come from the type of family, my mother and her mother, of an "I don't want to be a burden."  That was their attitude, and I think it has good impacts on children, that is, I think it goes along with fostering an attitude of "don't be a whiner, do what you can for yourself," that sort of attitude.  But I can see two negative effects.  One is, I think it's unrealistic because of the contingencies.  And I think it probably -- it's not vanity, it's pride, it's hope.  It's hard to think about ourselves as becoming dependent, so this sense that well, I can set everything up so I won't be a burden to anyone, I think is often illusory.  And even if someone stays in physical health, they're still getting frail and so there is going to be a worry, a psychological burden and there's no way you can avoid that.

I think being in touch with the fact that one's children will be worried about you is probably a good thing.  It makes you more responsive to them.

And the second bad impact I think it can have is I think it makes it difficult to ask for help when it's needed.  And so there is an effort to try to manage something that could be easily managed by a family member or someone else and there's an effort to put that off and there's a lot of unnecessary burden on the individual there.


PROF. GLENDON:  I think there is a large overlap, actually, between Gil and Janet in the sense that listening to them it sounds as though both of them, and you too, Leon, are very concerned with the parent's role as a teacher, teaching children about how to live and ultimately teaching children how to die, so that when Gil says provocatively that he wants to be a burden to his children, as I read him, he's saying I want to teach my children about how to be a certain kind of person.   And when Janet says she most definitely doesn't want to burden her children, she's not saying that she hasn't tried to bring her children up to be the kind of people who would be only too ready to assume that burden, if need be.  So I do think there is a large intersection there.

And this conversation reminds me of the short story that is in our book, Being Human, where we see a family in one of those stories in the Liam O'Flaherty story, that is simultaneously taking care of a baby and a senile elderly person and that story is very admonitory because here's a family that takes for granted that this has to be done, but the baby and the elderly person have the same kind of needs.  They both wander off and they have to be confined.  They both have to be fed and cleaned and personal needs attended to.  The family does it, but they do it with such hope and joy in the case of the baby and it is a real chore in the case of the old man.  I think we just can't get over that. 

So one of the things that it seems to me everybody is concerned about, it's not vanity.  It's more again the sense of what you want to teach your children.  We would like to be able to teach our children something about dignified living and we'd like to somehow teach them something about how we meet the physical trials that come at the end of life.  And the dementias take that away from us.  This is really one of the ways in which so many of us are in a new ball game.

And then finally, I so much appreciated what Janet said about the importance of not losing sight here when we talk about an aging society, of what that means for our culture and the way we treat children and child raising families as adults become predominant and politically powerful.  So thank you.

DR. ROWLEY: I just -- I have always been struck by a Japanese movie whose title I should remember and I don't.  It took place in I suppose the late 1800s or maybe earlier in a mountain village in Japan and the story was about the culture in this village which when individuals, if by chance, they reach the age of 70, the culture was for the oldest son to carry the septuagenarian up to the mountain to a cave area and leave them.  And they died.  And the efforts of a woman who was very physically fit and 70 trying to ruin her health so that she would die, but failing that, just forcing her son to take her up to the mountain. 

Now you can say that's so alien to anything that we think about and that it has no bearing on any of our conversation.  But I have to say I found that a very powerful and moving movie.  And it comes back to the question of what is the responsibility of the older individual to try to reduce their burden on not only the family, but in this case, on a society which is just living in a marginal way in a mountain village.

And I don't think we asked any older individual what is your responsibility to reduce your impact on society?  Again, an older individual who has Alzheimer's isn't in a position at least toward the end to be able to make those kind of decisions, but it seems to me that there is this continuing pressure of older individuals to say I want more and more.  And we're going to get to this tomorrow, I'm sure.  But shouldn't we think about the other alternative, and again, it goes back to using resources that I think would be much better spent on infants and young children.  But isn't there a responsibility of a responsible, older individual to think about using fewer resources rather than more?


DR. CARSON:  One of the things that obviously has changed significantly is the fact that elderly people can be elderly for a very long time now.  It used to be that they would die, but now that can go on for 20, 30 plus years. 

Now I will say personally, like everybody else here, I certainly wouldn't want to be a burden on my children for any extended period of time.  I know my mother felt the same way and she's lived with us for 14 years now.  I don't consider it a burden at all.  I'm delighted to have her with us, to have had her influence on our children and I count it a privilege to be able to help take care of her because she did so much for me.

But recognizing that our society is growing older and that those family dynamics have changed and that there is a much more "me first" oriented society today than there used to be and I don't think that anything that we can say is going to change that.  I wonder if in terms of a policy issue, we should be looking at are there ways in which large groups of elderly people can be taken care of in a compassionate and in a way that's fun for them where they don't feel like they're a burden on their family.  It seems like we have the capacity to do that, as a society, if we use a little creativity.

CHAIRMAN KASS: If there are no hands, let me join in here with a brief comment to Ben and then go back to a couple of other things.

It seems to me to connect this conversation with the previous one.  We have a couple of paradoxes here.  On the one hand, especially in old age, the ties that bind us, other things being equal, increase in importance.  Career begins to fall away, it's the visits of those who mean something to us that sustain us and we look forward to seeing those who are our own.  And therefore, the belief that you could somehow substitute the care of strangers and the removal of the close ones is -- it could be desired on the one hand because it doesn't burden those you love.  On the other hand, it substitutes -- it substitutes paid-for companions and care-givers for the relations that one wants.

Now those of us who as Dan said, might have — might be well off enough, could have both.  One could get nursing care one needs either in the home or with enough opportunity to have visits and stay connected, but it seems to me that one of the paradoxes is one wants to spare one's loved ones the real burdens and I'm talking about the ones of caring for people with advanced Alzheimer's disease.  That's not like — just making a decision.  That's 24 hours a day and really exhausting full-time work — One wants to spare one's family of that and yet one doesn't want to, at least in the early stages of that disease, to having children simply cut out and institutionalize their fading parents.  So that's one problem.

And the other paradox seems to be in the way in which you look at this problem, from the two sides of the parent/child relation.  It seems to me perfectly possible to say one wants to teach one's children by example and exhortation, that they should be the kind of people that would feel it in their hearts to want to help out, to be there when needed, to be informed, to be present, to do what -- you want them to be those kinds of people.  And yet, you're reluctant to be the object of that kind of attention yourself.

And I'm not sure how you slice this.  The grandchildren introduce a nice wrinkle into this because one of the ways you might be able to justify becoming the kind of person that your children would have to look after, although again, it depends upon how big this burden is, and whether it really robs your children of their ability to look after your grandchildren in the proper and full way, but it might be that the only way in which your grandchildren can learn the lesson that you have somehow managed to teach your children is to see your children actually giving care.  So that if you move this out from just the two generations and beyond, there might be some kind of example here in which this is the only way the young learn about the contingencies of life, and how parents step up to the plate when it comes their way and they can't avoid it.

But on the binary relation, it seems to be one might want to embrace this view: I want my children to know how to act when contingencies strikes me down, strikes someone down, but I sure don't want that it should be spent on me.  And I don't know how you cut that one.  This is a way in which one could perhaps agree with Janet and me and agree with Gil and Alfonso, simultaneously.

PROF. MEILAENDER:  But of course, I don't actually agree with your second point.


PROF. MEILAENDER:  Except of course, I don't agree with your second point.  It doesn't seem to me a bad thing that I should be the object of it.

CHAIRMAN KASS: Willy nilly, we are going to be, so it's partly moot.  But I don't see how --

PROF. MEILAENDER:  The first point is the point about what I would like the character of my children to become.  The second has to do with what I think my own character should be.  And you see, I think that what you're saying is I would like my children to learn how to really care for people who are frail and dependent and possibly even demented, because it's important to do that.  But I wouldn't want to be the sort of person who needed care like that.

CHAIRMAN KASS: No, no, no.  Here's the way to put the question sharply.  Let's assume you have enough money to arrange for the kind of care that you will need when you start on your, God forgive me, 10 years of decline into mental enfeeblement, and you can arrange for this in advance.  You've got a lot of money.  Do you arrange to make sure that strangers come into the house and give you your care or that you go to some kind of decent institution and have strangers provide it or do you because of the lessons you want to give your children and make sure that they don't miss out on the opportunity?

Which do you choose?

PROF. MEILAENDER:  The last, the latter of those.


PROF. MEILAENDER:  Because I think it is the most humane.  It best captures what it means to be human beings, connected in certain ways.

Now always remember with the caveat that came out in the discussion with the friendly interlocutor that all of us can only do so much.  There are limits to what we can do.  Different people are capable of different things and so forth.  But if I've got that much money, which is not going to be the case, I bet I can arrange a way that that can work.  And if I can arrange it, then by all means, I'd do it.  I haven't inquired exactly whether my children think that's a good idea.

PROF. GEORGE:  Leon, what's the argument for the former choice?

CHAIRMAN KASS: The argument for the former choice and I don't know whether this is pride or vanity or something else, but as much as possible to try to preserve the parental/child relation in the way in which it has been, at least until such time as — thanks to the success of medicine — lots of us are going to get a second childhood, not just an occasional person.

In other words, Janet put it in terms of the way in which she'd like to be remembered.  I would put it in terms of the way in which I would like my children to relate to me.  It's a very -- there's another Biblical story about the drunkenness of father Noah and his sons.  Some of us have actually had a conversation on this and I think my opinion is perhaps in the minority, but there's something to be said for those sons who refuse to traffick in their father's nakedness and who cover his shame.  Not just for his sake, but also for theirs and, in a way, for preserving the relation there.

And well, I'm not going to be able to do this very well on the spot --

PROF. MEILAENDER:  Surely we are not talking about trafficking in shame of the father's nakedness here.

CHAIRMAN KASS: It's not trafficking, but it's --

PROF. MEILAENDER:  Well, that's exactly what you said.

CHAIRMAN KASS: It's -- it is an extremely painful thing, extremely painful thing for children to participate in the degraded life of those they love.  It's an extremely painful thing and the question is whether that's a gift, admittedly, they're going to rise to the occasion.  They will do what they have to do.  The grandchildren will learn.  But I'll put it somewhat starkly.  I don't think one wants to provide as a gift to one's children, even a passing thought, even the opportunity for a passing thought, "Pop would be better off dead."  That's not, it seems to me, the way in which -- what it is one wants somehow to arrange things such that they will.

PROF. MEILAENDER:  Remember that the initial piece was stimulated by a discussion about advanced directives.  And one of the things that's always seemed to me actually exceptionally puzzling and in some practical ways misleading about a lot of approaches to advanced directives is that they seem to posit a certain moment in life which is "the real me," the me at the peak of my powers, which moment then ought to be kind of determinative for the rest of life and that seems to me to sort of mistaken in a lot of ways.

Whatever exactly the relation of father to children means, I don't think there's any moment in it that can be posited as the moment that somehow defines what that relationship is.  It has to be lived out and of course, it will be lived out in somewhat different ways, but I don't think I can suppose that a certain moment when I had my dignity, such as it is, fully in hand, in relation to my children is necessarily the moment that can be determinative, or defining moment for my relation with them.  It will have to be lived out and I actually think you're right.  I think it is often harder for the child to come to terms with that than it actually, than it is for the parent, but once again, that's the course of human life and we need to learn it as best we can.

DR. LAWLER:  I agree completely with Gil here and completely with you in this sense.  I agree that I would not want my child to think even for a moment that it would be better if I were dead.  But I also know it's a shortcoming that I think that, because there's an element of wanting more control over things than you can really have.

As if I would want to live my own life as if for not one moment I would ever think I would be better if I'm dead, but in fact, I don't have that much control over things either.  So let's say our impulse is perfectly natural and sort of a shortcoming we share and then finally Gil is right on this.  We're stuck with life not being that neat.

DR. SCHAUB:  In saying that you would never want your child to have the thought that Dad would be better off gone, doesn't that drive you then to have to say that you will have to take it upon yourself to decide when you would be better off gone?  In other words, doesn't it -- I mean you going in the home isn't going to prevent them from having that thought.  The only -- the only serious thing you could do would be at a certain point, I mean the story Janet tells about some cultures where the elders just disappear at certain moments.  They reach a certain age and they go, some Native American cultures, they go into the woods and disappear.

Wouldn't you have to push it to that?

CHAIRMAN KASS: That is a fair and challenging point.  I guess I'd have to also accept Peter's admonition and it's also at the heart of Gil's own teaching on this.  The limitations of the illusion of control and the ability to master all of these things.

True, we can't control for the contingencies.  On the other hand, we're also not simply reeds that blow in the wind and by arranging things one way, rather than another way, we increase the likelihood of this rather than that, admittedly with imperfect control and with a certain humility.

It's not quite responsive. 

DR. FOSTER:  Let me -- I said I wasn't going to say anything more today, but I guarantee you in real experience that there oftentimes comes a wish out of the love for a parent that death would come.  You will continue, if there is no me left, I mean, aware of nothing, we'll take care of trying to keep the subcutaneous ulcers, things and so forth, but it would be inhumane not to say I wish my mother could go home.  You're not going to kill her.  You're not going to withdraw anything.  You'll do everything there is to do, but there are many times, not for your sake, but for her sake that you wish that the time for death would come.  Now you can't plan for death, you know.  I always say, "life is until further notice."  I mean it's interim.  But you can't plan these things.  I guarantee you -- well, I can't guarantee anything, but I have seen this hundreds of time.  I felt this for my own mother who was in the last three years of her life, knew nothing.  We cared for her -- she was cared for at home.  She died in her own bed.  But there was no mother left there.  There was just a body left which we tried to care for, treated and so forth and so on.  But you long for, you prayed for the release from this which is not life, but extended death. 

So please don't assume that it's something wrong if a child says at some point where there's really no you left, it's like keeping a corpse in a mausoleum, you know, so we go visit Chiang Kai Shek.  It was in the paper this morning, whether they're going to finally bury him or not, you know, and so forth.  It's like a mausoleum that you're doing there.

So it's not evil for a child or a failure of love for a child or a failure of anybody in the family to not wish for the loved one to not have to just be there for a while.

CHAIRMAN KASS: Thank you very much and I partly misspoke.  This is a correction.  Surely when people we care about die after long misery, we feel on their behalf a sense of relief and we're able to say I think without hypocrisy, thank goodness their ordeal is ended.

But what one doesn't want is for the child to come to resent the existence of the parents, not for the parents' sake, but for their own.  And that, I think, is a very different kind of matter.  And one tempts the children with that if the ordeal seems senseless and interminable.  I'm not praising it.  I'm not praising such a sentiment, but human nature being what it is, it occurs.  And it's not a kind of -- one would like to avoid having a child look himself in the face and say, I really wish this would end for me, not just for them.  But I take your point completely.

Paul -- Charles, to this?

DR. KRAUTHAMMER:  To this, yes.  I would just make one point.  I'm with Dan on this.  I wouldn't romanticize the uplift of care-giving and I wouldn't as a parent impose heroism on a child which I think is what's involved here.


DR. McHUGH:  Once again, I don't know how to enter -- join up -- but I have to say I'm beginning to move away from you all a little bit, primarily because in the process of talking about how tough all this is, you're talking about the stuff that I do almost all the time, every day.

We wrote a book, after all, that became a best seller on Alzheimer's care called The 36 Hour Day because it is -- but it became a best seller because lots of people wanted to buy it because they wanted to do it and they come to doctors often, like Dan and me and others saying come on, it's awful and it's happened to you, but I want your help to do what I can to accomplish what's in front of me.  I'm also -- so that's one thing.  There are deep ambivalences and we shouldn't be surprised by deep ambivalences in human kindness, that's part of our nature.

The other thing I'm just a little uncertain about is this gradual kind of sense that maybe we're expending a lot of resources on these people and they're not as likely to be as contributing themselves and rich and flowering as other people are, particularly young people.  If we extend that, although I don't like the mountaineering metaphor of the slippery slope, I'm beginning to see its meaning here.  Because after all, it won't be long before if you've followed that too long, you'd be saying well, gee, you know, well is everybody contributing at one level and maybe we ought to judge everybody according to the economics of it.

I'm a doctor and I work as a doctor primarily for my patient and my patient is what is in front of me and my job is to make sure that I stick up for him or her as long as I can and that I shouldn't be taking -- I'll let other people, let the economists and other people take into account what this is costing, how many -- what the percentage is, all of that.  The patient didn't come to me for that purpose.  He didn't come and say judge me in relationship to other people and decide what I'm worthy of.  He said will you take care of me and I said I would. 

And so I think these exercises, if we go too far in them, will eventually lead us to the point where we don't acknowledge these commitments to each other and that ultimately have very professional responsibilities and could have very bad damages to the society if control and contributions are the only things that get weighed in the balance.

CHAIRMAN KASS: Let me ask Gil if he wants the last word and then we'll break.

PROF. SANDEL:  You don't really mean a last word.

PROF. MEILAENDER:  Is the chair going to say nothing after I'm done?

CHAIRMAN KASS:Other than to announce where we're going for dinner, yes.

PROF. MEILAENDER:  I would just say in connection with sort of the larger project, if we have a project, that we are embarked upon, that the relevance of this discussion, if it has any relevance is in sort of terms that came out in the previous session, whether we'll think wisely and well about policy questions, unless we've learned to think in the right way about certain human relationships and what counts.

That to me, is the connection that will be most likely to make wise judgments about how to deal with overwhelming policy problems if we've freed ourselves of certain illusions, if we've come to think of human life in the proper way and so forth.  I say that without presuming that the way I've described it is the proper way.  I'm simply saying that that's the relevance of the question, it seems to me and why it makes a difference for what we're doing.

CHAIRMAN KASS: Thank you.  I do think that it's very unusual in the discussion of this problem ever to take up the question of what the impending old owe to the others.  We generally look upon it one way and it seems to me an important piece of the discussion is to change the perspective and Gil's very provocative paper enables us to do that in the small and I would certainly underscore his last comment that thinking about it in concrete, personal, familial terms is a perspective that can't be lost sight of if we mean to think sensibly about the larger policy questions, so I do think this is at least a contribution to understanding the diagnosis, to understanding our current situation.

Those of us who are meeting for dinner, could I be reminded of the time, is it 6:30 for drinks.  We're meeting at the Hilton Hotel which is -- we've eaten there before.  It's a few blocks down south, I guess.  Yes.  Sort of in the direction of the Metro, walking distance from here.

People who want to walk over there, we can meet in the lobby about 6:25 and walk.  We meet tomorrow morning at 8:30 for a discussion of the paper on the care-giver's dilemma, what happens when patients with dementia have supervening medical problems.  And then the last session we'll have a guest, Professor Burt on public policy questions.  But we're adjourned.

(Whereupon, at 5:15 p.m., the meeting was concluded.)

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