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FRIDAY, September 10, 2004

Session 6: Aging and Society: Perspectives on Policy

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

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

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

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

PROF. BURT:   Well, thank you, Leon.

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

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

PROF. GEORGE:  That's usual Washington fare.


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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The second cultural element, the unreliability of communal bonds as a source of mutual support and neighborly caretaking.  Again, as with the status of physicians, there's some illuminating comparative data between the 1960s and today the data is not as self-interpreting as the Roper poll that I cited regarding confidence in physicians, but it's clear enough, it seems to me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So I'll stop there.

CHAIRMAN KASS:  Thank you very much.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So just some observations and some challenges.

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

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

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

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

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

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

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

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

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

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

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

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

I have Gil, Rebecca, Alfonso and Charles.

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

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

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

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

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

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


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

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

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

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

CHAIRMAN KASS:  Still okay?

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

What's going on?

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

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

CHAIRMAN KASS:  Just continue.

PROF. BURT:   Well, okay.

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

PROF. BURT:   Okay.  This is fine.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

PROF. BURT:   Yes.

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

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

CHAIRMAN KASS:  Or it's not worth doing.

PROF. BURT:   Yes.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Member speaking from an unmicked location.)

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

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

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

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

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

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

PROF. BURT:   From fear.

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

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

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

What do you think about that?

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

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

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

  - The President's Council on Bioethics -  
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