FRIDAY, September 10, 2004
Session 6: Aging and Society: Perspectives on Policy
Robert A. Burt, J.D., Alexander M. Bickel Professor of Law,
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
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
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
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
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
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
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
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
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
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,
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
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
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
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
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
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
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
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
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
And here I find another demonstration of the vulnerability of
the communal ethos even at the moment that Medicare itself was
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
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
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
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
"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
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
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
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
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
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
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
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,
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
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
CHAIRMAN KASS: Rebecca.
PROF. DRESSER: Well, here's another huge area for
you to address. I think you did a beautiful job of responding
to this unreasonable request in the letter. So thank you.
I liked the point you made about reimbursement for conversation
in the medical setting between doctors and patients and families.
I wonder if you've given any thought to the process at the
larger level, whether it's a government policy deliberation
or deliberation such as ours or in a community, even in a voluntary
association, I suppose, about how to work through these different
questions, different proposals in a group where people have very
different ideas about what is the right thing to do from issues
such as universal health insurance to when to pull the plug.
I see that as part of the reason we have all of these problems
today. That is, we have a very difficult time talking among each
other in this pluralistic society and reaching some common policies
and some agreed upon rules.
So I wonder if you could apply your wisdom to that particular
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
DR. GÓMEZ-LOBO: Yeah, I think mine is an easy
one in a way. I was thinking about the notion of risk pool and
the idea of having the broadest possible risk pool, and where
I would need some illumination, I think, is whether this might
restore some sense of avoidance of the fight over limited resources.
Maybe I'll tell you something that some of us have been
worried about here, namely, Janet's insistence of the fact
that we may be investing a lot of resources in the elderly and
those would be resources that don't go to the young.
Now, what worries me about that is that we may lose a sense
of equality, for instance, if we refuse to treat, say, people
of a certain age. I was a little bit worried about what Dan said
a minute ago, what happened in Britain, and the reason why I'm
worried is I ask myself, well, those people were not going to
get dialysis or whatever it is. I wonder what the cost of that
is, say, compared to the amount of money the U.K. is spending
in military hardware.
Because of course, the question of allocating resources and
denying them from people in certain categories is a function of
the overall picture of expenditure.
And your idea seems to me very attractive in saying, well, let's
not just concentrate on the elderly. Let's concentrate on
everybody and with such a vast, vast risk pool, we may be able
to avoid some of these confrontations and age struggles.
CHAIRMAN KASS: Charles.
DR. KRAUTHAMMER: Everyone here has begun by thanking
you for your presentation. So I want to thank you particularly
for dispelling the canard that this Commission is politically
skewed to the right. I think having a single presentation that
takes a whack not only at the Rhenquist court, but also at the
central medical proposal of an incumbent President in the midst
of a reelection campaign, I think, speaks well for the ecumenism
of the Council that calls itself the President's Council.
Now, on substance, you talked about the Kitty Genovese phenomenon
writ large, the decline of solidarity. Now, that may or may not
be true, but let's assume it is, and as I understand your
proposal, you are proposing universal health insurance as a way
to approach or attack that problem.
I wonder if you're comparing this to the supposedly pristine
state of solidarity, which existed in de Tocqueville's day
and which somehow has declined in the present day or at least
has been in decline the last 50 years, it would be strange, I
would think, that this decline in solidarity according to your
understanding would occur precisely at a time in the last half
century in which we have had the most extensive government intervention
in care and caring, in the form of Social Security, Medicare,
ADA, and I think the most dramatic example is AFDC.
I think there's a very strong school o thought that in fact,
the extension of government programs, particularly federal programs
into traditional areas of caregiving and caretaking has loosened
the bonds of solidarity. The most classic example is AFDC, where
the government essentially has said if you have a child and don't
have a husband, I will act as your husband and provide the check.
And we know the disastrous effects it had on the family. So
I would say that while one could argue pro and con the national
health insurance, I think it's a serious proposal on the ground
of efficiency and other grounds.
To argue on the grounds of it strengthening the bonds of solidarity,
I would argue, would be a rather weak argument, given the fact
that we have a long history of seeing how those bonds of solidarity
in communal caring tend to be reduced when the government steps
in as a substitute.
CHAIRMAN KASS: I think that's enough. Bill, briefly.
DR. HURLBUT: I just want to ask you a simple question.
Why do you think — what is your explanation for why we have
a greater aversion to the connection of aging and death now?
You implied that, I believe.
Culturally speaking we're at an ebb or a flow. The positive
aversion is increasing, right? Wouldn't you think it would
be the opposite? I mean, old people now are more functional.
There's so much more cosmetic surgery.
What's going on?
CHAIRMAN KASS: Please, and do whatever you are comfortable
doing. You're not obliged to deal with all of this.
PROF. BURT: Not that I want to speak for 45 minutes,
but are we going to 12:30 or till 12?
CHAIRMAN KASS: Just continue.
PROF. BURT: Well, okay.
CHAIRMAN KASS: We have a public session scheduled for
now, but that may not begin before the time, but it can begin
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
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
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
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
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
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
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
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
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
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.