Robert Binstock, Ph.D., Professor of Aging, Health, and Society,
School of Medicine, Case Western Reserve University
Thomas R. Cole, Ph.D., Painter Distinguished Professor and
Graduate Program Director, Institute for the Medical Humanities,
University of Texas Medical Branch, Galveston
CHAIRMAN KASS: It's entirely by coincidence,
I'm sure, that we meet again for the second time in the Ronald
Reagan Center to discuss ethical and social issues connected with
Alzheimer's Disease and dementia. The people who planned
both of things, I'm fairly sure, had no advance knowledge
of President's Reagan's recent death. And whatever else
one wants to say about his legacy as a public figure, certainly
more than a small footnote to his life will be the letter that
he wrote to the American people in 1994, 10 years ago, it's
hard to believe that it was that long ago, which more than any
other single event I think brought Alzheimer's Disease out
of the closet and into the national consciousness.
Lots of people knew about this, lots of people were in denial.
But for this beloved man to speak so candidly about this, I think
made a large difference and the climate seems to have changed,
at least for serious attention not only to the science of the
subject but also to the way we begin to think about it.
Dementia, like disability, decline and death, are depressing
subjects not only to those who are afflicted with it or those
who care for them, but, one would also add, to us the apparently
healthy who prefer not to be reminded most of the time of our
finitude and of the various blows that fate has unavoidably in
store for us.
Our denial is, in fact, increased by the quiet belief that with
the aid of science we can overcome or at least greatly moderate
our fate. Yet, ironically, as a result of previous successes
of science and medicine more and more of us are living to encounter
the chronic and especially mind-destroying diseases of old age.
We now have, as everybody knows, between 4 and 5 million American
afflicted with Alzheimer's Disease and the predictions are
that as the baby boomers come into their old age, this number
may perhaps even triple by mid-century.
The challenge for the society is how to think about the dilemmas
of an aging society with an increasing number of people living
into their old age, many of them in greatly diminished conditions,
at least until science does more of what it promises to do. In
an age also where family structure is not what it used to be and
the burdens on the caregivers are at least as great, if not greater
than the burdens on the afflicted.
This Council has decided at least to try to explore this topic—
the ethical and social implications of dementia, especially Alzheimer's
Disease— not because we think that it is the sexiest of
topics. It is a topic of everyday ethics. It is a topic of immense
social importance.
Last time we put our toe in the water with a discussion of the
concept of the demented person and had a discussion about the
subject of identity. We also had a discussion of advanced directives
and the questions surrounding the adequacy of trying in advance
to lay out what people want to be done when they become incapacitated.
We might return to some of those more focused problems in subsequent
meetings. But as a result of the last meeting, the staff and
I thought what we really needed was to set the stage for any further
more focused studies in this area. And that means learning something
about the story of our aging society, to learn something more
about Alzheimer's Disease and to learn something more about
the tasks of giving care for people with dementia and other severe
disabilities. And as a result we have planned a day devoted entirely
to this subject.
The opening session is not about dementia in particular, but
is about aging and society: social-scientific and humanistic
perspectives. And we're really very privileged to have two
of America's most distinguished students of this subject.
Robert Binstock, who is Professor of Aging, Health and Society
at the School of Medicine, Case Western Reserve University, is
a political scientist by training, but who has been in this business,
I think, for close to 40 years. I won't rehearse things in
the bibliography, but he has been on top of almost every aspect
of this subject. And he will speak to us first giving us something
of a social-scientific perspective on the subject.
And he'll be followed by Professor Thomas Cole, who is a
Distinguished Professor and Graduate Program Director at the Institute
for Medical Humanities, the University of Texas Medical Branch,
Galveston. Professor Cole is one of the country's leading
humanists writing on this subject. His The Journey of Life,
from which we have read some selections this time, is really quite
extraordinary.
And welcome to you both. We are really very pleased that you
are willing and able to be with us this morning.
I think we'll simply let you go in order and reserve discussion
for the end, unless there are some points of clarification in
between that people would like to raise.
Professor Binstock, please and welcome.
PROF. BINSTOCK: Thank you very much.
I am honored to be here and to be invited to be here, and to
be present with you.
The task set for me is a bit daunting in the sense that if you're
talking about the aging society, you're talking about every
dimension of human life. When you cut things by age, you encompass
all aspects of human life and the variations among people.
And the challenge is reflected in my choice of a very narrow
reading for you, because I really couldn't think of anything
that was specifically written to provide a broad overview that
was up to date and focused on the things that, perhaps, I thought
you might to hear. So I just gave you the short piece so you
wouldn't have much agony and we can have a good discussion
about a wide range of things.
You're all aware that the percent of the U.S. population
that's 65 or older, and I'll generally be using 65 or
older, has increased extraordinarily over time. And you'll
see that by 2030 or so when the baby boom is all on-line as older
people, that fully 20 percent of our population will be 65 an
older.
A simple way to grasp this in terms of impact is that today
there's only one state, Florida, that has a population in
which 18 percent are people 65 and older. But in 2025 roughly
four-fifths of the states will have that. And largely, if you
think it through, the ones that will not have that large proportion
of older people are states where there are a lot of immigrants.
Now, part of this increase in proportion is due to, naturally,
declines in infant mortality early in the last century and before
that, but an even bigger factor has been a long term decline in
U.S. fertility rates, with one exception, and we'll see now
if I can manage the laser pointer, right there, which is the baby
boom. Seventy-six million Americans born between 1946 and 1964.
And so with the baby boom coming on line if you'll look
at the absolute numbers, you'll see that the aged population
will double from 35 million today to 70 million in 2030 when all
baby boomers will be in the ranks of old age.
Now as always with baby boomers, they have implications for
most sectors of society, even as they did when they entered grade
school and a lot of schools had to be built awful fast. And so
one of them is, of course, that the number of older consumers
will double. It'll be a big market out there.
Another is that the demand for health care including long term
care, will be much greater than it is today. And I should mention,
there's an enormous shortage of nurses and nursing aides even
today. One report out two years ago suggested that together we
probably could use about 500,000 more nurses and nursing aides,
including all the long term care needs.
There'll be an increased number of older workers. One study
out of Cornell suggests that about 33 percent of baby boomers
will say they want to work full time continuing well past 65.
And an AARP study said 85 percent want at least part time work.
The housing market could become depressed through over supply
in the future as baby boomer's start to downsize by selling their
houses and put a glut on the market.
And there'll be an increase in the number and percentage
of older voters. And I'll go into this in a little depth.
And when I notice that nearly a third of the Council members are
political scientists, although Jim Wilson is not here today, I
thought you might be somewhat interested in this in more depth.
You'll see that the percentage of people of voting age will
reach about 27 percent, that is, percent who are old of those
eligible to vote will reach about 27 percent in 2035. And the
import of that is magnified by the fact that older people cast
a larger percentage of the votes than they are as a percentage
of the voting age population. That's because they turn out
at a higher rate; this has been a long term trend. And actually,
other age groups even as cohorts change, have declined in their
turnout rates.
If one uses a couple of extrapolation models, which of course
is a very unreliable mode of prediction, and you look at the likely
percentage of votes that could be cast by older persons in 2035,
about a third of all votes. And another model you can see it
getting up to 41 percent, about there.
Now there are some who have had apocalyptic concerns about this,
such as Lester Thurow, who has written that democracy will meet
its ultimate test in the aged and that class warfare will not
be between the rich and the poor, but between the young and the
old. Just a few comments on that.
One of them is that older persons to date have not shown any
tendency to vote cohesively. In fact, they distribute their votes
among candidates in the same proportions as people in other age
groups do, except for the youngest age group which always deviates
from the strata above them. And that figures in terms of not
having standing partisan attachments which have strengthened over
time and so forth.
Nonetheless, even though the business about Social Security
is the third rail of politics, this journalistic cliche, touch
it and you're dead. You know, that's never happened.
And if you want in questions later, I can show you an example
involving Ronald Reagan.
Nonetheless, there is an impact because of this latent constituency
that no one in Congress wants to offend, okay. And so as a consequence,
old age policies have stayed very much on the agenda, probably
will stay very much on the agenda in the future even though there
isn't this voting effect. But it's the fear.
There's a great book called The Logic of Congressional
Action by Doug Arnold which explains how you don't want
to get caught out on a limb and portrayed as being anti-old when
you're running for reelection.
In any event, we can talk about that more later if you're
interested.
Now, from 1935 to the late seventies we constructed an old age
welfare state in this country starting with Social Security and
then through Medicare and a great many programs, and the result
is that today about a third of our annual federal budget goes
to programs benefiting older persons. Still, even with that,
economic, health and health care problems of a substantial nature
remain.
Now Social Security has reduced old age poverty from about 30
percent in 1960 to about 10 percent today. But some 3.6 million
older persons are still in poverty. And I want to stress to you
what a harsh measurement the poverty line is by looking at the
budget of an elder couple that is at the poverty line, which is
about $10,700.
According to the government's assumptions, which are one-third
of the budget for food, one-third for housing and one-third for
everything else, here's what that amounts o: $34 week each
for food and $297 a month for shelter and, again, for everything
else, which of course means furniture, utilities, clothing, transportation,
you know, plus toilet paper— everything including out-of-pocket
medical and dental expenses which average over $300 a month for
older people although for poorer older people they would be less
than that. But at least that gives you a rough idea.
And I should point out that roughly two-fifths of the elderly
are under 200 percent of the poverty line. So when we say that
only about 10 percent of the elderly are in poverty, be mindful
that, you know, you get up to about 40 percent of the elderly
and they're not much better off than that. So they've
got an income of $20,000 and you can double that budget and so
on.
The reading I gave, a study that AARP did, suggests some future
improvement for baby boomers, through a DYNASIM methodology.
But this assumes that Social Security is sustained in its present
form. And, in fact, Social Security is the major source of income
for poorer older persons.
For the lowest income quintile of the elderly, 81 percent of
income is provided by Social Security and another 10 percent by
public assistance. So you can see that maintaining Social Security
at its present level is very important for the income structure
in the future.
Now, what are the challenges of sustaining Social Security in
our aging society? After all, we're going to move into a
point where the number of beneficiaries will have doubled by 2035
unless we change the rules, okay.
Well, according to a CBO report released just this month, which
is a bit more optimistic than the trustees of the Social Security
funds report early in the year, we'll need to begin drawing
on the Social Security Trust Fund in 2019.
The Social Security Trust Fund right now has a surplus of nearing
$2 billion -excuse me, $2 trillion. You know, the old Everett
Dirksen line. $2 trillion. And it'll be well over $3 trillion
by the time we're talking about.
Now, by drawing on it this simply means that the payroll tax
revenue plus the taxes on Social Security income for upper income
people, which is dedicated to go into the trust fund, won't
be adequate to pay benefits starting in 2019. So we'll drawing
on this reserve, which has accumulated over the years because
of some reforms that took place in 1983 in a big package which
overtaxed the payroll tax, basically.
In 2052 the trust fund will be exhausted and only 80 percent
of benefits can be paid. But the problems of sustaining us to
2052, which seems way off, are really more difficult than simply
drawing on the trust fund because the trust fund consists of a
stack of IOUs, U.S. bonds. As soon as the money comes in and
becomes a surplus, by law it must be invested in U.S. bonds, which
are paying about two to three percent interest when the government
borrows from itself. And then, of course, then that money goes
on to be spent for all sorts of other things; anything that the
government wants to spend out of general revenue.
And so in order start drawing on the trust fund we have to convert
it into cash, which means we're going to have sell bonds on
the open market at a much higher rate than we've been selling
them to ourselves. Okay. And I'm sure many of you are aware
that our debt is growing and growing and in the hands of people
in foreign nations. For example, I read recently that about 40
percent of our debt is held by Japan and China together, just
today. And, of course, there is the issue with deficits. We don't
know whether there will be deficits or surpluses down the line.
But, you know, faith in buying U.S. may decline geopolitically
or for strategic purposes from other nations.
Now, turning to Medicare, that's enabled tens of millions
of older persons to have health care who otherwise wouldn't
have had it. The impact of this can be seen in this slide where,
if you'll notice that if we look at the uninsured, people
65 and older less than one percent. On the other hand if you
didn't have Medicare, according to my back of the envelope
calculations, it would look something like this in terms of who
would lack health insurance. Because there are lots of problems
for getting health insurance if you're old in the public sector.
And I've sort of noted those at the bottom of the slide.
Under a "middle cost" scenario, Medicare will grow
from 2.4 percent of GDP today until well over 8 percent in 2050.
And that's just a guess, like all these projections. But one
thing that can be said clearly is that sustaining Medicare is
a much more difficult challenge than sustaining Social Security.
In the case of Social Security you're talking about doubling
the number of beneficiaries, you've got specified benefits.
In the case of Medicare you don't have specified benefits.
What you have is an obligation, at least under present law, to
pay the health care bills of the people out there who are covered
by Medicare, which is about 41 million people, 90 percent of them
older people.
And the big challenge will not be the aging of the population.
In fact, Uwe Reinhart had an excellent article in Health Affairs
in December showing once again that population aging does not
drive health costs; it's a pretty minor factor. What drives
them is the discovery and implementation of new technology; it
tends to be very expensive. And the thing about it is that when
we implement new technology, we don't stop the related old
technology. Take the case of noninvasive imaging. You know,
we started out with the x-ray and we got the CAT scan and the
MRI and the PET scan, the DOG scan. And you can be sure, you
know, you can do anyone of those in a space of a couple of months
as a patient, depending on what you're undergoing or what's
being diagnosed. And when we get to new scans, all these other
things will still be used.
So that's the central problem. That's been brilliantly
pointed out by a lot of people, including the economist David
Cutler at Harvard.
Now despite the present access through Medicare, there are a
lot of health and health care problems that remain. Leon has
already mentioned the prevalence of Alzheimer's Disease at
about 4.5 million today. Could be as much as 16 million by 2050
according to the Alzheimer's Association, which of course
has a bit of an incentive to boost the number of people likely
to be affected in order to back up their cause of getting research
to deal with this effectively.
The costs of Alzheimer's Disease just through Medicare and
Medicaid totaled $50 billion in 2000 and it is projected to be
$72 billion just in 2010. The cost of Alzheimer's Disease
to business, according to a study done by the Alzheimer's
Association, was $61 billion 2002.
Most older persons have at least one chronic illness, and many
have multiple chronic illnesses. In fact, it's more common
to have co-morbidities, as they're called, then to have just
a single condition.
And here are the most frequent chronic conditions of older persons.
You'll see that arthritis, actually, tops the list. Alzheimer's
doesn't quite make it. It would be not too far below the
diabetes there. But you'll see it's high blood pressure,
hearing impairments, heart disease, orthopedic impairments, cataracts,
sinusitis and diabetes.
These chronic conditions, as I said, are often multiple for
any given individual, lead to disability and dependency in activities
of daily living. You'll see that the percent of older persons
with disabilities and dependency increases substantially by older
ages within the old age group, the right hand brown bars being
of course the 80-plus group. So you can see in the "needing
assistance" area over in the right we're talking about
over 30 percent, really about 35 percent of people 80 and older
needing assistance. Now, what does that mean: Needing assistance?
Well, there are several levels of this. One is customarily
called "assistance in activities of daily living" (ADL).
And these are very basic activities of daily living. As you can
see, eating, getting in and out of bed, getting around inside
the home, dressing, bathing and toileting.
Then there are "instrumental activities of daily living"
(IADL) which are not as fundamental, but actually are essentially
for being able to live independently. So this is not being able
to do housework, laundry, prepare meals, grocery shop, travel
outside the home, manage your money or use a telephone. These
are typical of those.
And then, of course, there are those who may not have the above,
but who require 24 hour supervision. That's usually a person
with Alzheimer's Disease who may cause safety problems to
themselves, may not remember to eat, etcetera, etcetera, etcetera.
The residential distribution of dependent older persons, about
1.6 million. 4.5 percent are in nursing homes. About 4.3 million,
12 percent, are in the community who are dependent in activities
of daily living. And then about 1.4 million in the community
who are dependent in IADLs only. Have no problems with ADLs,
but nonetheless can't manage their lives independently.
Now, over the past several decades there has been a trend of
slight decline in disability in the older population, and that's
sometimes optimistically cited. It is a good optimistic trend.
But the problem is with the aging of the baby boom in the next
several decades, there's going to be a massive increase in
the absolute number of disabled older persons and the cost of
their care. So the decline in the rate of disability and dependency
doesn't eliminate that problem.
And here you see it reflected in estimated costs by the Congressional
Budget Office. In 2000, $123 billion spent on long term care
services, and they're projecting that by 2040, that'll
almost triple $347 billion. So there's a daunting task there.
And since I see my time is going fairly well, I can add in ad
hoc without a slide that today about 80 percent of the home care
that's provided for dependent older people is provided informally
on an unpaid basis, usually by a spouse or a daughter or a daughter-in-law.
There are some men caregivers, but they're relatively rare.
And as we look to the future that may be difficult to sustain,
and it's become harder and harder for that level to be sustained
simply because the percentage of adult middle-aged women who might
be caring for their parents who are in the labor force has increased
tremendously. I have a slide on that in my reservoir of things
for the question period, but I believe it runs since about 1960
from about 40 percent in the labor force to over 60 percent in
the labor force today, and the trend keeps going up as far as
that goes.
It's also the problem of so-called blended and non-family;
that is to say we have had sustained periods of high rates of
divorce and remarriage. And the issue of whose mother-in-law is
whose, you know, becomes a little confusing over time and where
does the obligation fit in... for caregiving and so on.
Well, moving along now so I don't take too long, the dilemmas
of financing long term care are tremendous. The average private
pay annual cost of a nursing home today is about $60,000 and some
of them run as high as $140,000. I'm not sure how much added
value you get with each $10,000, but that's a whole subject
of discussion.
Medicaid pays for about 35 percent of long term care for the
aged, but all signs indicate that there'll be no growth and
perhaps cuts in Medicaid both at the federal and state level in
the year immediately ahead. In fact, like this year in many states.
So that's not a good sign.
Meanwhile, there are a lot of people who shelter their assets
in order to become eligible for Medicaid. As I'm sure you
know, in order to qualify for Medicaid you have to have an extremely
low income and negligible assets — about $2,000. And if
you do qualify for Medicaid, Medicaid will pay the difference
between what you can pay maybe through your Social Security check
and the rate that the state approved for Medicaid in that state.
And basically you have your long term care for free.
So there are a lot of peopl, in anticipation of this, and how
many is not known, who consult Medicaid estate planning lawyers,
as they call themselves, to shelter their assets in various ways
through various kinds of trusts and then become eligible for a
program for the poor without being poor. Although they're
technically poor, maybe in control over their assets. And that's
sort of a problem because one can see some moral and ethical aspects
to that.
Then there's private long term care insurance, which actually
very few, relatively few purchase. Perhaps 5 to 7 percent of the
elderly population pays premiums for such insurance. One of the
reasons is denial that you're going to need long term. Another
reason is that it's expensive.
You know, I've got it now and with inflation protection
of 5 percent to keep my benefit relevant, it costs about $2500
a year and it doesn't work out to be helpful in terms of a
medical deduction and so on.
One thing one could do is have a tax code reform, such as giving
you a credit for the premiums that you pay for long term care
insurance. Right now all you can do is include it as a medical
deduction. And I can tell you as someone who has a lot of major
operations if you have any insurance at all, you will never qualify
for a medical deduction. It has to be what's in excess of
7 percent of your adjusted gross income. But you could do that.
And then of course there's the possibility of raising taxes,
which may be coming the future, in which we could expand public
support for long term care, not only through Medicaid but through
other mechanisms. Certainly this was considered a lot in the
late '80s and in the early '90s. And actually was part
of President Clinton's Health Reform. Of course, there's
an issue there, which is why should I pay taxes so somebody else
can avoid spending down their assets and providing an inheritance
for their children? Why should I be paying for somebody else's
inheritance, which is in effect what did happen.
So finally in conclusion, there are plenty of other things one
could talk about, but I sort of considered what are the most important
issues for a national bioethics council in particular regarding
the aging society, and I picked out two as priorities.
One is the issue of old aged-based health care rationing. This
has been proposed by some, including Dan Callahan, for nearly
20 years, saying we can't afford the health care of older
people, and of course he had a lot of philosophical reasons for
this, too. And he proposed that Medicare not pay for lifesaving
care, as he called it - well, actually, he called it "life
extending care," to be accurate - for anyone who is 80 or
older, saying he used that as an age to approximate when one had
lived out a natural biographical lifespan.
This issue has stayed alive, it's going to become more and
more part of the public discourse, I believe, as Medicare expenditures
continue to rise at a rate that's well above health care expenditures
in general. And, frankly, you notice I didn't talk about
any solutions for Medicare. I don't know anyone who has a
solution to Medicare in the policy world at this point; what to
do about it in the long run and how to sustain it.
The other issue is whether or not aggressive medical treatment
should take place for persons who are afflicted by Alzheimer's
Disease. You know, the best way I can express it is this: My
mother for several years got to the point where she didn't
recognize me. You know, but it happened gradually and so it was
not a shock to me. But what happened whenever I visited her,
was that every ten minutes she would say "Now, who are you?"
And I would say "I'm your son Bob." And she said,
"You are?" And she would be all delighted. And ten
minutes later she would ask me the same thing, and she'd be
delighted all over again. I didn't think ever think I could
please a woman, you know, over and over again like that.
On the other hand, it got to the point where her physician called
me up. She was in a nursing home, of course. And said after some
years of transferring her to the hospital for blood transfusions.
She had some GI problem and he said to me at one point, "It's
not worth diagnosing because we're not going to rip her open
anyway to find out what it is or deal with it, rather, even if
we found out." She was now in late 90s. And he said to
me at one point, "You know, given where she's at now,"
it was more than the blood, "I'm thinking of not transferring
her to the hospital and try to give her the best care I can in
the nursing home." So that's putting it on me at that
point, and these are the kinds of issues — whether feeding
tubes or less than that — which issues you guys should wrestle
with. How aggressively does one treat people with Alzheimer's
Disease? What are the domains of professional responsibility there,
family responsibility and so forth.
So, I don't want to take up anymore time, but later I'll
be glad to answer any questions. As I implied, I have a reservoir
of about 15 additional slides here which I can bring up to maybe
respond to your questions.
Thank you.
CHAIRMAN KASS: Thank you very much.
Unless someone has a pressing question of clarification, I'd
like to suggest we go on to Thomas Cole's presentation.
(View Prof. Cole's presentation
in Acrobat Reader)
PROF. COLE: Thank you very much for the honor
of inviting me and allowing me to participate.
I'd like to talk with you basically about what I think is
the central question of humanistic gerontology. It's a problem
that I've been wrestling with since I was 4 or 5 years old,
actually, for autobiographical reasons. But it's really,
"what does it mean to grow old?"
I think this question really has no single or universal answer,
and certainly it doesn't have one that finite historical beings
can provide. Really the question itself is abstracted from other
innumerable questions that arise in historically and culturally
specific forms.
For example, what is a good old age? Is there anything important
to be done after children are raised and careers are completed?
Is old age the fulfillment of life or is it a second childishness?
What are the possibilities of flourishing in old age? How do
we bear decline of body and mind? What kind of elders do we want
to be? What are the paths to wisdom? What are the virtues and
vices of the elderly, something that Bill May has written eloquently
about. What kind of support and care does society owe its frail
and broken elders? And what of the obligations of the old, a
question which I think is much overlooked and quite important.
To think coherently about these questions, at my own peril,
I think I have to disagree with the Council's definition of
aging as it appears, at least in Chapter Four, "Ageless Bodies,"
of the Beyond Therapy volume. In that chapter the Council
chooses to use the term "aging" synonymously with the
term "senescence." "Aging," the Council writes,
"therefore" because of the way it's being used synonymously,
"denotes the gradual and progressive decline of various functions
over time, beginning in early adulthood, leading to decreasing
health, vigor and well-being, increasing vulnerability to disease,
and increased likelihood of death." I believe that is an
incomplete and misleading definition. Despite my disagreement,
however, I think my reflections are very much in keeping with
the spirit of the Council's deliberations, especially the
transcripts that I read through of your April 2nd meeting on dementia
and personhood.
So my goal here is not really to try to suggest a single correct
definition of aging, although I do think that any adequate definition
must do justice to what Gil Meilaender calls the fact that we
are embodied spirits and inspirited bodies. But I speak really
as a philosophically minded cultural historian and medical humanist.
And what I'm going to try to do is basically three things.
First, I want to point out the conceptual limitations of this
definition. Then I want to suggest an historical account of how
it has come to dominate and I think distort our thinking about
aging. And finally suggest just briefly that we need to cultivate
much more existentially and socially nourishing meanings and practices
of aging.
To identify aging with senescence, of course, is perfectly acceptable
for biological aging. It allows us to get on with the business
of scientific research and improvement of health. But it is, nevertheless,
a terribly impoverished definition because it ignores the human
experience of senescence, the constitutive role of human relationships,and
social structures as well as the beliefs, feelings, images, attitudes
and ideas that irreducibly shape the reality of aging.
Human beings are self-interpreting creatures. We are spiritual
animals who need love and meaning no less than food, clothing,
shelter and health care. Aging, therefore, cannot be defined
as if biological changes are the underlying truth upon which are
constructed psychological, social, political and cultural responses.
Biological aging is certainly real, but it does not exist in some
natural realm independently of the ideals, images and social practices,
including science, that conceptualize and represent it.
Now, this may seem like an obvious point to some of you, it
may seem wrong headed to others or it may seem just merely a quibble,
irrelevant to many of the hard ethical questions about research,
policy, biotechnology and clinical care that directly effect the
lives of millions of older people. But my view is that the conflation
of aging with senescence is so pervasive that it silently undermines
human flourishing in later life, even as it narrows the existential
ground for thinking about ethical and spiritual issues in the
fields of gerontology and geriatrics.
Moreover, this conflation grows out of a specific cultural history
which reveals a great deal, I think, about the peculiar pathos
of aging in America. This is I think connected to the pathos
of denial that many of us have been just hearing about.
So I want to offe, based on some of my earlier work, some reflections,
philosophical historical reflections on the meaning of aging,
first in northern European culture and then in American culture.
And I'm referring, of course, to the dominant northern European
and American cultures, not to the multiple cultures that have
emerged and co-exist with the dominant culture.
So I begin with the idea that culture provides the unarticulated
background understandings and the daily habits of dress, bodily
comportment, sanctioned activities within which and against which
people live their lives. Charles Taylor has pointed this out
eloquently in an essay about 10 years ago called "Two Theories
of Modernity."
Culture shapes the experience of meaning; that is the lived
perceptions of coherence, sense or significance in later life.
And culture sometimes leaves us vulnerable to the experience of
meaninglessness. Every culture attempts to meet the existential
needs of its elders by drawing on its core beliefs and values
to construct ideals of aging, ideals of old age and its place
within the cycle of human life. Myth, metaphor and other forms
of symbolic language shape these ideals and, in part, give meaning
to old age conveyed in the dominant social opportunities that
are available to older people.
An ideal old age legitimatizes roles and norms appropriate to
the last stage of life and it provides sanctions and incentives
for living with the flow of time rather than trying to stem the
flow of time, which is the experience of so many of us in this
society dominated by the traumatic fear of aging.
I think, conceptually, ideals of aging are carved out of three
basic dimensions of meaning: The cosmic dimension, the social
dimension, and the individual dimension. Each culture fashions
its own ideals of aging from all three sources of meaning, prioritizing
and blending these in the light of its own history, social structure
and belief system. So to oversimplify for heuristic purposes,
I think that the historical evolution of western ideals can be
divided into three periods, and historically they would move from
top to bottom in this slide.
Classical and Christian ideals that gave pride of place to the
cosmic dimension of meaning and they aimed at transcendence through
philosophical or religious means.
Enlightenment and Victorian ideals based on the priority of
social meaning which aimed at the rewards both sacred and secular—
of living a life of middle class morality.
And finally, our modern scientific ideals of aging that are
based on the priority of individual meaning which aim at the goal
of health through the methods of science and medicine.
Or to put it another way, from antiquity to the 18th century
ideals of transcendence taught that the goal of aging was to bring
one's self into alignment with the order of the cosmos or
into alignment with its creator.
From the late 18th to the mid-20th century ideals of middle
class morality articulated a social behavior considered necessary
for a good old age in this life and the next. And here I have
in mind the classic bourgeois virtues of self-reliance and independence.
And since the mid-20th century ideals of normal or successful
aging have aimed at maximizing individual health and physiological
functioning through scientific research and medical management.
So we've had basically a shift in the blending of these
three elements. And we need to weigh the costs and benefits of
these shifts. So let me just briefly really show you this rather
than talk about it using some exemplary images from the History
of Life Course in the United States and in Europe, and this will
allow you to visually see what I mean.
First, take a look at this sort of cosmic map. It's a monk's
manual from the early 11th century. It consists of a theo-concentric
cosmos; God is in the middle and the four stages of life are linked
to the four seasons of the year. The stages of life are: Estes,
youth; autumnus, middle age; senectis, old age, and; puerites,
childhood. Each of these is connected to a season of the year
and to the zodiac and so on and so forth.
The idea of this really for the monk was to meditate on the
meaning of his or her place within this cosmic map.
Here is another illustration of basically the same idea. The
life cycle is represented, the four stages of life in a corner
subdivided into eight around these medallions. And Christ is in
the middle. And you can see this on a gothic cathedral window
in Paris. And the translation of the Latin is "I rule all
with equal reason." And every stage of life is equally close
and equally far away from the source of all meaning from God.
Again, we have the circular composition, in the 15th century
an anonymous woodcut, actually this is 1470. What's happening
here is this is produced in a more urban society. It's beginning
to experience the anxieties of urbanization and the marketplace.
You see the seven ages of life are displayed around the wheel
of life. And you still have this circular composition, which implies
of course continuity, immortality, ongoingness, but you also have
a situation where it takes an angel to hold the beginning and
the end of life together. Things are beginning to change. The
lifecycle will no longer be understood and represented in circular
terms.
This image from the Reich's Museum at the time of the Protestant
Reformation is an image, it's a classic momento mori. 'We
are born to die,' this skeleton figure tells the sort of man dressed
in a Roman toga. What I want you just to see primarily here is
the importance of the hourglass. The hourglass was created in
the 13th century as a means of keeping time, but in the 14th and
15th centuries it emerged in painting and iconography. And here
for the first time it appears as a representation of the amount
of time that is permitted to each individual life. Each individual
life is becoming the focus of this iconography. And the amount
of time available, the amount of precious time that's available
is one of the key elements of a new way of thinking, especially
associated with Protestantism.
Now, here is the classic image of the lifecycle in the West,
the rising and falling staircase. It really becomes the standard
western image of the lifecycle for the next 300 years and eventually
comes to dominate popular thinking in Europe and America. The
medieval circle has been broken and replaced by an image in which
the beginning and end of life do not come together. You can clearly
see the priority given to middle age by its height. The hourglass
is hard to see, but the beginning it's full and at end it's
empty. Underneath the arch is a representation of the second coming.
So as this iconography becomes more and more popular, what it's
saying to people is there are ways to comport yourself at each
stage of life, and the way you do this has an effect on your success
in this world and your eternal fate. Because we have the image
of Christ, Christ's return separating those who will be saved
from those who will be damned.
You still have in this image on the left hand side you can see
leafy trees representing spring, on the right hand side the tree
without leaves representing winter and the owl of wisdom on the
tree.
Again, this becomes a much more standard middle-aged middle
class norm that includes women increasingly. And if you took
the time to translate these Dutch passages, basically what you
would be seeing is instructions that were given to the figures
on each stage of life for how to live properly in a way that allows
people to begin to think of life as a career. This is what so
unusual and so important at the time period.
So this iconography appears during the reformation. It reflects
the Protestant sanctification of everyday life and work. Individuals
are encouraged to see their lives as careers, as an interlink
to succession of roles and behaviors. To use their brief time
on earth properly and this iconography becomes a visual and a
cognitive map of how one should envision one's life.
It also reflects a yearning for a long, healthy and stable course
of life in this world as preparation for salvation in the next.
If you note that there are ten stages; this idealized lifecycle
lasts 100 years. This certainly doesn't reflect the demographics
of the 17th and 18th centuries. It represents what people were
yearning for; long, stable, orderly life in this world as preparation
for life in the next world. And this iconography really prefigures
the emergence of the individual life course as a social institution
that become bureaucratized in the 20th century where we begin
to have age-graded institutions. As John Bowles put it —
boxes. We get shepherded into boxes of school and work and retirement.
This is prefigured in the iconography.
The British form you can begin to see the absence, really, of
nature, representations of God, representations of life.
A late 18th century French form, by this time this was no longer
art. This was just mass production. You began to see these everywhere
— plain Spanish ceramic tiles, games, German beer mugs.
These were essentially the forerunners of posters and the maps.
Jacob Grimm, in the introduction to Grimm's Fairy Tales,
talks about one of these hanging in the hallway of his home as
a child and the formative influence it had on him.
Here we see it through Currier and Ives. You can also see something
that's been present all along, which is the connection of
stages of life with particular animals. Again, there's still
some reference here to springtime as the first half of life and
winter as the second.
Now, this image comes from George Miller Beard's book called
American Nervousness published in 1880. Beard was one of
the first American neurologists and was the first person who studied
really what we think today of as the issue of productivity and
age. And what I want you to notice about this table from his
book was that it was really modeled, the rising and falling of
physiological energies that is at the heart of the traditional
iconography, but everything is stripped away and the focus is
on when people do their best work. This is, of course, something
that might be expected in a society where corporate and industrial
factories are beginning to want more and more labor out of less
and less time.
This I threw in just for the fun of it. It shows how many places
this iconography moved into. This is really from an early 20th
century greeting card. And you would note here that like Hebrew,
it reads from right to left rather than from left to right. And
the pinnacle, interestingly enough, is the Bar Mitzvah boy.
So what I really I wanted to say about this is the pervasiveness
of how it shapes our way of thinking, about the nature of life
and the way we ought to comport ourselves.
Here's another representation of the lifecycle. It's
really a graph from Erick Erikson's "Eight Ages of Man:
Childhood and Society" in 1949. Rather than think about it
as a theory, I suggest we think about it as an image. And the
image is onward and upward. It's an image of a one way street
to progress and then sudden oblivion which is beginning to become
sort of the desire, the goal of sort of dominate American culture.
Now where we see a cartoon from Saul Steinberg in 1954, who
is already critiquing the place of old people in the bureaucratized
lifecycle. And this is, of course, what people began reacting
to in the 1980s saying, you know, we need an age-irrelevant society,
that more and more we need to free ourselves from age-graded institutions.
I pulled this image from the wall of my father-in-law's
shoe store in Omaha, Nebraska, in 1979 because it represents,
I think, what the Council has called "ageless bodies."
The willow tree is a traditional symbol of immortality, and I
think increasingly what this image represents is a lack of tolerance
for decline, a lack of tolerance for the rising and falling of
physiological energies and the need to really make sense of life
as a whole.
Now, finally I want to share with you the image from the cover
of the volume in 1983 of the President's Commission for the
Study of Ethical Problems in Medicine and Biomedical and Behavioral
Research. This volume was entitled "Deciding to Forego Life-Sustaining
Treatment."
Notice the hourglass. Notice how it has become stripped away
from everything else that surrounded it traditionally in the iconography
of the lifecycle.
And just by chance, in the late '80s I was sitting next
to Joanne Lynn one day at a conference. She was the staff physician
for the President's Commission and had chosen the cover for
this. And I asked her why she picked it. And she said "Well,
what I really wanted to do was put a physician on the top cutting
a circle and putting more sand in the hourglass."
So, the point here is what this represents is this continuous
evolution towards the focus on individual health as the sort of
primary way of thinking about the meaning of aging.
So, let me just summarize what I've been talking about.
Between the 16th century and the third quarter of the 20th century
western ideas about aging underwent a fundamental transformation
and spread by the development of modern society. Ancient and medieval
understanding of aging as a mysterious part of the eternal order
of things gradually gave way to secular, scientific and individualistic
tendencies of modernity. Old age was removed from its place as
a waystation along life's spiritual journey and redefined
as a problem to be solved by science and medicine.
By the third quarter of the 20th century advances in science
and medicine along with the institutionalization of retirement
supported by the welfare state and company pensions created an
unprecedented situation: That yearning that we saw in early modern
iconography, the yearning for a long orderly and stable course
of life had become a reality for the majority of Americans. At
the same time, however, older people were moved to society's
margins and defined primarily as patients or pensioners and the
cultural dominance of science had drained many of the cosmic and
social resources which had traditionally supported the meaning
of later life.
So where does this leave us? In the early 21st century I think
we're living through a search for ideals and practices of
aging that are adequate to a society of mass longevity in a pluralist
late or post-modern culture. This search challenges us to recover
and reshape the cosmic and collective sources of meaning, to make
visible and viable the moral and spiritual dimensions of aging,
to acknowledge that existential mystery has not been eliminated
by scientific mastery.
Now, it may not be possible, but viable ideas of aging I think
must somehow find a way to negotiate between the ancient virtue
of submission to natural and social limits and the modern value
of individual development and growth for all.
Later life today is a season in search of its purposes. On the
negative side contemporary life exposes older people, as well
as the rest of us but more so I think to crises of meaning and
identity. What Anthony Giddens talks about is ontological insecurity.
In addition to the biological process of aging itself, there
are many forces in contemporary culture that undermine one's
capacity to build a solid and stable identity in later life. The
continuing forces of ageism, the economically destabilizing effects
of globalization. The dizzying speed of technological and social
change: There's a sense in which we are all Rip Van Winkles
now. And the uncertain future of the welfare state and the continuing
deep-seated fear of aging and the relentless hostility to physical
decline in our culture.
On the other hand, we're beginning to appreciate the blessings
and the possibilities of our new abundance of life, to borrow
a phrase from Rick Moody. Older people, as we know, healthier
and more numerous than ever before, are exploring boundaries of
our new map of life as they seek meaningful lives of personal
growth, social meaning and contribution, and, of course, health.
Signs of real commitment to human development in later life
are evident in many places: In the powerful movement for lifelong
learning; in the growth of community volunteering and mentoring;
in efforts to rehabilitate and retrain older workers; in the somewhat
belated theological pastoral and programmatic efforts of churches
and congregations and seminaries; in the turn to personal writing,
to narrative and storytelling among elders and health professionals
alike.
Gerontologists today document the continued capacity for creativity
and growth among sick, frail and even demented elders.
Nursing homes and assisted-living facilities are beginning to
incorporate programs that stimulate cognitive activities, playfulness,
social interaction, the preservation of memory and the recreation
of identity. Programs which appear to have positive outcomes
such as preservation of memory, relief of symptoms and reduced
morbidity.
Despite the enormous difficulties, we are witnessing the emergence
of person-centered individualized models of long term care.
Perhaps our greatest hope lies in the sheer numbers of older
people who are simultaneously pushing against the physical limits
of aging and finding ways to accommodate them. Many are discovering
that physical decline may be the occasion for social connection
and spiritual growth.
So, in conclusion, humanistic inquiry does not really answer
the question what does it mean to grow old. By offering multiple
perspectives, it encourages people to live the question and live
it deeply, and to embody the best possible answers.
A humanistic ethos above all is committed to nurturing, educating
and supporting human development, growth and well-being not only
in the increasingly healthy third age of life, but especially
amidst the frailty, disease and death that still characterized
the last quarter of life.
Thank you.
CHAIRMAN KASS: Thank you both very much for
very interesting and rich presentations.
Let me simply declare the floor open for questions and comments.
And we have until about 10:30 and if people will keep the questions
relatively short, we can all get into the discussion.
Robby George?
PROF. GEORGE: Yes. I have a question for Professor
Binstock. First, thanks for that wonderful presentation.
PROF. BINSTOCK: Thank you.
PROF. GEORGE: You put a question at the end
in two different ways, and I wondered if it refers to two different
things or practically the two different ways of saying it amount
to the same thing?
One you phrased the question how aggressively should we treat
Alzheimer's Disease and another time you framed the question
how aggressively should we treat people who have Alzheimer's
Disease. I can imagine circumstances in which they really would
be different questions, but as a practical manner for people thus
afflicted, does it come down to this?
PROF. BINSTOCK: The former was a misstatement
on my part. As far as I know, you can't treat Alzheimer's
Disease more than negligibly. So really I meant how aggressively
should we treat persons who have Alzheimer's Disease for other
medical condition.
Sorry for that.
CHAIRMAN KASS: Diana Schaub?
DR. SCHAUB: Can you say something more about
how you would answer the question that you posed about the obligations
of the old? Do you have some thoughts about it?
PROF. COLE: Thank you. That's a good
question.
I think the primary, the virtue one might think about in old
age, is the continuing commitment and care for a future that continues
beyond one's own individual life. And so obligations that
we might construct based on that idea would be obligations to
ensure a future, whether it's for one's own children,
whether it's for other communities, whether it's environment
preservation. I mean there are many, many ways of thinking about
this.
I think ideally what happens in later life is that people reach
the levels of forgiveness and gratitude; gratitude for just having
been here. And that allows them to think much more freely about
what they have to give, what they have to contribute. And so
that's I think why we're seeing so much volunteer work.
I'm not sure to what extent we might want to think about
requiring forms of community service from older people as an obligation,
say, to give back. But I do think we ought to encourage and support
in any way we can the volunteer work and the contributions of
this incredible cohort of people who have so much talent and so
many resources, the baby boom generation that we've been talking
or our contemporary elders. We've got to find ways to encourage
that contribution, those obligations.
CHAIRMAN KASS: Gil and then Janet.
PROF. MEILAENDER: Yes. I'd like to see
Professor Cole if I can get you to think just a little more to
say more what you think we need, the integration, the new you
that integrates several things because I don't know if I see
how it's possible exactly. And I'd put the point this
way, where I teach there is a group of older adults who meets
every Thursday, you know, and I sometimes I talk to them. And
when I do, I try to picture myself 10 or 20 years from now —
I think, "Do I really have to keep growing forever?"
And on the one hand, you want submission to the lifecycle and
on the other hand, you want sort of this sense that you don't
wish to lose some of the good of the focus on the individual that
you see growing out of the historical narrative you gave us. And
I don't quite see how one continues to cultivate that focus
on the individual while at the same time thinking that all of
us, you know, the fundamental task is to submit to the lifecycle.
Can you say more about how one might integrate those?
PROF. COLE: I can try.
The way I think about this is in terms of what you might call
the moral and spiritual work of aging, the ongoing efforts required,
I think, by responsible mature people to encounter realties of
limits, and through the encounters emerge with broader consciousness,
with deeper understandings.
I was just reading last night about the narrative of a nursing
home patient who is 91 years old, and I'm not going to get
this right, but basically she said, "Why shouldn't I
succumb to the realities of aging? Why shouldn't I succumb?
I just want to sit here. I can't do what I used to do."
And then she said, "When I do this, I find new capacities
coming forth. I find myself much more attuned to beauty, much
more attuned to the wonderment of being alive, to that kind of
sort of dialectic of physical decline and the growth of consciousness,
growth of spirit that I think was valued and is valued in sort
of our traditional religious commitments, but has been lost in
the one-sided attempt to master, completely master our physiological
function."
I don't know if that helps you, but it's the best I
can do.
CHAIRMAN KASS: Janet Rowley
DR. ROWLEY: Well, I have a couple of comments
and also a question.
I wonder if it isn't time that we begin to change not necessarily
the definition of aging which you were discussing, but taking
into account the fact that those of us who are older have had
the advantage of better health care and that we are in general
in much better shape when one reaches age 65 than one was a number
of years ago. And shouldn't we just change the numerics somewhat
so that you really think of people as aging and all of your statistics,
70 or 75, rather than 65, which would then really reflect the
biological changes in individuals. And that would change, again,
some of the figures. So that's one question.
And the other, and I brought this up at our last meeting, I'm
very concerned that the major ethical issue that we face in this
country is that every dollar that is spent on very old individuals
is a dollar that could be spent on young children who really are
going to benefit. And in a society of finite resources I think
it is unethical for older individuals to steal resources from
their children. And I think that that's not the way the question
is put, but in fact that is in its bluntest terms of the way society
should begin to consider this. So you raise the question of rationing.
And I know that other countries do do this, but I would be curious
as to your thought, and your thoughts also, Dr. Cole, on these
issues?
PROF. BINSTOCK: Well, they're all extremely
interesting issues. First on the use of chronological age 65
plus. You're absolutely right. It's a convention that's
used in statistics, and it's largely an artifact of that age
having been initially set by Bismark when he set up the Social
Security system in Germany, the first one. And it was picked arbitrarily,
some say, because he figured very few people would live to that
age to collect.
And some years ago, in fact, one of Leon Kass's late colleagues,
Bernice Neugarten, wrote in 1970 a very important article which
was about the young/old and the old/old in American society.
And basically she was pointing out that chronological age did
not tell you very much. That there were a lot of people in their
late 50s who resembled people in their mid-70s in terms of all
sorts of characteristics and so on and so forth.
So you're absolutely right. In fact, you know, the age of
eligibility for full Social Security benefits is gradually changing
to 67. Some people are suggesting that ought to be done with
Medicare and so on and so forth. So it's a very well taken
point.
On the question of the old stealing resources from the young
and if less were spent on the old, more would be spent on the
young, a couple of comments.
The first one is really simply that I don't think that's
the way politics works; that if you cut back on the old, there's
nothing to say it will go to the benefit of the young or to any
other cause you might want. It could go to causes you might dislike
very much. But the broader comment is this: The United States
is unique - well, let's say relatively unique among developed
nations in its lack of collective concern in its political ideology.
Our underlying political ideology is very much rooted in individualism,
the markets and so on. And so that's one of the explanations
for why we were the last of the developed countries or traditionally
developed countries to adopt the Social Security program.
We did it in 1935 in the midst of a great depression for all
sorts of reasons, which I won't digress into. And the last
European country to adopt one was like 1915. And I think that's
a reflection of the fact, and if you compare welfare systems and
so on, we don't do a great deal.
So old age became a loss leader, so to speak. We had compassionate
stereotypes of older people as frail, unable to work, deserving
and unable to do much to help themselves. And that opened the
door for this construction of an old age welfare state.
Whether we really would extend this old age welfare state to
other groups such as youth, who are much more in poverty for example
than older people, I think is problematic. And I would wind up
on that point by simply reminding you that the title of the so-called
Welfare Reform Act of 1996 was the Personal Responsibility and
Work Opportunity Reconciliation Act, to get in the Washington
jargon on it, which I think symbolizes precisely where our ideology
is. I think we had a long period of about 40 to 50 years of a
more statist approach to things and now we're moving in the
other direction.
And finally on the rationing. I'm not aware of official
policies for rationing the health care of older people. I know
that even in Denmark, maybe Rebecca can help me out on this, but
I don't think it's official there even though euthanasia is
allowed, but that's not a health care rationing policy.
I have to express an opinion. Some real concerns about the
health care rationing. First of all, I don't think it would
save much money, as various people have proposed it. Certainly
not the 80 and older thing that Dan Callahan proposed. But on
moral and ethical grounds I have a lot of problems with, and I
guess I'll just pick one, which is I think a classic case
of where the bioethical concern of the slippery slope comes into
play. Simply that if we declare one group of us as not worthy
of life saving or other health care for one reason or another,
then you really have to consider what group will be next. And
that concerns me a tremendous amount. If you just take a demographic
group and say "they are not worthy of...", what group
will be next?
DR. ROWLEY: Can I just respond? I certainly
understand the fact that because one would restrict funding, say,
in some way for older individuals that it doesn't automatically
go to youth. But if you think if a pie of health care or health
care education, when one sees the disproportionate amounts spent
in older individuals within that category, there might be more
pressure within the category to reallocate resources.
PROF. BINSTOCK: I find it interesting that
you regard it as disproportionate. You spend health care when
people are ill, and the most likely people to be ill are older
people, by far. I mean, you know to say it's disproportionate
would be analogous to saying something like school children make
up 18 percent of our population, but would you believe we spend
nearly 100 percent of our educational money on them. Well, who
else would you spend health care money on except the people who
are ill, and that's predominately older people.
CHAIRMAN KASS: Thomas, do you want to comment?
PROF. COLE: Just a couple of thoughts in response
to Dr. Rowley.
First on the issue of raising the chronological age of what
we think of as old age. AARP is now, I think, touting the idea
that 60 now is really 30. The AARP is really moving towards the
market and the needs really of the old. And the reason I mention
this is because the danger of universally sort of trying to move
the age upward, the age of what we consider bureaucratically old
age upward, is that we know that health is inversely proportional
to income. Every study I've ever seen shows this.
So that what you're going to do if you do that is people
who are poor, 40 percent of people who live at or below 200 percent
over the poverty line, they're going to be punished if you
do that. They're not going to be able to maintain a quality
of life if you expect more of them. It might not be so bad for
people in upper income groups.
A point I wanted to make about Social Security and Medicare:
When they benefit older people, they also benefit middle-aged
and younger people. Middle income people need Social Security
for their parents, need Medicare help for their parents because
if they didn't have it, the burden would fall on them and
it would be even more difficult to meet the needs of their children.
And in general, I worry too about pitting the old versus young.
I think it's a dangerous way to formulate it. I agree with
Bob that perhaps a more helpful way to think about it, this is
what Norm Daniels does, is to think about the distribution of
goods over the life course, in which case you'd spend more
money on education in youth and you spend money on so on and so
forth.
That's basically it.
CHAIRMAN KASS: Ben Carson and then Paul, and
then Bill May.
DR. CARSON: I thank both of you gentlemen
for that enlightening discussion. It was quite interesting.
For Dr. Binstock a question. You rather humorously depicted
the scene where you were with your mother with Alzheimer's
Disease and she would derive great joy every 10 minutes as you
reminded her who you were. If it were someone else and they said
that they were you, would it bring equal delight? In other words,
is there some cognition that allows them to recognize whether
you in fact are telling the truth and does that go hand-in-hand
with memory loss?
And the other issue for both of you, I certainly can resonate
with the question that Janet asked about the use of resources,
recognizing as a physician that somewhere between 40 and 50 percent
of the total lifetime medical dollars are spent during the last
six months of life as an average statistic. Now, that means that
a lot of those resources are used basically to extend or prolong
a life that is pretty terminal at that point. And I wonder if
we need to make a distinction between just using resources on
people who are ill and using resources on people who are terminal?
PROF. BINSTOCK: Well now since you asked the
one about my mother, I would leave that to our neuroscientists
whom you're going to meet with as to what's going on in
terms of the cognition. I doubt if I told some of the other people
in my mother's nursing home who I was that they would get
as excited about it as she did.
On the question of expenditures on people who are in their last
six months of life, there's a little bit of a misleading aspect
of that in this sense: That it implies, and I'm not suggesting
you're implying it, but as it's generally used that these
expenses are high cost, high tech interventions to, as you said,
prolong or extend life. You know, and prolong it beyond what
is a little hard to say, since prognoses of near death except
in cases of cancer is virtually impossible as far as I know from
the literature. You know, where it's been systematically
studied by Joanne Lynn and others. But the misleading implication
of this high tech, high cost intervention lies in the fact that
5,000 older people die everyday in this country, that is people
65 and older. And it's a high volume activity and most of
it takes place at a relatively low cost. So that for example
if you have bad symptoms and an ambulance takes you to the emergency
room and you're pronounced DOA, you're a Medicare expenditure.
If you die in a nursing home, you're at least a Medicaid expenditure
and may very well be at that point a Medicare expenditure, but
not terribly high cost expenditure.
To my knowledge of the literature going back from Anne Scitovsky
of Berkeley and forward, the money you would save if you denied
high cost, high tech intervention to people who are in their last
six months of life, would be relatively negligible. So for example
there was one point, and I haven't done this recently where
I looked into it and I'll wind up here, if physicians know
ahead of time for people 65 and older, not 80 and older, who was
going to die within the next six months and would be costly and
could ethically bring themselves not to treat, you would save
3 percent of Medicare, which is not a great deal for making that
judgment which you can't make anyway, but even assuming you
could that's what you would save.
So that's my response on that, I guess. Tom?
PROF. COLE: Well, the only thing I would add
to that is there's a study came out probably three or four
years ago that showed that people between 65 and 75 are the people
on whom most high tech intervention and surgery and medical costs
is expended. People from 75 on, the cost of their care is lower
and the cost of their dying is lower. So, again, this is complicated
and it's hard to really get a single, I think, picture on
it.
Now, I really couldn't follow your logic when you asked
the question should we distinguish between a person who is terminal
and a person who is ill. I guess because it too hard to know
in advance, I think.
DR. CARSON: I mean there are certain diseases
that we simply do not have success with. We know that they're
going to die, and yet I personally have seen numerous instances
where significant attempts are made at prolongation, and I do
recognize that in many other countries, particularly in Europe,
those situations are handled in a very different way. I'm
not saying that one is right or one is wrong, but saying do we
need to begin a discussion on trying to distinguish this.
PROF. BINSTOCK: Absolutely. What I was trying
to bring back up here unsuccessfully is a slide I have on Medicare
Part A expenditures on coronary artery bypass operations and hip
replacement by older age groups. And what is shows is if you
said no CABG operations for anybody 80 and older, you would save
six-tenths of one percent of Medicare Part A reimbursement. If
you said no hip replacements for anyone 80 and older, you'd
save three-tenths of one percent.
And so you'd have to go through an awful lot of things to
gather up much money.
CHAIRMAN KASS: We are almost at the end of
what we've budgeted here. I'm going to let the people
who I've got in the queue make some comments. And maybe we'll
take the comments together and then let our guests respond.
Paul, Bill May and Peter briefly, and then we'll have a
final response.
DR. McHUGH: Well I have just the briefest
comments of those two very excellent presentations.
For close to 50 years now I've been watching and practicing
in the realm of geriatric neurology and psychiatry. And I appreciate
always these overviews that we're getting about this domain
of humankind; that's the wholesale and I'm a retailer
delivering to individual patients at individual times and making
individual decisions. The only thing that I want to be sure that
we mention in our wholesale concepts are that sometimes we give
meaning when we are not, meaning that fundamentally is negative
in situations where we're both either not sure that should
be or that we don't explain that this a phase towards to success.
Two points about that, two specifics about that.
I remember when in the mid-'60s there was a big theme within
the care of elderly psychiatric patients to have us be deeper
in our understanding of their depressions. The depressions were
to be meaningfully understood, after all age is a time of loss,
a time of giving up, a time of deprivation. And a few of us seeing
these patients and in the process of hearing these things would
say— but most of the old folk we know are happy. Why is
Mr. X depressed? And they would say, well, he has lost things.
And we gradually realized that a very large number of them had
major depression that had come on them as an illness and that
our attempts to give meaning to what was fundamentally a biological
process afflicting elderly, and which were immediately amenable
to various forms of physical treatment, transformed the experience
of the elderly and of course transformed the care of the elderly.
Prior to that we were so wise and helpless, and after all we got
more superficial and helpful.
Similarly, with this issue of Alzheimer's Disease. Again,
I was around when, although Alzheimer had described his stuff,
nobody was recognizing Alzheimer's Disease. They were calling
it senility or hardening of the arteries. And that wasn't
bad. I mean, because old gramps got hardening of the arteries
and we could understand him. But once old gramp got Alzheimer's
Disease, then it was a curse, a curse that people began to wonder
whether he deserved stuff, whether he should be given stuff, whether
his life was a burden to him and to the rest of us, instead of
saying well, you know, he's just as he was with hardening
of the arteries — still able to enjoy the Red Sox whenever
you can. And never did anyone say that the labeling of a category
like this is a phase in the development of the science of medicine
of neurobiology, and that we have to go through this phase where
we have a category that we identify and are defined ways to treat
it, and ultimately to prevent these things. And we're not
telling our people that, yes, it's tough. We have to use
a variety of treatments to help you now, but meanwhile in my opinion
in a decade or so we're going to be able to postpone the onset
of Alzheimer's Disease in those individuals who are identified
with it by 20 or 30 years, so that you don't get it until
you're 110.
And I think that the geriontological world has an important
role to play in giving optimism to science and both our wholesale
and our retail delivery of that. And I'd just like to ask
you two gentlemen who have spoken so wisely about these matters,
whether those thoughts cross your minds as well.
CHAIRMAN KASS: Would you be willing to hold
and let the other comment be made? Bill May, please.
DR. MAY: Tom Cole, when you very gently took
to task the President's Council for its equation of aging
with senescence, really a reduction of aging to senescence seemed
to be what you were worried about. Because it generates a cultural
response of either resistance or denial which science and technology
serve, conveniently serve. You need science and technology to
resist this process of senescence or you rely on it to help you
avoid having to face it yourself, because you can punt them to
the hospital and hope something good will happen out of it.
Now, you're not a Luddite and so you don't want to dismantle
science and technology, and the question is how do you tame it
so it doesn't become the sole source of meaning. Because
reportedly aging should provoke in us more than this sense of
our story.
Now, in passing you talked about the importance of storytelling
of the elderly. But to what degree does that whole device of
storytelling do much more than simply encourage the individualism
that you already are somewhat worried about? Sharing your story
is different from having a shared story. And the problem with
a society like ours is the breakup of overarching narratives so
that it's very hard to see one's own story in the setting
of an overarching narrative and you get simply that New Yorker
cartoon, a rise in the staircase and, whoomf, down to the bottom
and there's a palm tree for a few years before nullity. And
absent shared stories, the problem of a pluralist culture like
ours, absent a shared story of so often the storytelling that
you get from the elderly either is patiently and politely listened
to while one takes a side long glance at one's watch ready
to leave after they've appropriately told their story, or
when the elderly get together an awfully lot of the stories end
up merely an organ recital. So that our shared story tends to
be the shared story of senescence and what might or might happen
through the resources of science and technology, and that tends
to become the shared story in our time.
CHAIRMAN KASS: Would you each kindly take
whatever time you'd like to respond to these comments and
take a last word as you would like?
PROF. COLE: I appreciate Dr. McHugh's
retail point of view. My wife is a psychoanalyst and is quite
free with her use of psychopharmacology, which brings people to
the level where they can deal with what existential issues are
in front of them. And certainly concern for existential meaning
doesn't really dictate anything in terms of clinical guidelines.
It's something always to be aware of and present for in the
cases where it's an issue.
Optimism and hope. I guess optimism and hope for me are different
things. We need to encourage hope as a virtue. Hope is a commitment
to a future in spite of the fact that things might not work out
for the best. This is a distinction Reinhold Niebuhr made. So
we need not to give false optimism, but we need to give hope.
And we need to hold out the prospects of what may very well be
around the corner, but we need to give people hope in a clinical
sense in terms of making sense of their condition at the time.
If I may just respond briefly to Bill May. The question about
whether storytelling encourages individualism or not I think is
an important one. I don't think that's always case, and
I'll tell you why for a couple of reasons.
I've involved in actually teaching lifestory writing groups
for seniors in a variety of settings, assisted care settings,
nursing homes, community centers around the country. And one
of the things I find is that actually those groups build a certain
kind of community and that the stories, they're not about
the individual themselves. The stories are always about the others
in one's life and that the opportunity for what Barbara Myeroff
calls re-membering- she puts a dash between "re" and
"membering." The opportunity for that gives people
the chance to move around the different members, the people, the
characters, the families in their lives so that when they create
a whole, it's not just an individual whole. It is individual,
but it's socially constructed and reaches out beyond itself.
And it does enable them to see themselves within a cycle of generations.
And, of course, when people belong to a faith tradition, then
it's much easier for them to see themselves in a larger narrative.
But that's not often the case or always the case.
CHAIRMAN KASS: Professor Binstock—
PROF. BINSTOCK: Thank you.
First of all, Dr. McHugh, I lived through some of that myself,
and I think your comments are very well taken. And in the 1960s
in particular as I remember a so-called disengagement theory was
in fashion, right? So that it was normal to disengage and withdraw,
etcetera, which has since been very much challenged. But absolutely,
I remember that well.
And then the transformation of senility into Alzheimer's
Disease, which I think you aptly described as a phase along the
way to getting more support for dealing with things or a phase
of politicization.
There's a very interesting article the Council might be
interested in, written by Patrick Fox, which is on the whole story
of how the Alzheimer's movement as a political movement got
going. And it's a good article to give you a sense of that
perhaps.
And take heart on the Red Sox, although they lost last night.
As for Dr. May's comments, I thought they were extraordinarily
insightful. All I can say in closing, I had to do my personal
narrative. Somebody asked me for a journal to write what I had
contributed as a political scientist in gerontology in my career,
and I resisted it very much because first of all there was the
implication, oh, my career is over. They want a has been to say
what it was like. But then I tried to bring in some aging aspect
to it. And when I settled on this title, I just wrote away, which
is "Broken Down by Age and Sex: A Political Scientist In
Gerontology.
It's been a pleasure chatting with you and being here with
you.
CHAIRMAN KASS: Thank you both very much.
To Council members who are generally hard to regather once we
let out for a few minutes, we have two more guests. We're
running about 12, 13 minutes behind. Let's reconvene at five
of the hour. We'll start a few minutes late.
Thank you very much.
(Whereupon, a recess at 10:43 until 11:02
a.m.)